Days with Dylan

Cassidy

2011-11-08T19:57:00.002-05:00

Outside of Cassidy's daycare room there is a bulletin board. It used to have apples on it and now there is a picture of a turkey asking the question, "What are you thankful for?" Each child in the class answered the question which was then written on a leaf by the teacher. After I left the classroom (and my children) this morning, I stopped to read this bulletin board. Some of the children's responses were, "candy", "my cat", "stuffed animals", and "leaves". I searched for Cassidy's response, so curious to see what she had said.

I thought it may have been, "my dolls" or "books".

Or maybe, "my new bike". Possibly, "my favorite pink skirt" or "markers".

No. It was not any of those things.

Cassidy's response to the question, "What are you thankful for?"

One word:

Dylan.

Hope for Tristan

2011-11-04T18:07:00.000-04:00

This year, through Reece's Rainbow, I am advocating for Sweet Tristan. Tristan is a two year old boy who lives in Eastern Europe. He is an orphan who also has Down syndrome and because of this, will most likely be transferred to an adult mental institution by the time he turns four years old.

For the past couple of years, I advocated for Sergey, who now has a family who is working hard to have him home by Christmas.

All children deserve this! Tristan deserves this!

Let's give this little boy some hope...

Here is his profile from Reece's Rainbow:

Birth Date: May 2009

Gender: Male
Eyes: Blue
Hair: brown

Diagnosis: Down Syndrome, cerebral ischemia (insufficient bloodflow to the brain); Sweet Tristan also had prenatal HIV contact.

Can you help him? Will you help him?

You may help by advocating, donating, and praying.

If you donate $35 or more, you will receive an ornament from Reece's Rainbow with Tristan's picture on it. There is a donation box on the right side of my blog. All of the money raised will go directly to Reece's Rainbow towards the cost of Tristan's hopeful adoption. All donations are tax deductible.

Let's help give Tristan a chance at life...

Tonight

2011-10-24T19:39:00.002-04:00

I remember when Dylan was two or three days old. We were in the NICU with him and got called into an office to meet with the genetic counselors at the hospital that Dylan had been transferred to. The results from Dylan's FISH test had come back and they wanted to discuss them with us.

Dylan was born with Down syndrome and as we found out in this meeting, meant that he would be doing just about everything later than everyone else. She said, "You know how other kids walk at about one year?" Yes, I nodded. "Well. He probably won't walk until about two...maybe three."

That. That statement right there burdened me for a long time. I could not, for the life of me, comprehend it. Cassidy walked when she was 10 months old... How could this be? How? What would we do? What...?

Well, it was to be. Dylan turned two years old, then three. Was he walking? No. Was it the devastation that I once believed it would be? No.

You see...after the initial bombardment of what he may or may not do, you discover that life happens. Your eyes open to the bigger picture of what truly matters. Walking, talking...that will come.

Yes, in time that stuff comes. And you smile and celebrate and marvel at the work that went into this very moment.

And then.

Just like that...life continues on.

Birthdays, Bikes, Buddy Walks, and Bridges

2011-10-11T20:06:00.000-04:00

Life for us is different now. With my new employment and the kids' daycare and preschool schedules, our time together is less than it used to be. No, it is not like it was before, but it's good. We are all where we are meant to be and it's very, very good.

Cassidy celebrated her fifth birthday recently, which, if I think about deeply enough, fills me with a whole slew of emotions...

She got a big girl bike and has quickly gotten the hang of it. Now when we go outside and she rides it, she tells me straight away that she "does not want any help at all."

****

This October was our third year attending the Buddy Walk for Down syndrome. We couldn't have asked for a better day.

As we walked around, I couldn't help but think about how strange it is that I am the same person that I was three years ago. It upsets and disappoints me to think that there was once a time in my life that Down syndrome felt like a pit in my stomach... And now? I can honestly say that I am at absolute peace with it. Hm. No...that's not right. Ah, it is deep and probably a post for another night, but suffice it to say, I will be forever grateful for whoever it was out there who thought that I deserved a child like this...

Forever grateful.

****

Sometimes in the morning, in our rush to get out of the front door by 6:20, I forget... I forget to count my blessings. I forget to remember that I am lucky and blessed beyond belief. I forget until we begin to approach what Cassidy has named, "The Sun Bridge". Every morning as our car nears it, Cassidy asks if we are close. "Are we at The Sun Bridge yet?" and Dylan will yell, "Sun! Sun!" I tell them we are almost there and that is when I remember all that is important. I look in the rear view mirror and smile. We cross the bridge and look to our left as we see a perfect view of the clouds. We used to see the sunrise, but now it is too dark. Now we see the clouds and it's almost better...

This morning as we piled into the car, backpacks, bags, papers falling, Cassidy asked me if we would see something pretty over The Sun Bridge today. I said, "No, it's too dark." She said, "Yes we will. I know we will.". As we approached The Sun Bridge, we looked over and saw the most beautiful pink and purple sky. Cassidy said, "See! I told you. I was right. I was right, wasn't I?"

And I remember. Enjoy this time. Savor this.

Be grateful...

He can do it.

2011-09-13T16:41:00.004-04:00

For a couple of weeks now, I've heard rumors about the "W" word.
Rumors that he's taken steps. Steps? I've never seen steps. I've never seen A step.

Today when I picked up the kids from daycare the providers told me, too. His note from preschool read that, "Dylan was taking 4-5 steps today!"

FOUR to FIVE?

I asked him about it when we got home. "Um Dylan. You can walk?! Will you show Mama, Dylan? Pleeeease?!!" He said, "No".

Still slightly unconvinced about this whole Dylan walking thing, I went in to the kitchen feeling quite confused. Three seconds later I heard him and Cassidy talking. She was asking him to walk. "C'mon Dyl. You know you can do it!".

I grabbed my camera and filmed undercover.

I totally caught him!

His face says it all.

How can I describe what this feels like? What this means? How this all must make Dylan feel? Ahhh...

Saying, "I am proud of you, Dylan" scarcely scratches the surface.

And just like that...

2011-09-02T19:14:00.006-04:00

In the midst of our packing, moving, school and new job preparations,

Dylan

learned

how

STAND

!!!!!!!!!!!!!

I'm feeling it.

2011-08-26T19:50:00.002-04:00

For us, summer is ending and a new chapter is beginning.

Soon our days will look quite different from this.

We have more big changes ahead and I am feeling it. Excitement. Stress. Anticipation.

For the next few days, our lives will be looking more like this:

And this:

And less like this:

He's the pool mayor and the pool life guard.

And takes his responsibilities very seriously.

We are moving next week, I'm starting a new job, and the kids are beginning daycare and preschool.

Are we worried?

Hmm...he may not be, but I'm certainly feeling it...

Because it IS our problem.

2011-08-19T07:57:00.001-04:00

Yesterday I came across this post. Please take a moment to read it, look at the pictures, and think...

This is a child, just like Dylan, with a diagnosis of Down syndrome. And because of her diagnosis, she is thought of as having absolutely no value; no worth.

How can this be?

Advocate. Educate.

Because it IS our problem.

The Dora Big Wheel

2011-08-13T18:09:00.001-04:00

"See Cassidy wayyyy down there?"

"Yeah. I want to do that, too."

"Hmm. Feels like a pretty sweet ride."

"I'm totally doing this!"

"S'cuse me Cass." (He seriously says this ALL of the time! It's so funny...: )

"I guess I'll just see you guys later."

"See...just like Cass."

*Oh - It's a blessing that Cassidy is such a good sharer, because Dylan wants to have and do everything that she does! I believe that she is his very best teacher...

Summ, summ, summah time.

2011-08-10T16:13:00.004-04:00

This summer we had the option of either sending Dylan to a preschool for children with special needs, or opting out of summer school and continuing with his Early Intervention services.

Originally, I had planned on sending him to preschool as I thought it would be an integrated preschool setting, just like the one he will be attending in September. But, apparently the summer program is different. There are different teachers from the ones who will be teaching in the fall, as well as different therapists and children, too. In the summer, only children who currently have an IEP (Individualized Education Plan) attend the school and are typically older than age four.

Once I was told this information at his IEP meeting a couple of months ago (was it really that long ago?!), I decided to opt out of summer school and continue with his Early Intervention services. Dylan has been receiving, and still does receive, Physical Therapy, Speech Therapy, and Educator Services. We have been very fortunate that his EI Team agreed to continue working with him (except for his PT who went to India for the summer- BUT was quickly replaced by a wonderful woman!). Dylan's team will continue working with him for the next few weeks. Then...we are done.

I can not even begin to wrap my head around the fact that in 3 weeks, we will no longer have Early Intervention in our lives. Dylan was a couple of weeks old when EI became a part of our family, and it seems so odd that we will be "on our own" once Dylan begins school. Maybe it sounds strange, but I am actually really going to miss EI...alot.

Anyway...
I feel that the decision to keep Dylan home this summer has been the best choice for him. But really, he hasn't been "home" much at all. The swim club is where we've been! The swim club that we belong to, which is where I coach a swim team, has been a blessing for both Dylan and Cassidy.

No, he still isn't walking or standing (a post on that to come later). I just like to stand him up against walls and/or poles.: )

Cass has made so much progress this summer, both in the water and out!

This is our first summer at this club, and I'm pretty sure that Dylan knows each and every member by name.

And I know they all know his.

I do not think it is a coincidence that Dylan's speech has increased dramatically this summer. I believe that this swim club has been the best inclusive classroom that we could have asked for!

Now if we could just slow this summer wayyy down, that would be awesome.

He surprises me.

2011-08-07T11:27:00.000-04:00

Still after three years, Dylan surprises me.
A few nights ago, we were doing our bedtime ritual of reading books and lounging in Cassidy's bed, when Dylan pointed to Cassidy's toy monkey, turned to me and said, "Monkey. Ooo, ooo.". I said, "Yes!!" and then asked him a few more animal sounds to which he knew. I ran downstairs to grab my video camera and filmed.

Having Dylan now able to better communicate with us verbally has made a wonderful difference in our lives. He expresses his needs using spoken words which is so much fun to see and hear! It truly allows us to see a whole new side to Dylan's personality. Up until a few months ago, Dylan was primarily signing with us (he knows over 100 signs), which I highly recommend and am a huge advocate for! But now that he is incorporating more and more spoken words, he is beginning to drop some signs. He still watches (and is obsessed with) Signing Time, so while his spoken vocabulary increases, his signing vocabulary continues to increase as well. Win, win.

Plus...how cute is he making little animal sounds? Love him!

I'm not ready.

2011-08-03T20:19:00.000-04:00

I have spent some time this past month thinking about my blog. I considered letting it go, wondering if perhaps it's time...

But I'm not convinced. There is still something keeping me here.

I'm not ready.

I started this blog shortly after Dylan came home from the NICU over three years ago. Dylan's diagnosis of Down syndrome was a surprise at birth. As were his heart defects. I started this blog to keep family and friends updated on Dylan's daily life - which is why I named it, "Days with Dylan". I had no idea that it would become something so much bigger...

This blog became my support system from quite early on. I remember years ago, writing posts with tears falling down my face. I was overwhelmed and found that the connection with others who were going through the same things as we were, immensely helpful and comforting. Especially around the time of Dylan's heart surgery, I felt that I was not alone; that there were many people out there thinking of us...people who knew exactly what we were experiencing; what my own heart was feeling as his got repaired.

Now that Dylan is 3 years old, life is different. I am not sad and I am not afraid. I am hopeful, happy, and deeply in love with my son. This past month I wondered if there was any reason for me to continue Days with Dylan. Our life is...much less dramatic now.

But there is a reason to continue. The reason is Dylan. The reason is the importance, the necessity, of advocating for people with disabilities; for people who are thought of as "less than". If there is any chance that someone out there may come across this blog and walk away with the feeling that Down syndrome is nothing to be fearful of, then it is worth it. If someone comes across this blog, spends some time reading about Dylan, and leaves thinking just a little bit differently about the way she treats others or the way she thinks about people with disabilities, it's worth it.

I honestly believe, deep deep down in my bones, that Down syndrome is a blessing.

So, I'm not ready to stop just yet. I want to keep writing and sharing Dylan's story because I feel that it's a story that is very much worth sharing.

*******

Enough with the serious stuff...

Today.

2011-06-28T19:23:00.000-04:00

Happy Birthday, Little One.

You are

without question,

one of my most favorite people.

Thank you, Dylan, for all that you are. Because of you, my life is better in every single possible way.

I hope that you enjoyed your special day today.
I love you so very much.

Three.

2011-06-25T15:51:00.000-04:00

It is very difficult to remember that there was a time in my life

before Dylan.

There is something so special about him, so magical and amazing, that words can not do justice. To meet him...is to understand.

He is about to turn 3 years old.

And I could not be more proud.
Or more in love.

Happy Birthday, Sweet Boy.

Patience

2011-06-09T09:02:00.038-04:00

Very frequently, I find that I have to remind myself about patience.

I used to think that I was a relatively patient person, but now I am not so sure. Maybe it's life circumstances that are shortening my string...maybe it's that I am allowing stuff to get in the way of what is truly most important.

It's just that sometimes I feel like we should have it all together all of the time. That everything should have fallen into place by now. That it should be easier, maybe...

But we don't and honestly, we can't. And it hasn't. And it's not easier.

It is life.

And it's hard sometimes.

When I start to feel badly and the guilt creeps in, I remind myself that in life we must take steps.

I remember that these steps may not always be in a noticeably forward motion. That there may be times when we take backward steps. That there may be times when we take baby steps.

But we're up and we're moving. And that is good.

Things will fall into place. They probably are falling into place as I type this - I just can't quite see it yet. In my heart I believe that. In the meantime, I need to remember to be patient with it. Be patient with the steps; with the process. Be patient with my kids. With myself, too.

Be patient with life.

Because really, it is so, so good!

Rescued!

2011-05-31T19:56:00.000-04:00

Yes!! When I clicked on the "Rescued" page on Reece's Rainbow the other day, words can not describe how thrilled I was to see that sweet Little Sergey has been found! Click here to read all about who his new family will be.

His new mama has a blog called Saving Sergey. Check it out so that you may follow along on her journey as she rescues Sergey M. from an orphanage in Eastern Europe and gives him the family that he so completely deserves.

Now that Sergey has a family, I have decided to become a Reece's Rainbow Warrior for Little Mr. Tristan. Please click here to read all about this amazing boy, waiting for his mama to come for him.

Tristan's adoption fund is currently at $0. Can you help add to his fund? Every little bit helps his chances of finding his mama, too. Click here to donate.

Let's help Tristan. He deserves his chance at a life that is worth living.

Thank you!

Dylan's IEP

2011-05-27T16:25:00.008-04:00

Dylan...

Sweet Boy...

A couple of weeks ago, we had Dylan's very first IEP (Individualized Education Plan) meeting. Being a teacher, I have attended these meetings before, but this one was very different. This time I was on the other side. I was the mama.

Prior to the meeting, I had received Dylan's evaluations and had time to review them. There was an eval for Physical Therapy, one for Speech Therapy and one for Occupational Therapy. I was not actually present for these assessments, as they were completed while Dylan was at daycare but reading through them I felt they were fair.

I was not surprised to read that his biggest challenges fell under Physical Therapy. This has been the case ever since he was an itty bitty floppy little one. It is no secret that he has low tone and has to work extra hard for things that may come more easily to others. The key is getting him to want to work harder; getting him to want to walk. We'll get there... We're looking into possibly getting him a walker so that while at school, he can be upright with his friends. (Does anyone have any thoughts/ideas on walkers?)

His greatest strengths are definitely speech related. Lately he has been blowing me away with his speech! At this point, I would guess that he has at least 50 words and over 100 signs. He is at the stage now where he can (and will!) repeat every single thing that is said. It's the best! And signing? Forget it. He has surpassed me at this point.

Dylan will begin Integrated Preschool in the fall. His teacher will be Cassidy's current teacher who is absolutely wonderful. She, along with her team, actually requested that Dylan be in their class, so I have all of the confidence in the world that he will be well taken care of. Dylan will receive some pull out services, however will remain largely integrated in the classroom for the majority of the school day (2 1/2 hours).   He will also receive services within the classroom setting as well.

It's funny. I thought that I would be nervous about beginning this process, but found the opposite to be true.  Prior to the meeting I had a totally calm and peaceful feeling. It continued throughout the meeting as well.  I fully believed that everyone was there (12 people total) with Dylan's best interests at heart. I believe that we are in an excellent school system that has a great special education program and am honestly thrilled to see how wonderful Dylan does in the fall.

This entire IEP process has been especially interesting for me. Not only because I am going through it with my son, but also because I have recently committed to obtaining my Master's Degree in Special Education. I am currently taking my second grad course and to say that I am finding it interesting would be a major understatement.  I feel that this is what I am meant to be doing. And how amazing to be able to arm myself with such valuable knowledge in order to best advocate for my son?

I am blessed. We are blessed...

Why?

2011-05-19T20:36:00.005-04:00

Sometimes, when difficult things are happening, I do not know what the reasoning behind it is. I do not know why it is happening but yet I do believe that there is a reason.

I remember seven months ago when I was looking for a place to live, I had found a house that I absolutely loved. Turned out that I could not qualify to buy a place at that time and so I had to rent instead. My sister was driving around condo searching with me and I asked her if she believed that things happened for a reason. She said that she did and I said I thought I did too, but that if this is the case, why couldn't I buy this amazingly perfect and adorable house? Why? What could possibly be the reason?

Turns out that there was a reason. That was not our house. This condo is our house and I now believe that it all worked out the way it was meant to.

Things are happening right now that are out of my control. I do not know why they are happening and it's been difficult, tiring and frustrating. Ever since I accepted the permanent substitute teaching job, things have not panned out the way that I had envisioned them. It's not the job - the job is wonderful and has even reignited that spark that I once had for teaching. I want to be back in the classroom. I want that! It's a part of me, I feel it, and prior to this job I was fearful that I had lost that desire.

The problem is...at this point, I have missed more days than I have been there. I accepted this job trying to help and actually have caused more trouble. Part of my hope, too, was to accept this job as a starting point. As a way to get my foot back in the door and perhaps a full time teaching job opportunity may arise for next year. Perhaps they would think of me for that job.

I do not see how this can be so now. How could it be?

Since I have started working, in one month Cassidy and Dylan have had the stomach flu, conjunctivitis, double ear infections, colds, strep throat, fevers, rashes, roseola...I know there is more but I can't even remember it all anymore.

Each time one of my children is not feeling well while at school, the nurse calls me and I have to leave to pick them up at school. Each time a child is not feeling well in the morning, I have to call for a sub (even though I am the sub!). Each time a child gets a fever, they need to be fever-free for 24 hours before returning to school. Same goes for conjunctivitis. And strep. And roseola.

Why is this happening? I mean besides the fact that this is what happens at daycare. I get that. I mean what is the big reason? Is there a big reason? I have to believe that there is because otherwise it's too hard. I have to think that there is a reason why this has not worked out the way that I had wished...that perhaps I will look back on this time and understand that there was a plan after all.

~~~~~~~~~~~~~

We had Dylan's very first IEP meeting this week. I will share all of the details of that once I am able to think more clearly....: )

Live in your strength.

2011-05-02T14:29:00.003-04:00

At this very moment, while I should be substitute teaching in a seventh grade language arts classroom, I am sitting here on my couch drinking green tea. The message on the other end of my tea bag tells me, "Live in your strength." and I'm trying to. I'm trying.
After a week of sickness and a week of vacation, last week we made it through. Success. A full week of work and daycare was under our belts. We did it.

This morning began another new week. Health, happiness, teaching, daycare. And tonight is my last graduate class, one in which I am scheduled to present my final research paper.

So, wouldn't you know that half-way through the day today I got another phone call from the daycare nurse? Cassidy is sick with a fever of 103. "Can you please come and get her now?".

Live in your strengh, I know. But sometimes when you can not find your strength, even though you know you have it in there somewhere, it is very hard.

I knew that this was not going to be easy, but I guess I was thinking more of the obvious reasons like starting out in a new classroom, learning the kids, the curriculum, grading papers, getting my own kids to daycare on time, picking them up, packing all of their belongings and keeping them organized. Juggling my grad class reading and writing assignments. What I didn't think about was all of the other stuff that comes up. The life stuff that gets in the way. Sickness. Orthotic appointments. Mandatory attendence at evaluations. Ear tube appointments. Tough adjustments. Tired little ones. Trying to make dinner and pack school lunches with the tired little ones under my feet.

But.

This too shall pass. And in the meantime, I am going to find my strength again so that I can indeed live in it.

I want ball.

2011-04-21T20:08:00.000-04:00

Tonight at dinner, I very unexpectedly found myself sobbing into my tofu scramble.

You see, in the past 5 months since we have been working with our new team of Early Intervention Developmental Specialists, they have been using picture cues with Dylan. He hadn't been introduced to these in the past. But now, both his Speech Therapist as well as his Educator bring with them a set of many different pictures which they use to help Dylan make choices. During the visit, they will pick out 3 cards with pictures of different toys on them. They will then set up the first Velcro card that reads, "I" and then the second one that reads, "want". They will say and sign "I want". Dylan will then choose a picture card of the toy that he would like to play with and will place the Velcro card after the word, "want". Together they will say and sign, "I want (whichever card Dylan chose, for example "books").   "I want books."

Once Dylan is done playing with that particular toy (books), he will take the Velcro card (a picture of books) and will place it at the end of the sentence that reads, "All done". They will then say and sign, "All done books.".

This is repeated for every choice and is done each and every time his specialists are here.  Recently it has appeared as though Dylan is definitely grasping the concept and yesterday was even beginning to initiate the process a bit.

Over the past couple of days, I have noticed a drastic improvement in his motivation to imitate all words. His ST noticed as well and as I read her notes from yesterday, I see that this is so. She wrote, "He showed some great strides in his communication. He was trying to imitate almost every word and was really looking at my mouth and touch cues for clarity....".

So anyway, dinner...

Tonight Dylan and I sat together eating our dinner while Cassidy played with her toys.  Apparently the meal that I had made for Cassidy, the same one that has been enjoyed many, many times by her before, was yucky tonight and was not worth eating. So I sat sulking, frustrated, thinking about orthotics and why it is that getting a prescription for a larger pair of them for Dylan had to be as difficult as it was proving to be, when, out of nowhere Dylan said, very clearly, "I". I looked up at him as he clearly signed while attempting to say, "want". I couldn't believe it. I put my fork down, covered my mouth with my hands and waited. "Ball". He said a sentence. He said a sentence! He communicated what he wanted with no prompting whatsoever. He wanted a ball and he told me so in just those words. "I want ball".

I couldn't believe it! "Oh my gosh, oh my gosh", I just kept saying over and over.

I was so surprised!!

I sobbed into my tofu scramble and it is hard now to explain exactly why. But I know that in the moment it just felt so huge.  Huge.

Once we regained out composure, I tried to get him to say it all over again. It's certainly not exactly what it was the first time, but still...

Huge.

Could it be?

2011-04-16T19:50:00.000-04:00

So much for my, "There's always Friday" idea. Um, no.

The rest of the week looked pretty much like this:

And this:

This:

Aaaaand this:

Just as we were feeling like all hope was lost and that we'd be stuck in our pajamas with the stomach flu forever, tonight Dylan sat at the kitchen table with a regular shirt on, and ate half of a cereal bar and a piece of banana.

He also gave me one of these:

Oh, how I missed that smile!

Cass isn't there quite yet, but Dylan's got a few days on her. Hey, at least tonight she was upright for a little while...

We may just make it through this thing after all...

First Three Days

2011-04-13T20:13:00.002-04:00

This week was my very first week of going back to work. Well, it was suppose to be, anyway...

Unfortunately, it was also the week for both of my kids to get really sick.

Day 1:

Dylan lying on the floor.

Day 2:

Dylan lying on the floor. Again.

Day 3:

Cass lying on the couch.

And we are not out of the woods yet. In fact, I have already called for a substitute for tomorrow, too.

Well...there's always Friday.

Thank you all for your comments and best wishes on my last post! I really appreciate it!

Going for it.

2011-04-10T10:07:00.005-04:00

Days like these, walks in the park, will now be treasured even more on the weekends.

Dylan remembering what sand feels like in his hands.

Cass chillin' with a duck.

Mama's going back to work. It is time. It may not be absolutely ideal, but nothing is, really. This is awfully close. It all happened very quickly as I was interviewed and then hired on Friday, and I start on Monday. It's an opportunity that I believe I must take. My foot is officially in the door.

There are many "best parts" about this situation, but I have to say that the very best part is the daycare that the kids will be attending. They. Are. Wonderful. They are over the moon excited about having both Cassidy and Dylan. They have accepted Dylan with open arms and have embraced him just as he is.

As it should be, however as I now know this isn't always the way.

But it is the way at this daycare.

I am thrilled to be taking this next step. I am also...
stressed.
anxious.
excited.
terrified.
overwhelmed.
happy.
at peace.
joyful.

We're going for it!

I am grateful as I remember to take it all one day at a time. Is it going to be easy? No. Being a single mom with 2 young kids, taking a grad class and now working full time...it's not going to be a walk in the park, no, but I know that life isn't always meant to be that way.

We're jumping in. We're going for it.

Syndicated!

2011-04-05T19:37:00.011-04:00

I received an email from BlogHer recently asking me if they could syndicate a specific post that I had written on Days with Dylan. I excitedly agreed - especially because of the particular post that they had chosen.

It was published today! Click here to check it out.

Go Dylan, go!!

A big day

2011-04-01T20:02:00.015-04:00

for the Big Guy.

**I wrote this post last night, but couldn't get it to publish for some reason...

Today was Dylan's first day attending a child-only (aka: no mama) playgroup at his Early Intervention Center. A couple of months ago, his educator encouraged me to sign him up for a group with the hope of preparing him for preschool this summer. I dragged my feet for a few weeks and then finally signed him up and received a call that he would be starting on the 31st.

His class meets one morning a week for 2 1/5 hours. It is an integrated class - some kids are from the EI Program, some are not, and they are all around age two.

We got ready this morning - backpack and all.

When I dropped Dylan off in his classroom and began to say goodbye, I lingered probably longer than I needed to. I crouched down and said, "Bye Dyl". I think he thought that he and I were both leaving together because he looked up at his teacher and said, "Bye!".

When I first brought him into the room, his teacher mentioned to me that she is currently in graduate school studying American Sign Language, so she is very familiar with sign. It really helped knowing that because even though Dylan has about 20 words now, he does still communicate primarily through sign.

So, after I closed the door to his classroom behind me, couldn't help but peek through the window, just for a second. Dylan was fine. I took a deep breath and left.

When Cassidy and I went to pick him up, the kids were out on the playground. Dylan did not see us and we watched the class for a little while. I was so happy to see that he was happy! He was in school, all by himself, and he was doing well! My Little One, not so little anymore.

I felt rediculously proud.

But yet, in the very next moment I also felt a quick, unexpected pang of hurt as I watched all of his classmates running around the playground and climbing on small structures. All while Dylan sat. Wanting. Watching. Occasionally he would scoot to catch up, but...

My heart ached a little bit.

It ached not for me but for him. I want everything for him. Everything. Including feeling like a part of his class, like his peers. That includes walking.

I don't want his heart to hurt. And as I watched him, I wondered how he felt as he watched the other kids.

.......

As we headed to the car, I overheard the receptionist ask a man to please move his car as he had parked it in the fire lane. He was obviously not happy about it as he walked outside and, as his young son grasped his daddy's hand, yelled to the person inside the car, "Hey! You need to move our car! These f#!^ing re*@%ds have no parking spaces here!".

......

We went home and later sat on the couch together awaiting a snow storm. With Dylan and Cassidy on each side of me, we snuggled under our fuzzy blanket and read books together.

My conflicted emotions from the morning began to melt into just one, and life began to feel right again.

I am learning. The bumps along the way are just that - bumps. They are fleeting. At the time they hurt like heck, but you do the best that you can at the time and realize that they do pass.

This road, while it is filled with twists and turns and even the occasional bump, it's life.

It's our journey and I go to bed every night thanking my lucky stars that I am on it...

Remember the Whales

2011-03-26T10:41:00.009-04:00

So, what's a mama to do when they leave?

I mean besides walk around the house sighing every two seconds?

This mama can complete most of her graduate school homework in one day, that's what.

This morning I read my assigned chapter in The Book of Nurturing and wrote a one page summary in which I will have to present orally (gulp!) in class next week.

My assigned chapter was, "The Nature of Communication" and discussed "The Law of the Whales". Now, if that chapter doesn't make you cry, well, I don't know what will. Sheesh! It discusses how whales live within pods and use these beautiful songs filled with honesty and earnestness and power in order to communicate with one another. How they do not ever interrupt one another but rather listen and respond only when the first whale is finished. If one whale does sing at the same time, it seems to take the form of harmony and of agreement and encouragement.

And this: It discusses how mother whales sing the gentlest, most tender, and touching humpback song to help guide and encourage their baby calves as they nudge and lift them to the surface where it can draw it's first breath. It is a song described as being one filled with love and pride and confidence.

See what I mean? Tears!

So after I read that and gathered my composure, I contemplated what I was going to do for the next part of my project which was to create an artifact to accompany this law using any medium of choice. Now, I am a former elementary school teacher and am now studying Early Childhood Special Education so of course my artistic skills include using crayons and glue.

Well, I bought a pencil, eraser and some paper and tried my best. I came up with this: I drew a picture of a mama whale helping guide her baby up to the surface for it's first breath using her gentle and encouraging song.

And, well. That just made me all teary-eyed all over again because I felt like it was such a good reminder for me. That communication should be not a lecture but a song - a song of mutual respect, encouragement and trust.

Kinda cool.

When They Leave

2011-03-25T16:29:00.014-04:00

On those Fridays when they leave, I do not do well.

During the week there are times when I wish for quietness, for a clean crumb-free floor, for the chance to sit on the couch and watch my shows on t.v. I do not wish for these things often, but yet, when times get tough, I do. Briefly.

But I know that the Friday will come soon and when it does I will beg for the chaos, for the crumbs, for the Max and Ruby show that I've seen a million times before. Because even though I think I want the quiet peaceful home, I really don't. I don't want it at all. I want my kids. I want them here with me.

It is hard. Yes, I know that this is happening because of life choices that I made, but still. It is so very hard that at times I do not know how to make it all o.k. I don't know how to and I will never know how to because it's not o.k. My kids are not with me and I do not know what they are doing.

I miss them and it hurts very badly.

But I am trying.

In many ways, I am trying.

I am trying to forgive.

I am trying to juggle being a good single mama and being a productive working woman. I am trying to provide a good life for them; the best life for them because they deserve nothing less. But I am nowhere near perfect and sometimes, probably a lot of the time, I mess up. I say the wrong things. I make bad decisions. I make mistakes.

What can I do?

What I can do is just exactly what I tell my kids - "Always try your best because really, that's all you can do. Can't do better than your best...".

Aaaaand when my best stinks, I try harder the next day.

But, oh...oh how I can not get used to these Fridays when they leave...

Hurry up Sunday.

Caught Off-Guard

2011-03-11T16:43:00.011-05:00

That is just exactly how I felt this afternoon - completely and utterly caught off- guard.

I called a Daycare Center just a bit ago to see if I may be able to find out some more information on their facility, as I will be going back to work (hopefully!) soon. I was primarily interested in seeing if they had spots available for the summer months for Cassidy and Dylan. The Director of the center called me back and we began chatting for a little while. The Center sounded great and the woman was quite friendly and enthusiastic.

I mentioned that my son happened to have Down syndrome.

I just threw it out there, truly not thinking that it would make one bit of difference. Naive? Yes, I now see that as so.

But. I do not see Dylan in that way; in the way that she must see him upon hearing his label, for after I told her that he has Down syndrome, there was silence.

I asked if there was a problem and she then said that she didn't think that "it would be a good fit for him".

I was... What was I?
Shocked.
Confused.
Hurt.
Angry.
Embarrassed.
Ashamed to be so naive. So naive to think that my kid may not be able to attend a regular ol' Daycare Center just like any other kid.

Not a good fit? Why? Because he is different? And he's not even really different, that's the thing!

"Why isn't he a good fit?", I asked.

She asked me if he is potty trained. "No, not yet", I said. Are all of the other 2.5 year olds, though, I wondered?

She asked me if he is walking. Oh. Walking. Walking. She hit a pretty vulnerable spot with that one, I will say that. I replied quietly, "No.".

"But", I said. "You never know...". And continued on a little too excitedly, grasping. "See. He wouldn't be starting this daycare until the summer, actually, so he just may be!! He just may be!!!".

More silence.

~~~~~~~~~~~~

I was, and still am, feeling caught off-guard. Reeling. I am trying to understand how this could be. How, in this day and age, that my son, simply because he has Down syndrome, can be unwelcome into a Daycare Center. Why? Please help me understand why he is not allowed there. He could teach the other kids SO much! He could teach the teachers and the Director SO much! He could share SO much of what he knows about life and learning and love.

It's a shame.

And unfortunately I am now aware that I will have many more of these situations ahead. But I will learn. I WILL learn how to be a better advocate. Dylan deserves nothing less.

Nothing less.

But guess what? It is their loss because Dylan is a cool kid. He is a smart kid with SO much to offer.

Short and Sweet

2011-03-10T19:16:00.006-05:00

Every night before I go to sleep, I try to remember to write at least one sentence in my journal. I think back on the day and write something that stands out as being especially good. Sometimes it's not really anything especially good, but rather just a nice memory from a piece of another day shared with my kids.

Today I have three especially good things.

1. Seeing Dylan upright. It's a pretty rare sight so when it happens, oh it makes me so very happy...

2. Crispy Peanut Butter Treats with Chocolate Chips. Are you kidding me with these things!? They're from The Kind Diet, though, so are actually somewhat healthy!

3. And this...especially this.

I have said it before and I will say it again, they are so blessed to have one another. Their relationship, while not always perfect, is really something quite amazing.

Almost-Spring

2011-03-06T14:51:00.001-05:00

Shhh...

Can you hear that? It's the dripping of icicles. The melting of snow! Spring is coming, I can feel it!!

And just in time, too. We've been running out of things to play with inside...

This week I have been spending more time in my sweet little kitchen following recipe after recipe. Have I mentioned how much I am enjoying learning how to cook? How I've gone this far in my life without so much a clue as to how to cook some brown rice (or fine, boil water), I do not understand. I feel like I have not been a good example for my kids and I am so thankful that I have decided to make this much needed change.

All of the meals that I have been cooking have come straight from a recipe that I have either found online or have read in one of my two cookbooks. I am nowhere near the "winging it" stage, but...I'm OK with that. Hey, I'm not even ashamed to admit that I just watched an online video all about how to steam vegetables (well, maybe just a little ashamed :)...

Here are a few of the things I have made this week. Remember - these are all healthy, vegan dishes. It IS possible to eat tasty food that is also quite good for you, too!

Quinoa Vegetable Peanut Stir Fry

Quick Vegan Quesadillas

Tomato Basil Pasta (from my new favorite cooking blog: Oh She Glows)

Oh. I've also fallen madly in love this week:

It's a Green Monster and it's amazing!

~

So, my graduate class begins in one week. I have not been in school for, well...(ahem)...quite some time now and I'm nervous. I admit that recently I've spent far too much time trying to figure out whether I am suppose to bring a notebook and pen (and my Trapper Keeper?:) to class or a laptop?

Ahh well.

Happy Almost-Spring!

Personal Growth

2011-03-01T19:30:00.010-05:00

A new month already? How is that even possible? Well...onward we go!

March.

So, this year, I have embarked on my own Happiness Project and as a part of this, will be coming up with a different resolution for each month. Each of these resolutions will consist of a handful of measurable goals that I will strive to achieve every day.

This month I have decided to focus on personal growth. (Typing "personal growth" just totally cracked me up because it reminds me of my very favorite movie, When Harry Met Sally... "Sally. Someone is staring at you in Personal Growth"... ; )

Anyway.

In January my resolution was to focus on "vitality" and in February it was to "enjoy parenthood". Both resolutions were mostly successful and really got me moving in a positive direction. I want to keep going. And so I will..

This month as I focus on growth, I will be improving on the following resolutions:

1. continue learning how to cook healthy, natural meals (cook at least 2 new recipes a week)
2. project: master's degree; take a graduate level class (Early Childhood/General Special Education)
3. play around with my camera more (get those pics in the camera card developed and start again; don't be afraid of it :)
4. incorporate at least 2 new workouts into my weekly routine

I am so excited to begin this new month with these resolutions in the front of my mind!

~

So...here are some of the recipes that I have been experimenting with. Now, keep in mind that I am very new to this whole cooking thing, so for me, this is actually a pretty impressive accomplishment!

I'm honestly thrilled to continue learning how to cook healthy meals! In fact, as a special birthday present to myself, I bought a new cookbook yesterday!

So, let's see...

Barley Casserole (recipe from The Kind Diet)

Kale (recipe from Whole Foods)

Mr. Dyl being cute and practicing standing

Simple smoothie (our blueberries were going bad, so I needed to use them asap!:)

Just a salad

Pinto Bean Stew (recipe from The Kind Diet)

I have been reading a good deal about health and nutrition lately. There is so much information out there that I honestly had no idea about. There are actually ways to reverse cancer through diet?! YES! Oh, I have been so fascinated with it and am personally feeling amazing as I begin following a plant based diet...

As I mentioned in my last post, please go and read, "The China Study". It truly can be life saving if you are open to it.

Well...right now, I am going to go make THIS to see if it really does, in fact, change my life... : )

'Round Here.

2011-02-21T13:45:00.002-05:00

Today we decided to take all of our zillions of germs and head out into the world.

First stop: Supercuts.

Um.

Slightly overdue, I'd say.

~

One buzz and one bob later:

Ahhh. That's better.

~

And me? While my own hair sits on top of my head in a complete and utter disaster (no pictures of that, unfortunately!) I have put that aside for now because I have recently discovered happiness in a very unlikely place:

Yes, my sweet little kitchen. The place where I have been spending quite a bit of time lately. The place where things have begun to come together for me after reading various books and websites and research on health, diet and nutrition. Can I just say, why is it that I am just now reading The China Study?? If you have not read this book yet - please do. Like, now.

And the really strange thing about this cooking thing is that I am truly enjoying it! And even more weird is that the food I am making is actually pretty good! And oh so healthy...

I'm so excited to share what I have been learning recently about food, diet and nutrition and share some of the recipes that I've been experimenting with...

But for now, the littles

and their new haircuts await.

Much love!

snow.

2011-02-02T19:07:00.008-05:00

I don't think I can remember a winter quite like this one.

Oh, I'm sure there have been super snowy winters before, but this?

This is out of control. I emailed my mom this morning to tell her that we literally had snow balls falling out of the sky. The flakes were giant! And they were dropping onto mounds and mounds of snow already there. Never melting.

I brought Dylan to our back door to take a look...

and he was just as impressed as I was.

I have to keep reminding myself that this is only the very beginning of February and that we have a ways to go yet. And if we continue on the path that we've been on this winter, I'm sure that many, many more snow storms await us...

But it's good. It's good because what I do remember, and what I do know for certain, is that these days may be long, but the years are short...

It's a new month...

2011-02-01T13:00:00.006-05:00

which means new resolutions for my happiness project!

Recently, I have been reading The Happiness Project by Gretchin Rubin. After finishing the first sentence in the book, I had decided to create my own happiness project.

In January, I decided to focus on "vitality" and wrote a post about what my resolutions would be for the month.

I had 4 resolutions:

1. working out
2. acting more energetic (act the way you want to feel)
3. tossing out, organizing
4. tackling nagging tasks

I made a resolutions chart and stuck it to my fridge so that each day I could either check off the goal if I accomplished it, or mark it with an "x" if I did not. My strength was definitely "working out" (all check marks but 4 - and my new bffs are, by far, Jillian Michaels and Jackie Warner).

My weakness was "organizing". That's not to say that I was horribly disorganized all month, but I probably could have done better. I think the final tally was about half checks and half x's on that (ok, maybe it was more like 40/60), but I will say that I am more organized now than I ever have been, so it did help to keep me somewhat on track.

This month, along with working on all of my January resolutions, I will be starting a set of new resolutions in "Enjoying Parenthood".

This month, I will be working on the following:

1. Make memories (start traditions, take time for projects).
2. Treasure memories (work on a daily "One Sentence Journal", begin photo books in Shutterfly)
3. Acknowledge the reality of my kids' feelings (read "How To Talk So Kids Will Listen and Listen So Kids Will Talk", by Adele Faber and Elaine Mazlish)
4. Patience, patience, patience (practice 2 minute "meditation")

I'm excited! Today is Day One. Here we go!

If you are interested in starting your own Happiness Project, you can read more about it here: The Happiness Project.

On walking...

2011-01-29T09:00:00.002-05:00

Dylan is now 2 years and 7 months old (seriously, how is that even possible?) and he does not walk.

He does not walk and that is OK.

When we moved into our new place, we had to begin working with a whole new team of Early Intervention specialists. During that transition, I think we had about two months off from all services and while I did experience a bit of guilt about it, I also felt that the break from it all was actually quite nice. I was able to stop thinking in terms of Dylan reaching goals and begin seeing that Dylan is doing exactly what he needs to be doing. No pressure, just livin' life.

We started Early Intervention here and as I mentioned in a previous post, one of the very first questions his new PT asked me is, "Why isn't Dylan walking?". It caught me off-guard because I had stopped thinking in terms of what Dylan isn't doing and was in the complete mindset of what Dylan is doing.

She says that he is not walking because he is not confident.

I say that he is not walking because he is not ready. Whether it's physical, mental, emotional, whatever, he is simply not ready. And I am not going to push it, I'm just not. Will I work with him? Yes. Will I encourage him? Yes. Will I cheer him on like a wild woman when he cruises along the furniture? Yes.

Will I stress about it? No.

He is going to get there and he's going to do it when HE is ready. I have learned a long time ago that these things happen not on my timeline. I used to say, "Oh, I wish so badly that he'll learn to walk before he turns 2." or "before he goes to preschool." or "before the summer comes"...

Why? What good does that do?

He's trying.

He's learning.

He's building confidence, albeit slowly.

And it's all OK.

He's a happy kid living his life.

And that means more to me than anything else.

The walking? It will come. It will come exactly when it is suppose to come.

When Dylan is ready.

What I Am

2011-01-22T20:00:00.015-05:00

Last week as I attempted to guide Dylan with self-feeding, I saw it. Frustration. Total frustration. Dylan had the spoon and dunked it into the applesauce. He brought it clumsily up to his face and missed his mouth almost completely. I kept my smile on and said, "Oh! That's OK! That's alright!". Dylan made a sound that I can only describe as total frustration.

I think that was the first time I have seen that from him.

He attempted something that is difficult for him and he knew, he knows, that it's hard. He knows that he is not good at it and he is very frustrated by that.

I was explaining this to one of his new therapists a few days ago and as I was talking to her, I realized that this hurt. Knowing that my son is feeling frustrated by something that he can not do well, and realizing that he now knows it is hard for him...that hurts.

She responded with, "This is why we need to get him walking as soon as possible. He is only getting bigger and smarter and will soon be feeling bad about not being able to walk, too.".

That hurt, too.

~

Last night we went sledding with my sister and her 2 sons. Cassidy was struggling with carrying up her own sled and eventually got frustrated. "I CAN'T DO THIS!", she yelled about half-way up the hill. Becky and I shouted to her, "You CAN! Keep going!". She continued to get increasingly more frustrated by the whole situation until finally (apparently) she threw herself backwards into a snow bank. (I missed that part as I had just prior to that decided that "Dylan" was too cold and therefore I should bring him back into the nice warm house).

But Cass was frustrated. She could not do something that she wanted to do. It was difficult for her and that frustrated her.

That hurt to see.

~

This morning I made the connection between Dylan's frustration and Cassidy's frustration. It IS frustrating when you can not do things that you feel you should be able to do. (Honestly, I feel it most mornings as I reach the "upper abs" section of Jackie Warner's On Demand workout. I should be able to do this. Why can't I breathe, why can't I DO THIS?!!) Life can be frustrating. Life can be challenging. Not only for Dylan, though...not only for kids with special needs, but for everyone. Will it be more so for Dylan? As things become increasingly challenging, will it be more frustrating for him? Will it hurt him knowing that he is not able to do things that his peers can do?

I honestly do not know, but what I DO know is that the whole notion of thinking about and focusing on what we can't do is wrong. Yes it's frustrating when we can't do things, but look at all of what we CAN do!

When Dylan's new Physical Therapist came to our house for the first time two weeks ago, one of the very first questions she asked me is, "Why isn't he walking?". I responded, "I don't know. Perhaps he is not ready.". I wish I had added to that all of the amazing things that he CAN do.

Walking will come. Self feeding will come. Cass being able to carry up her own sled - that will come, too. We need to continue to build on that self-confidence, though, because there will always be frustrations with the things that we can't do.

Oh how I want my kids to see the good in themselves and to have the confidence to know exactly what they are. To keep their heads up high, be strong, and be the best that they can be... I want...when the frustrations come, for them to keep going, to roll with the punches and to remember all that they CAN do.

He's growing up.

2011-01-18T14:24:00.012-05:00

Sweet Sergey M.

Two days ago as I sat looking through the pictures of children with Down syndrome listed in the "Youngest Waiting Children" section of Reece's Rainbow, I noticed that Sergey wasn't where he used to be. I scrolled down and down and even further down. Maybe he got moved to a different spot on this page?

No. He wasn't there.

My heart jumped. Could it be?! Maybe...did he...could he...has he been found?! Finally?! I looked at the "My Family Found Me" page.

No.

He is not there.

No, his family has not found him yet.

I remembered his birthday, then, and I found him. Immediate tears. Sergey is about to turn 3 and is now listed in the "Most At Risk" section of Reece's Rainbow. As a 3 year old, he is now getting closer to the day when, if not adopted soon, he will be transferred to a mental institution.

A THREE YEAR OLD. IN A MENTAL INSTITUTION. BECAUSE HE HAS DOWN SYNDROME.

I can't even bear it.

Today I looked again. I wanted to see his sweet little face, his big gray eyes, his perfect little mouth and lovely bald head. I wanted to send loving, positive thoughts to little Sergey. I scrolled down and what did I see?

A new picture! Look at him! Look at how much he has grown! Ah, my heart. He is waiting, all. He is waiting for his mama. He needs his mama. Is it YOU?

And if it isn't...if it can not be you, you can still do something to help. Please click here to donate.

Sweet, sweet Sergey.

It begins with...

2011-01-14T18:55:00.026-05:00

awareness.

It Begins With Awareness.

Please.

If you have not seen this yet, do. I ask you to please, please watch. Grab a tissue (or 5) and with your heart open and a willingness to understand and be inspired, watch it.

(And look closely for a surprise appearance from our little friend, Dylan...)

These may be things...

2011-01-09T19:15:00.007-05:00

that appeal only to this mama's heart, but nonetheless...here they are...

A few nights ago as I attempted to cook dinner, I couldn't help but notice that Dylan was not a happy camper. Rather than busying himself with the magnetic letters and "fridge DJ" like he usually does, he sat on the kitchen floor and yelled and fussed.

It continued this way until Cassidy came running into the kitchen holding a piece of paper with a drawing she had just finished. She took the paper, stuck it on the refrigerator and proclaimed, "There. That should help".

I asked her what it was and she said that it was a "picture for Dylan to remind him how to act". The first face is a picture of Dylan with a smiley face and the second is a picture of Dylan with a sad face...and a line through it.

Ah, so hard to believe that this little one can be such a serious fussbudget, isn't it?

Oh but he CAN! And each time he started to fuss, Cassidy would say, "Uh uh uh! Look at the picture, Dylan. Look at the picture...".

~~~

And on another note:

In addition to increasing his signing vocabulary (his very best sign now being "ice cream" which he signs frantically about half-way through dinner), Dylan has also begun speaking (and attempting to speak) more words! This has been really exciting for us! I kept forgetting to get a video and then finally remembered mid-way through his breakfast yesterday, so please pardon the food in his mouth.

Here are a few of his favorite words:

Some other words that he loves to say but that I forgot to ask him about are: papa (cough), up, "Tass" (Cass), sock, mama, dada...

Because we have moved, we have been on an Early Intervention vacation for about 2 months! Yikes! We officially began again last Friday and are looking forward to learning lots in the next 5 months before ol' Dylan heads off to PRESCHOOL!!

As the saying goes, "The days are long but the years are short". Enjoy IT!

No Vague Dream

2011-01-05T19:30:00.008-05:00

I received this quote in my email the other day and felt it so fitting:

"One is happy as a result of one's own efforts - once one knows the necessary ingredients of happiness - simple tastes, a certain degree of courage, self-denial to a point, love of work, and, above all, a clear conscience.

Happiness is no vague dream, of that I now feel certain."

-George Sand

I hope that when my total belief in this Happiness Project begins to waver, because I am quite certain that at some point it will, I can go back and reread this quote and remind myself that yes, it is right. It is true. Keep at it. Maybe it doesn't feel like it right now, but it's working. It is!

And this. This one, too:

"In my view happiness includes chiefly the idea of 'satisfaction after full
honest effort.' Everybody is guilty of mistakes and of serious
mistakes...But it need not be fatal to a general satisfaction...But no one
can possibly be satisfied, and therefore no one can in my sense be happy,
who feels that in some paramount affair he has failed to take up the
challenge of life."

—Arnold Bennett

My January goals are coming along. Working out is wonderful, I am tackling tasks left and right, and I am making a point of trying to act more energetic. Now, "organizing and tossing out"? That is one goal that I am failing miserably at! Ah well. As the woman in my On Demand yoga workout said this morning - "It doesn't have to be perfect. It takes time and it takes practice."...

So, onward we go. One day at a time. Learning, working, practicing, and seeing the good in all things.

The Happiness Project - January

2011-01-01T17:30:00.011-05:00

Since I have begun reading The Happiness Project, I have been a woman on a mission. I've been consumed with feelings of purpose, direction, understanding and connection... finally.

That book was waiting for me that day in the library, I just know it.

This past week, whenever I noticed that my kids were engaged in something other than me, I would grab my little library book, my trusty lined notepad, and a pen. I'd pick up right where I left off.

The author, Gretchen Rubin, began her Happiness Project in January. Perfect - so will I. She began her project launch with a focus on boosting energy. It makes perfect sense to me - boosting energy will make it easier to stick to all of the happiness project resolutions for future months. So, like Gretchen, I have committed to "Vitality" for the month of January.

Vitality for me includes:
1. working out
2. acting more energetic (act the way you want to feel)
3. tossing out, organizing
4. tackling nagging tasks

I have created a "resolutions chart" which I hope will hold me accountable for these four goals for the month of January. It is currently taped on my refrigerator, waiting, eagerly...

Oh...if you know me you know that I have spent the majority of my life "working out". I swam my way through elementary, middle, high school and then college, too. As if that wasn't enough, I continued to swim for a masters team in Colorado after graduation from college. I then added cycling and running to the mix and competed in triathlons as well as a full marathon while living in California.

After I had Cassidy, I stopped exercising. Completely. People said, "Oh, well, you're busy." "You're a mom now.". "You must be too tired.". I'd say, "Well, yes, that's it.". Then I had Dylan and apparently I was even busier and even more tired. Yes I was, but if I really wanted to, I could have found a way to exercise. I could have made it happen, absolutely. The truth of the matter was, I had lost it. I had lost the spark, the desire, the fire that I once had. Every single ounce of my soul had gone into my kids. Exercise no longer mattered to me.

It matters to me now.

Four days ago, I set my watch alarm for 5:30am. I figured my kids would be up shortly after that, but perhaps I could squeeze in a 20 minute Jillian Michael's workout (my sister had just recently showed me how to use "On Demand". How awesome is that?!). At 5:26am Cassidy came shuffling into my room, "Can I lay with you?". "Oh Cass...I'm doing my exercises this morning. Remember?". (I was so excited about my upcoming workout I had told Cass all about it the night before.) She said she'd do it with me. So, we both did Jillian Michael's in our pjs. We used water bottles for weights. We banged on the floor so loudly doing our jumping jacks that we accidentally woke up Dylan. Not ideal, but a start nonetheless.

And there we go. I started. I did it and I'm going to keep doing it.

Oh...

My Happiness Project...I wonder if this all sounds horribly selfish? Yes, one of my goals in doing this is to be happier, but in being happier, I will be able to make others happier as well. I know, without question, that being a happier Laurie will help me to be a better mama, daughter, sister, aunt, friend, advocate, etc etc... If I want to do all that I know I want to do, it has to start like this...with me.

There is so much more to share, but those are posts for another day.

For now: Happy.

The Happiness Project

2010-12-28T19:30:00.020-05:00

We were at the library this morning making our way towards the Children's Room. We had just walked in and Dylan was already flailing about in the stroller. Out of habit I said, "Shhhh... Please.". Cassidy was insistent on taking off her jacket even though I had just asked her to please not do that. I was sweating even though it was 22 degrees outside. I took a deep breath and glanced over at a table nearby. Among this table of neatly stacked books was one that was differently placed. It caught my eye and I picked it up. "The Happiness Project", by Gretchen Rubin...

Lately I have been feeling a deep desire to find...something. An answer. A purpose. A focus. Energy. I'm searching and searching, but really, what exactly is it that I am looking for anyway? Peace? Meaning? Contentment?

Yes, all of those things, and more, too, but deep down, way deep down in my gut I want to be happier. I know that sounds obvious and anticlimactic, but I mean it. I want. to be. HAPPIER! I want to feel true happiness in this one life that I have.

I want to appreciate the things that truly matter.

I want to make things happen, take control, make a difference, be better. I want to dig up what I know is in there somewhere.

Yes. I want to be happier. And that is not to say that I am currently unhappy. Not at all. I am as blessed as can be! It's just that I know there is more...there is definitely more.

See, I wasn't even looking for a book this morning. I am right in the middle of a great book, actually, but this - this book was there for a reason, I just know it. So I picked it up, checked it out and have read 32 pages so far. I'm sold and I'm going for it.

I discovered that there is actually a blog, The Happiness Project. On this blog is a one minute video, The Days are Long but the Years are Short. I clicked on the link and began to watch it. I had no idea what it was going to be about, really. Cassidy sat there next to me eating her fruit cup, spilling juice all over the place. We had just finished painting and I had just finished getting frustrated with her as she had managed to get the red paint all over her hands and in her hair. The video finished and I looked at her. She smiled at me and I cried...

The Happiness Project. I have no idea exactly what I am going to do, but I am going to do something. And what better time to start it than right now.

Our Nonexistent Holiday Card

2010-12-21T19:20:00.005-05:00

If I actually had gotten my act together this year

I would have sent out holiday cards.

And if I actually had sent out these nonexistent holiday cards,

they would have included pictures

like

these.

So, if you can, just imagine how nice it would have looked... : )

Happy Holidays, All. We love you very much.

xo

Life

2010-12-20T19:00:00.004-05:00

I haven't known quite what to say, so I haven't said much of anything.

The truth is, I still don't know what to say, but I want to at least try. The blog is called, "Days with Dylan and Cassidy"...and I can't write much about that without telling how, over the past few months, our lives have changed.

I don't know if we are finishing a chapter here or if we have already begun a new one. I suppose because most of the time, I don't know whether I am coming or going. Our lives have changed, that much is true, and I suppose it doesn't really matter exactly where we are in this book, but more so that we are moving through, page by page, sometimes word by word and even letter by letter, doing the very best that we can.

My marriage has ended.

The kids and I have moved.

We do not live in our home anymore. We moved because I was asked to. We moved because our life, as it was, was not as I believe this one life should be. We tried and we didn't try. We worked but then we didn't. We talked. We cried. We were not happy.

The details. The details of how and why and but - they do not matter in telling because truthfully, I do not expect anyone to fully understand. Sometimes even I don't understand and I lived it. Maybe you feel empathetic, sympathetic. Maybe you feel disappointed. Maybe you are judging me. But you see, I have not ever walked in your shoes. Just as no one has walked in mine. I would not expect to understand your choices, your decisions, your behavior, your life, just as I don't expect anyone to assume they can understand mine.

With these changes come challenges, that's for sure. We are working through some difficulties, that is true. When your life is shaken this way, it takes some time to get straight. Once you feel your world stop spinning, you open your eyes. You realize you're standing on your head and you must adjust and stand up correctly. You dust yourself off and look around. Your kids are there looking at you. Waiting, wondering what has happened, wondering why. They are waiting for you. You need to somehow make it better, make it alright. Make it safe. You pick up your kids, hug them tightly, and tell them that you love them with all of your heart and that you know they are hurting. You tell them that this is hard, that it is hard for you, too, very hard, but that it will get better. It will.
You look around and see that while some things are familiar, the kitchen table, your favorite hooded sweatshirt, most things are very different. But that isn't really the stuff that matters. You know that you are lucky, really, because you are here, you are together, you are healthy, and there is love.

It is not the best ending to a chapter or not the best beginning...but it is part of the story.

As life continues on, in time, I will join along.

I'll continue doing the best that I can, knowing that some days my best may wind up being lousy.

I'll continue loving my kids with everything I can muster.

I'll continue advocating for the least of these.

Trying to make a difference.

Being a good person.

And being true to myself.

All in time...

*

Tonight, after a challenging day, I was pulling Dylan out of the tub when Cassidy said, "I love my baby brother.". I said, "Yes.". I placed Dylan down on his towel, wrapped him up tightly, and Cass leaned in close to his face and smiled. She turned up to me and said, "I'm just so glad I got this one."...

Me too...

Thank you.

2010-12-03T20:05:00.010-05:00

::blows dust off of the ol' blog::

Thank you to those who have donated towards Sergey M's adoption fund! As his Christmas Warrior, I find that he is never far from my thoughts. Please, if you can, consider making a tax-free donation to Sergey M. through either Reece's Rainbow, the Chip-In on my sidebar, or through Peaceful Products. Every little bit will help bring him closer to finding a family of his own.

If you make a donation of $35 or more before December 15th, through Reece's Rainbow you will receive a Christmas ornament with a picture of sweet Sergey.

Please remember to leave your name in the comments so that I can choose a winner to receive a beautiful custom made journal from Peaceful Products.

***

Lots going on in these parts, but that...that is a post for another day.

Peace, love and hope this holiday season...

Christmas...for Sergey.

2010-11-05T21:30:00.008-04:00

"Maybe Christmas", he thought, "doesn't come from a store."
Maybe Christmas...perhaps...means a little bit more!"

~Dr. Seuss

This year, I have signed up to be a Christmas Warrior for Sergey.

He is two and a half years old and has Down syndrome. He was born a bit early, has a heart issue and has the most gorgeous blue eyes.

It sounds as though I am describing Dylan, except for one heartbreaking difference: Sergey is an orphan.

Sergey does not have a family. He does not have a home.

If you are able, won't you consider making a donation to help Sergey? This money will go directly towards the cost of his adoption.

You may make a tax deductible donation directly through the Reece's Rainbow site (click here) or by clicking on the Chip-In button on my side bar. Please specify that you wish your donation to go towards "Sergey M".

If you make a donation of $35 or more, through Reece's Rainbow you will receive a Christmas ornament with Sergey's picture on it.

Let's help Christmas be a little bit more for Sweet Sergey.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please leave me a comment or send me an email to let me know you've made a donation. One random person will be chosen to receive a beautiful custom made journal from Peaceful Products.

Hiiiiiiieeeeeeeee.

2010-10-25T20:30:00.009-04:00

This morning, bright and early, Cassidy and I walked into Dylan's room and were greeted with a smile, a wave, and a never before heard, "Hiiiiieeeee.".

I gasped and Cassidy, eyes wide, excitedly turned to me and said, "He said HI! He said HI!".

During dinner tonight, he started saying it again, so naturally I ran to grab my camera and caught some of it...

Love it. Love him.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Remember to check out Peaceful Products! Beautiful art pieces for wonderful causes.

So.

2010-10-20T12:58:00.005-04:00

Let's begin with this:

Peaceful Products : Special Artists

You will have the opportunity to win a prize.

You will have the opportunity to make a difference.

You will have the opportunity to help save a life.

Will you help?

More details coming...

Lucky

2010-10-13T20:26:00.013-04:00

I sometimes wonder...

who,

of the two, is luckier?

Is it him for having her?

Or rather, is it her

for having

him...

If you appreciate Signing Time...

2010-10-10T19:30:00.007-04:00

I mean reallllly appreciate Signing Time,

then you can understand our excitement about this year's Buddy Walk.

This year, Rachel from Signing Time performed (with Hopkins, naturally) on stage prior to the walk.

Both Dylan and Cassidy have learned the majority of their signs by watching the Signing Time dvds. Seeing it all live...it was awesome, it really was.

Signing. Ah, it has had such an incredible impact on our lives. It is Dylan's primary means of communicating. I am guessing that at two years of age, he now has close to 80 signs. If he hadn't been taught to sign, we would be missing out on what makes Dylan, Dylan. So much of his personality is understood through signing.

Rachel from Signing Time has two children. One child is deaf and one child has both Cerebral Palsy as well as Spina Bifida. She understands. She knows.

And we just love her.

(Despite what it looks like, both kids really were excited, trust me. I think there was some confusion as to why she was there as a real live person. Tonight at dinner Cassidy asked me if Rachel fell out of the TV and if that was why she was at the Buddy Walk...).

Another magical Buddy Walk experienced. So different from last year, and even more from the year before...

Onward we go.

My best girl...

2010-10-05T13:49:00.007-04:00

is FOUR years old today!

Happy Birthday you sweet, spunky, silly, spirited, sensitive Little One.

I love you and am so very proud of YOU!

Today

2010-09-30T20:00:00.010-04:00

Thank you, Little One.

Thank you for being you.

For you have given your ol' mama

something to smile about today.

Thank you for reminding me that in this life, we do have a choice...and I choose to be like you. To believe. To trust. To see the good. To be happy.

To smile.

To smile...to always try and smile.

September

2010-09-23T20:00:00.004-04:00

She peeks her head into the computer screen and tentatively looks around. She swallows. There is a familiar face there, maybe two. They are waiting. She clears her throat, takes a deep breath, and begins to type...

~

September has brought change into our home, into our lives. Into our hearts. When I am able to gather my wits, when I am able to muster the courage that I am currently lacking, when I am feeling braver, I will attempt to explain. But for now...this:

Dylan has grown into a toddler this September, I feel like. I hang out with this little one just about every minute of every single day and yet I see it - change. He is growing, he is learning, he is absolutely thriving.

He had surgery in the beginning of the month for tubes

and has since then been on a mission to excel.

Cassidy has begun preschool this September and while she likes it well enough, I have a pretty strong inkling who was more excited on that very first day...

Dylan has been making progress by leaps and bounds with eating. We are down from 9 jars of baby food a day to ONE (or 2, but still!). He eats real food (albeit gluten free) for most of his snacks and meals which makes this mama's heart very happy. Oh, I can not tell you how satisfied I will feel when I can stride directly past the baby food isle at the grocery store without so much as a second glance. (Although knowing me, I will stop, look longingly at the millions of jars and say, "Awwwww baby food! Remember when...")...

He has started making many more sounds and has even begun trying to imitate spoken words. His signing is crazy - I don't have any idea how many he knows, but I am pretty sure it's more than either Cassidy or I know...

Cassidy has been her usual busy self, fully enjoying the beginning of our New England Fall.

Cassidy understands that there have been changes. It has not always been easy for her and knowing that hurts my heart. But she is smart, she is strong, and she is very much loved. I have much faith in my best girl...

In September, more pieces have come together for Dylan in the mobility department. One day, I looked over at him and just as if he's done it a million times before, he began to crawl across the room. I am talking crawling - real crawling - belly off the floor and everything.

He has been pulling to stand more and has started slowly cruising along various surfaces of our house.

He has perfected "The Funny Face" while standing. Now that is an accomplishment in and of itself if you ask me.

As each day passes, I feel like his personality becomes more and more lovable. I do not know quite how to explain my feelings for this little guy, but I can say that one look into those sweet blue eyes makes my own eyes blurry with tears.

One look makes me thank my lucky stars that he is here with me.

My Little Ones

2010-08-24T18:00:00.004-04:00

"Me and Dylan and the Sunshine"

By Cassidy, age 3

Strollin', strollin',

2010-08-12T12:52:00.006-04:00

strollin' down the carpet...

Today Dylan's Physical Therapist brought over a posterior child walker.

While Dylan has been showing an interest in pulling to stand recently, I am learning that walking is an entirely different and complex skill. One that is going to take some time. Even the concept of putting one foot in front of the other does not quite make sense to Dylan just yet. His strength is building, but his comfort and confidence in the upright position need some boosting.

But just like everything else, he will get it. He will. We've got the time.

And baby steps are certainly fine by me.

Bailey.

2010-08-06T13:30:00.004-04:00

We are going to miss you, girl.

You have stuck with me for 12 years and for that I am grateful. We had a good life, Bai.

I wasn't always the perfect companion, I know that, but you accepted me, protected me, and loved me just the same. At first you were't too sure about me (I don't blame you) but we grew on each other, didn't we? I know that lately I could too often be overheard complaining about dog hair on the carpets and sneaky escapes... for that I apologize. I did love you Bailey.

You always were a Boulder-Dog at heart, I think. Oh, you were the best hiking partner. But then you fully embraced the West Coast and later the East Coast, too. Going to the cape and swimming after tennis balls was your idea of a dream vacation.

Your life changed once Cassidy and Dylan entered the scene, but I know you understood. You were so good to them, Bai.

And you knew me, I know you did. You got me, girl.

On your last night, when you were not well, you were determined to climb all the way up the stairs to sleep in our room. And I am so glad you did.

You were one-of-a-kind, Bailey, that's for sure...

And we are going to miss you very much.

A Beautiful Sight

2010-08-04T13:56:00.006-04:00

It's a beautiful sight:

Watching my son

as he puts the pieces together.

Watching as he begins to understand that he now has the ability to be upright.

Seeing the strength finally begin to grow along with the motivation and desire that has been there, waiting.

A beautiful, beautiful sight,

this boy.

Sometimes I wonder...

2010-07-30T14:20:00.004-04:00

...where Dylan has learned some of his silly behaviors.

And then Cassidy walks by and it all makes perfect sense...

I didn't need to know.

2010-07-28T14:05:00.010-04:00

In answer to my own question,"Do I need to know?", when it came right down to it I decided that no, I don't.

After Dylan's evaluation was completed, his Early Intervention Team tallied up his scores, wrote them all down, and looked up at me. They asked me, "Do you want to know?". I said that no, I didn't. I fumbled and felt like I should somehow defend myself, but what I said and what I truly feel is that quite simply, it does not feel right to me. Whatever the reason(s) may be, it does not feel right. Maybe I am scared to know, maybe I'm in denial or maybe it's just the simple fact that comparing Dylan to children without Down syndrome does not make sense to me. Quite frankly, comparing Dylan to anyone other than Dylan does not make sense to me. So again, I said no thank you.

I was told again that once Dylan enters public school, I will not have a choice. That I will be told the scores and they will not "sugar coat them either". Whether or not that is true I honestly do not know, but whatever the case may be, I will cross that bridge when I come to it.

Since the evaluation, I have met with Dylan's Physical Therapist to come up with new goals for the next 6 months. He had met most of his previous goals, which is really nice to see. We love progress!!

As I've said before, Dylan is happy, healthy, motivated, curious, and observant. He is friendly and outgoing. He is loving. He is smart and he is loved. He is learning.

I don't need scores to know that...

New Skill for The Guy

2010-07-27T13:51:00.010-04:00

Recently, Dylan has learned that he can pull up to stand

using the cushions on top of the couch.

This new skill

gives Mama roughly 50 heart attacks a day.

But seriously?

With a face like this, I have a feeling he'll be getting away with plenty of mischief in his life...

You'd think I'd be used to this by now.

2010-07-19T14:00:00.006-04:00

These evaluations. Assessments.

Dylan's 2 year eval is on Wednesday and I'm anxious. Each time I think of it - butterflies. But why? Because he's 2 years old now? And his delays are becoming more and more apparent? Possibly. But I remember feeling nervous about his 1 year eval. And I'm sure for his 6 month one as well. I want him to do well, but yet I also don't care. Or rather I don't want to care because I know that in the big scheme of things, it does not matter. But yet... They told me that these scores will be sent to his future preschool. That they will be used to share important information with his future teacher.

They want to share his actual scores with me this time and I said I would think about it. I felt like they wanted me to say yes, as if I am in denial or something, but it's not that. They told me that once he's in school, there would not be a choice - whether I want to know or not, they are going to share it with me and in a not so gentle way, either. Oh, I just don't see how that information can in any way be beneficial for Dylan. Or for me. Will he walk sooner? Talk sooner? Place blocks one on top of the other sooner?

So then, what I don't get is - why the nerves? The butterflies? Sometimes I still worry that I am going to hear something that I don't want to hear... Maybe I am scared to hear it. Maybe it's different than what I think it is. Maybe, just maybe, it is a touch of denial, then. My own thoughts and guesses of "where Dylan is functioning at" don't count because they are just that - thoughts and guesses. They are not official, they are mine. I'm his mama and I am biased. Maybe I am too afraid to hear the words coming from someones else's mouth. Afraid to see the words in print. Words and numbers that would then become very real to me. Words that say that my son, this little boy who I love more than anything in this world, the one who in my eyes is amazing and wonderful and sharp as a tack, is, according to an official evaluation, actually functioning as a...what? 9 month old? 8? I don't think I can bear it, I really don't. Even though I know it does not change a darn thing, it may hurt. No, it will hurt. Badly. And I do not want to feel sad about Dylan...

Do I need to know? Do I need to know exactly how much of a delay there is?

Because my hope is that there are more important things in this life for Dylan. He is delayed, yes. But yet, he IS wonderful and amazing and sharp as a tack. He is friendly and silly. Cranky and loving. Happy and feisty. Sensitive and observant. And he is showing me, showing us, every single day a different side to this life. A different look at life. A perspective that reminds me, each and every day, to thank my lucky stars that I was given it...

So I wonder, do I need to know?

I have no idea what I am talking about.

2010-07-14T13:15:00.002-04:00

Over the past couple of days, Dylan has made serious progress with FOOD. Real, real, food! I am still trying to figure out how or why this all just happened, and I am left with the belief that he simply was not ready before - and now apparently he is.

He has been eating (all gluten-free) breakfast bars, carrot muffins, bread with hummus, puffs, Berry Fiddlesticks. I have been adding crumbled up Baby Mum-Mums to all of his baby food as well to add texture. He's totally into it! Jar by jar, we're cutting back on baby food - finally!

This feeding success was accomplished without the help of an OT. Or any Early Intervention specialist. Yes, I used some of the ideas from our Feeding Team, but otherwise it was all Dylan.

So, it leaves me wondering lately about Early Intervention services. Shortly after Dylan was born, I was told time and time again (and agreed) that more is better. "Give him every opportunity you can to help him progress". Now, I just...I don't know. Things are changing and I just don't know if more necessarily is better anymore. I had wanted to cut back a bit this summer because we had been going full swing ever since Dylan came home from the NICU. Then, I wanted them all here and I wanted them here often. I felt like it was my job, as Dylan's mama and his advocate, to get as many services as I could so that he could start early. I didn't think there was a choice, and even if I did, I wouldn't have made a different one because I believed in what we were doing. I thought it was best. I didn't know...I didn't know how to help a little one with Down syndrome.

This morning, after we had taken some time off from EI to vacation at the cape, we had Speech Therapy. Cassidy. was. AWFUL. I mean, wow. And Dylan was tired and in no mood to do what he was suppose to do. I apologized for Cassidy's behavior and inside my stomach was churning. Oh, I did not miss this. His ST kept saying things like, "Don't worry, this is normal." and "Kids who have siblings with Special Needs sometimes have feelings that they can not quite figure out."... And I felt, as I have been lately, thoroughly confused. Confused with it all.

Cassidy has many activities that are special and are just for her - it's not at all like our lives revolve around Dylan because he has Down syndrome. But yet, I can't help but wonder if perhaps at times I am causing more stress, more chaos, more confusion - especially for Cassidy, by having EI here. Cassidy acts up, even when she is included. She knows that they are not here for her. I stress and worry and wonder what in the world they must think of us when they leave.

I believe that with Early Intervention, one of the most important pieces is the carryover. Dylan is not going to walk any sooner because he has PT for an hour once a week. I know that I must work on the things that they suggest - and for the most part, I do. I do. But sometimes, I don't want to. Sometimes I don't want to think about any of it. Sometimes I just want to pretend that we don't have to deal with delays and Early Intervention. Sometimes I just want to live our lives.

Sometimes...I get confused as to what I am doing and what is best. What is best for Dylan, for Cassidy, for me, for Dave. And I don't know the answer. I just know that I really don't like feeling the way that I did this morning after our Early Intervention session. As our ST drove away, I turned to Cassidy and said, "You know, that behavior was not OK Cass. Why did you do that?!". Cassidy started to cry, real, genuine tears, and said, "I'm sorry, Mommy.". I walked away because my own tears had started. I felt so guilty, so badly for her. But yet, we were heading out the door to her activity now - swimming lessons. She said, "Mommy. I'm trying to say that I'm sorry...". I hugged her because I believe that she is sorry. I know that it's not easy for her, but...

Sometimes, I just don't know.

Chippy

2010-07-11T19:00:00.004-04:00

The outing started out innocently enough, as most outings do. It was a gorgeous day, beautiful view, cool newly discovered playground located right on the bank of the canal...

Ah, my little girl's sweet smile. Just look at how perfectly even her top front teeth are.

She asked me if she could ride "the goat" - it was one of those spring rider things. I'm pretty sure this one was actually a sea horse, but in any case

things got a little wild, they fell out of sync, Cass and the goat (seahorse?), and sure enough

!!!

Um.

She said, "My tongue keeps going up there and it feels weird.".

Indeed.

Now we call her Chippy. Or Chip, for short.

Thank goodness it's a baby tooth...

Enjoying Cape Cod

2010-07-10T11:31:00.006-04:00

We headed down to Cape Cod for a little vacation last week and lucked out with the most amazing weather! I'm pretty sure it was sunny each and every day we were there.

Cassidy and I enjoyed our morning walks to "The Pit" where we searched for crabs and sunk our feet into the "quishy sand".

We waded and then eventually swam in the ocean while trying to avoid the massive amounts of seaweed. It was so hot that we almost didn't care anymore when it wrapped itself around our legs and ankles.

I do not think that Cassidy stopped moving the entire time we were there, except for while sleeping at night. She awoke from the fireworks once, her first fireworks experience, and the look on her face was that of pure and complete happiness.

Dylan...he did what he does.

He was especially hot, so he rested when it all got to be too much. He observed his surroundings and soaked up life.

He smiled and waved at anyone who so much as glanced in his direction. Actually, come to think of it, he smiled and waved at those who weren't looking either...

When we returned home, I carried both sweaty kids up the basement steps. I plunked them down on the floor so I could begin the task of unpacking the car. Dylan's face lit up as he began to recognize where we were. They hadn't seen their toys in a while, so everything was exciting again. They both began emptying out the toy baskets and Cassidy turned to me and said, "Awww! Our house! I missed it!"...

We are back full swing now, and are settling into a little routine again. Oh how I love going away. And the coming home sometimes is even better...

Today we celebrate.

2010-06-28T13:00:00.002-04:00

Today we celebrate extra hard.

We celebrate because on this day, two years ago, we officially met eyes with you, Dylan. In that instant I hugged you close, completely unaware of the incredible journey that awaited. Of the true, honest, love that, in time, would grow into something so big.

We celebrate because you are here. You are here with us.

Thank you, Dylan, for showing us the way. For teaching us. For being patient when we stumble. For loving us, unconditionally.

We are honored to call you our son. Cassidy's brother.

Our heart.

Happy 2nd Birthday, Dylan. I do not think you can ever know how much better you have made our lives.

We love you so much and are very proud of you.

Progress, Baby.

2010-06-22T12:51:00.009-04:00

Now that's what I'm talkin' about!

A Good Daddy...

2010-06-20T19:58:00.003-04:00

and his best guy

spending time together

at the beach

on Father's Day.

Happy Father's Day to all of the good Daddies out there.

Feeding Evaluation and a Coupla' Surgeries

2010-06-17T13:46:00.006-04:00

We met with the Feeding Team yesterday for about 2 hours. It seemed interesting and after suffering from a serious food-funk lately with Dylan, I am now feeling re-motivated to get going again. I am going to start slowly, though, and make small changes. They told me that this will most likely take a while and to think in terms of "baby steps". I mentioned that I was nervous about making too many changes as that totally backfired on me the last time.

Anyway, they left me a list of suggestions and will check back in with us again in about 6 weeks to see how everything is going.

Some things that were suggested to me (in case anyone out there is in a similar boat) were:

~add broken up Baby Mum-Mums to a favorite puree (or YoBaby) as they will dissolve and will not pose a threat if he does not chew them all the way; this will slowly introduce increased textures while maintaining safety and will also help with tongue movement
~use whole milk mixed with Pediasure to increase caloric intake and fat
~continue with different straw cups (thinner or loopier/longer straws = increased difficulty)
~dipping Nuk Brush into a juice or powdered lemonade and rubbing mouth; feed puree off the Nuk Brush
~look at Greek Yogurts; Nectar Juices; natural ways to thicken juices
~for variety and increased protein, mix stage one meats with stage 2 or 3 veggies
~add a different texture to every meal - he does not have to eat it; try food play; vary the way the food is prepared and let him watch me prepare it (we do not want him thinking that all food has to come from a jar!)
~slowly give him some single grain rice baby cereal

So, that's where we are at right now. We'll get it. It just may take some time.

As we were driving home from an appointment today, I finally found this store that I have been meaning to visit. It's called My Low Carb Life and the couple who owns the store have an 18 year old son with Down syndrome and Celiac Disease! I am really looking forward to getting to know them more as we continue on this journey...

*****************************

We have decided to move forward with getting Ear Tubes placed for Dylan. We feel it is the best decision for him at this time and will be scheduling it within the month. Unfortunately, today we found out that we will need to schedule another surgical procedure due to scar tissue forming and improper healing after his first circumcision that was done shortly after his birth. Bah! What are the chances of that happening, right?! Well I can tell you, actually. There is a 1% chance of that happening and naturally, that would be Mr. Dylan...

Good thing I am madly in love with this kid...: )

I stand corrected.

2010-06-07T13:20:00.010-04:00

A week or so ago I wrote a post about Dylan's feeding struggles. I think I may have mentioned that he doesn't want anything to do with any kind of food that is not jarred baby food.

I stand corrected.

Apparently he is quite a fan of sand.

Now...if only I could find some gluten free solid food that looks, tastes and feels just like sand box sand, we'd be on to something...

Got Tubes?

2010-06-02T20:20:00.002-04:00

So, earlier today we had an appointment with our ENT. Because it had been 7 months since Dylan's last hearing test, he had us meet with our audiologist as well.

The bottom line is that they are recommending that Dylan get ear tubes.

Oh, I don't know...Dylan's hearing has always been kind of a mystery to me.

Since his very first hearing test - the newborn screening - the results have been unclear. Some tests he's passed while others he's failed. The last two have revealed mild hearing loss most likely resulting from fluid.

I don't believe he's ever had an ear infection, but his tympanograms have never shown a clear peak as they should. It was quite obvious today that he is not hearing certain frequencies, but for some reason I'm just not sure I'm completely sold on ear tubes.

If it's necessary of course we'll do it, but I guess I'm just wondering if there are other options. Like...non-surgical ones perhaps?

Hmmm...

Any thoughts/opinions on ear tubes would be greatly appreciated. I'm just trying to gather information before moving forward with this.

Thanks so much! : )

Cassidy's Hat

2010-06-02T14:00:00.005-04:00

The downside: Having a sister means pink.

Lots and lots of pink.

The upside?

I just so happen to look good in pink.

Really,

really good.

Feeding. For the 732nd time.

2010-05-27T13:13:00.020-04:00

It seems as though right now, for Dylan, feeding is the one area where progress is, ah, not so great.

As a matter of fact, lately we are actually moving backwards in the whole progress department. Baby foods that he used to love are swatted away, yet solids are refused as well. Pureed "real" food is severely frowned upon. And I mean severely frowned upon.

Apparently I've done something to tick him off, because now most of the time he outright refuses to accept any food from me. He's OK with Dave feeding him and he enjoys Cassidy's help as well. Me? No.

Oh, there's just something about having to ask my 3 year old daughter to "please come and feed Dylan for me" that feels so...wrong.

Oh, Dylan. Don't you know that behaviors such as these:

are not helpful and have now earned you a spot on the Early Intervention Feeding Team?

Our evaluation is in a couple of weeks and while I am not that psyched about adding more to our already full EI plate, I am looking forward to working with someone (heck, working with "A Team") who may actually be able to help us.

Because this

is not working.

The 'Prinkla

2010-05-24T13:23:00.020-04:00

Otherwise known as "The Sprinkler".

After playing in it all morning, Cassidy asked to play in the 'prinkla again after we had finished lunch.

She said, "Pleeeeeeeeeeeeeeeeeease?!! I'm obsessed with it!!".

I laughed and she continued with, "But Dylan. He's not obsessed with it.".

Indeed. The unexpected blast of freezing cold hose water didn't impress him quite as much.

The swing though. He's definitely obsessed with that...

We're raising him well.

2010-05-19T13:53:00.004-04:00

How 'bout a Merlot this time Dyl?

Good boy.

Just hanging around...

2010-05-18T13:15:00.003-04:00

in the park

on a swing

with no pants on.

Just ol' Dylan

being Dylan.

Dylan

2010-05-12T09:07:00.006-04:00

Never,

never,

never,

never,

give

up.

It used to be the ball...

2010-05-05T10:29:00.015-04:00

...but now we have moved on to books.

They are Dylan's newest obsession.

I often wonder why, throughout the day, I continue to clean them up and stack them neatly under our coffee table, because sure enough, the minute I turn my back, they wind up back on the floor scattered all around him.

His favs are books that contain either bunnies (his best new sign) or books with mirrors.

Once he spots a mirror, he'll move in real close, look himself in the eye and smile. "Hey! I know you!".

I absolutely love that Dylan is motivated by books. As I read, "Simple Fist Words: Let's Talk" to him the other day, I realized that he does know ALL of these first words. He may not speak them, but he can sign each and every one. He knows what they are and he understands their meaning. He IS learning! His vocabulary is increasing every day as is his desire to communcate with us. It is such an amazing skill to witness. I am so grateful that he has the motivation to learn and that he has such an interest in gaining knowledge through books.

Cool, cool stuff...

You know those days?

2010-04-29T14:00:00.013-04:00

The ones when you feel really really good about your early intervention sessions? They don't always happen. At least for us, they don't. But today we found success and oh, how I LOVE those days!

Today we started out with physical therapy and wouldn't you know that our PT had Dylan vertical?!!

It felt so odd seeing him upright like that, as I am completely used to seeing him swiffering around the house. Seeing him standing like this...

...it brought tears to my eyes, it really did.

I understand that it may take some time before the little guy is able to do this independently, but oh how I LOVE to see progress!!

Then this afternoon: OT. I'm not quite sure I can express how conflicted I often feel about Dylan's feeding. Some days he does well, most days he does not. Today? It was a good day. A very good day.

His OT guided him with self feeding. Self feeding?!! Seriously?

Guided standing and guided self-feeding in one day.

It all makes me feel exactly like this:

You GO Dylan! I am so very proud of YOU.

A Little Boy...

2010-04-24T15:02:00.025-04:00

and his Daddy. And his Daddy's hat.

Hiya Ma!

That's enough for me. Your turn now Daddy.

This...

2010-04-22T13:17:00.003-04:00

...is spring in our back yard:

Enjoying the weather at 4:30 on a Wednesday evening.

The slide and swings, bubbles, long grass, the sandbox, sandals, dandelions...

Delicious fresh air. Ahhhh, we LOVE it!

Advocating for Adoption

2010-04-20T13:30:00.020-04:00

Shortly after Dylan was born, I unsuspectingly came across Reece's Rainbow. Reece's Rainbow is an international orphan adoption ministry. Oh, I used to peek at it every now and then and wonder...

Time continued on and as things in our own lives began settling down, I became even more interested in visiting the site. Recently, I have also begun following others' journeys who have chosen this adoption path. Some are just beginning the process and others are in Eastern Europe right now bringing their Little Ones home.

Dylan's friends Joaquin and Bridget will soon be welcoming their newest sisters home. You may follow their journeys at Saving Sofia and Loving Alina. I have also discovered a blog called No Greater Joy Mom. I do not know Adeye, the woman who writes this blog, but I have found her story extremely...powerful. Take a look...

*

While scrolling through the cuties on Reece's Rainbow one day, I came across Sergey. He immediately caught my attention because he looks like he could be Dylan's twin brother!! The other day I was looking at the site again and Cassidy caught sight of Sergey and said, "Hey! That looks like Dylie!".

I emailed Andrea and asked if I could be an advocate for Sergey. She said of course, so here I go. I'm not exactly sure what I can do to help this sweet boy, but my hope is that by getting his little face out there, someone may feel inspired to donate to his adoption or possibly even feel pulled to bring him home.

It's imperative that he is brought home. You see, orphans with a disability in Eastern Europe are transferred to mental institutions shortly after their third birthday. They are tied to their cribs and left to die. It's horrific. It's their reality.

We need to help, in any way that we can.

On Adeye's blog the other day, I read, "Every child deserves the loving arms of a mommy to hold them tight..."

"Every single child.".

Grab This Button

PT Stuff

2010-04-16T12:48:00.009-04:00

Dylan is now sportin' some SMOs. Yep he is.

Pretty cool, eh?

Originally I wasn't sure whether or not we should get orthotics at all(as I had written about in this post), but after meeting with our orthopedist as well as our orthotist, and then talking a bit more about it with our PT, we have decided to give them a try. I know that Dylan is motivated to pull to stand, but still lacks the strength to do so. Hopefully, his SMOs will give him a little bit of extra stability and strength...we shall see.

*

Recently, to his delight, Dylan's PT has begun bringing a scooter with her to our visits. It is hard work for him (especially when he is on his belly), but he totally loves it!

Here he is telling her to "GO!"!!

Weeee!

Oh...you know that Cassidy could not refuse some of the scooter action!

We LOVE our PT so much!!

Show me a sign.

2010-04-13T19:30:00.011-04:00

Here are some of the signs that we've been working on lately with Dylan:

He is totally into it! And to be perfectly honest, we've learned all of these signs from watching the Baby Signing Times dvds. We are up to volume 4 now and just love them!!

Hm, I wonder if Rachel is looking for new faces for possible upcoming dvds...? : )

And this face?

Oh, I could NOT pass up an opportunity to show off "The Funny Face"!

And then you see it.

2010-04-11T14:54:00.001-04:00

Time travels on so quickly, I feel like. And as it passes, I sometimes wonder whether or not I can see progress with Dylan. It's not that I am specifically looking for it or anything (ok, sometimes I am), but I guess it's more that usually I don't notice much difference on a daily basis. And I suppose when you are asked each week by Early Intervention what he is doing "new", you are frequently forced to think...and wonder. Progress...?

But something is happening, it must be.

All along, it must have been happening. Even when I could not see it, progress was being made. Little tiny bits of it, every single day.

Because recently, I can see it very clearly. A change. I can't quite put my finger on what exactly has occurred to trigger this sudden observation, though.

He seems older to me now. More mature. He's more aware and interactive, I think. His personality is totally beginning to blossom and his opinion is certainly being shared, and quite loudly, too.

Eh, maybe it's the hair cut, after all, I was fair warned by the hair dresser that he would no longer look like a baby after she buzzed it. Or maybe it's the fact that he is becoming more mobile. He tries to climb on me now when I sit next to him on the floor and is now an old pro at getting into and out of the sitting position. He doesn't just sit anymore. Maybe it's that he is beginning to sign now as a means of communicating with us. He does not hold back in letting us know what he wants - to play ball, read a book, drink his milk, eat, go outside...

Maybe the pieces are beginning to fit together. Maybe the progress is significant enough for me to see now.

Or maybe I just wasn't paying enough attention before to notice the small gains.

Progress, growth, strength, understanding.

My guess is that there are little bits and pieces working and coming together every single day, whether we can see them or not, they are there.

To know that and accept it is important, I think.

But when it does come together and we do see it...it's so amazing.

Another Ordinary Moment

2010-04-06T14:27:00.010-04:00

It's funny. As times continues on, I find that I've been struggling a bit with what to write about here.

In the beginning, it wasn't like this. Oh, I used to easily pop out post upon post with various concerns, questions, uncertainties, struggles, fears.

But now. I don't know. More and more, day by day, minute by minute, our lives are filling up with ordinary moments.

Moments that I wonder whether or not are significant enough - or blog-worthy enough to post.

But they are! To me, they are!

They are because these ordinary moments are what make up our life, now. And within each ordinary moment is...something. Beauty, love, meaning, growth, purpose.

And that is significant. Sure, it may not be the most exciting thing in the world to read about Dylan's newest sign or what Cassidy said the other day, but it's our life.

And sometimes it's ordinary.

And I love it.

It was time.

2010-04-02T12:54:00.010-04:00

Oh yes, it was time.

Er, maybe it was loooong past time...

Voila!

Little

Stud

Muffin!

If I do say so myself.

Ramblings About The Beginning...

2010-03-31T12:00:00.003-04:00

Every so often, for whatever reason, I think about the beginning. Not the very beginning, but the second beginning. The transfer, the NICU. The time after we knew about the Down syndrome and heart defect. It makes my head hurt, but I think about it anyway...

Dylan was discharged from the NICU after a 5 day stay. Really, he still shouldn't have even been born yet. His due date was weeks away, but there he was, in his car seat, dressed in his going home outfit. I held on to the handle of the car seat carrier and walked with him out of the NICU. Dave was ahead of us, our thoughts filled with Down syndrome and heart surgery, low muscle tone and Early Intervention, failed hearing tests and our daughter who waited back home.

We filed into the elevator and I looked down at Dylan. His head was completely flopped over. I sighed and tried to straighten it, but it flopped again. There was a nurse in the elevator. Actually I think there were many people in there, but it was the nurse who looked at Dylan and said, "Oh! He is SO cute!! Congratulations!". More "ooohs" and "awwws" chorused. Tears stung my eyes and I'm sure my face probably reddened. I was so... Sad. Confused. Ashamed. Hurt. Congratulations!? Really?!! I forced a smile and looked at the floor. Dave didn't say anything. We were being rude and I didn't care. I thought the nurse was lying and figured that they were all just trying to be nice. Congratulations for having a baby with Down syndrome? With a heart defect? I wanted to tell them all to just be quiet. Just let us be.

Later, when we got home, I walked over the the countdown ticker that had been sitting on our table since I had found out I was pregnant with Dylan. It read, "Your baby is due in: 14 days...". I cried.

I kept the ticker there on the table. I let it tick all the way down to Dylan's due date. I remember looking at it often, as it counted down, and wishing that somehow it was true - that it didn't already happen and that Dylan - the Dylan who I had been planning for throughout my pregnancy, was still in my belly and would be born soon and everything would be...normal.

Finally, the countdown got to 0 days and still the ticker sat on the table. It gathered a little bit of dust as it stayed on 0 days for weeks until finally, one day, my mom casually picked it up and put it away.

~

I think I will always remember that...but in so many ways I wish that I could forget it. Or maybe it's more that I wish it never happened that way. It makes me feel shallow and horrible and uncaring. I wish so many things had happened differently. How I wish that back then, I could have been the person that I am now.

Looking back at the second beginning, after "we knew", I feel very much as if I was unable to see Dylan anymore beneath all of the layers that had begun to cover him up. Little by little, in those beginning days, layers of Down syndrome, heart defects, low tone, Early Intervention, failed hearing tests...they covered up that little baby who had just been born. I lost sight of that little boy in there and because of those many layers, I began to close myself off to the possibility of love. Fear took over. Fear of what I did not know, fear of what I thought I knew...

I regret that, oh how I regret that.

But I did peel them back. Eventually, layer by layer, I began to peel them back and underneath was that same sweet little boy, the one who was exactly who he is suppose to be, waiting for us...

~

I am thankful for the nurse who congratulated us that day in the elevator, because we should have been congratulated. A new life, a life that is worth living, a beautiful life, is truly a blessing...and of course is something to celebrate.

Week: In Review

2010-03-27T12:09:00.018-04:00

The high (and not so high) lights:

We got a brand new swing set, Dylan got a cold, I unpacked our bags from the cape. We ate clams that were gathered by Martha, did mountains of laundry, and watched American Idol. I got a cold, we went to gymnastics class and the orthopedist. Dylan got conjunctivitis. Cassidy went to school (not exactly agreeably), Dylan had speech therapy, Cass fell off her swing on the new swing set and bruised her nose. Cassidy got conjunctivitis and built forts with our couch cushions. We made peanut butter and jelly sandwiches together.
I gathered and mailed some important paperwork, and met up with a friend I had met online years ago and to my delight, discovered that we share a special common bond.
I overheard Cassidy, as she jumped up and down on the couch, singing "Imma Be" by the Black Eyed Peas. Our play kitchen fell on top of Dylan and left a bruised forehead. My mom flew in from Wyoming. Dylan had PT, our dog swallowed a large rock and Dave got a cold. Our other dog discovered a lovely spring swamp near our house.
I enjoyed my afternoon cups of coffee while outside the weather fluctuated between warm and sunny and cold and snowy.

And Dylan - he discovered yet another way to avoid eating food. Because placing it atop your head is so much more enjoyable...

And wouldn't you know that that, is the only picture I took throughout the entire week?!

Confession

2010-03-23T14:00:00.005-04:00

So...I've been feeling badly about not posting anything on Sunday - World Down Syndrome Day.

Well, maybe it's more so that I've been feeling badly that I actually forgot that it was World Down Syndrome Day. I feel like a pretty terrible advocate, to be honest. I mean, I knew about it, I knew that it existed and that it was coming up, but then when the day was actually here, I forgot...

It may be because I have a pretty poor memory.

Or it may be that when our lives are filled with such ordinary, beautiful moments,

the words Down syndrome do not even enter my mind...

~

That was Sunday.

And then there are other days, days like today, when Down syndrome is right there, front and center.

It's raining again and I've been on the phone with Aetna for over an hour today. We just recently got back from an orthopedic appointment and I'm curious (and by 'curious', I mean 'stressing the heck out')about how much Dylan's orthotics will wind up costing us.

Oh, the medical stuff. Now that's the stuff that gets to me. I'm not just talking about the time required for these appointments, but also the cost of each one. I mean...seriously? I'm all about therapy and being proactive, but at what cost? Over $350 for a 4 minute GI appointment in which nothing is accomplished? "Dylan's doing well? Great! So, let's continue on with the Prevacid and we'll see you again in, say, 2-3 months?". Oh, and that dietician that we just saw? Er, $364. And if your kiddo needs any kind of surgical procedure? OUCH.

Our insurance isn't great, but it's also not terrible. And we have been incredibly lucky that Dylan has been a relatively healthy kid, too. Oh, I know I'm preaching to the choir here, but...sigh.

It just makes me feel sad that we, as parents of kids with Down syndrome, have to pay so much money to do what's best, no - what's necessary - for our kids. Since most children who have a diagnosis of Down syndrome are typically prone to medical challenges, why aren't we eligible for better (ahem, and cheaper!) medical coverage? I just don't get it. It's not right.

Sorry to be so cranky. It's just that every now and then, the medical stuff just makes me nuts...and I wish, so badly, that I could actually do something about it.

But...onward and upward we go.

Steps

2010-03-22T11:00:00.016-04:00

Shortly after I published that post about "Turning a Corner", we began, little by little, backtracking. And before I knew it, we were exactly where we were before - that old street - the one we were on before we had supposedly turned that corner.

Dylan is back to dropping food. He doesn't eat it anymore or seem remotely interested in anything that we offer him. He won't even allow me to place the food into his mouth. He makes a bad face, tunrs away, swats...

And as I was thinking of this last night, one word popped into my head:

Steps.

With Dylan, we are always taking steps. Every now and then, we will take a huge one, but mostly we take small ones. Each day, small steps of progression. But, as is the case now, there is the occasional backward step. Just when I think he's got it, back, back we go.

It's confusing and it's frustrating.

But, that's how it is going to be with feeding, I think. That's how it's always been with feeding and it's important that I begin to accept that. And I think I am getting there, I really do. I do not get nearly as frustrated as I used to. Because I know that he will get it, regardless of the types of steps it takes to get there. I mean, he has gotten it...now we just need to learn how to keep it.

I remember a couple of months ago, I had randomly mentioned to Dylan's OT that he used to say "mama" all of the time, and then suddenly stopped. He preferred to say "dada" instead. It then occured to me then that he also used to sign 'milk', but had stopped that as well. After I told her this, she looked at me with a very serious expression - one that I had recognized all too well, one that we'd experienced many times throughout Dylan's first year. My stomach dropped to the floor. She said, "We take that kind of thing very seriously. Regression. It's not good, Laurie.". My faced burned with...fear? Anger?

So wouldn't you know that right after she left, I popped open my laptop and googled "regression" and "Down syndrome"... And, well, you know that's never a good thing...

Oh, I don't know. Maybe it's more, maybe it's not - this "regression". I prefer to think that it's all just about steps, though. Small, medium, big, tiny and backwards.

Come to think of it, maybe these so called backwards steps are more like practice steps. Maybe they don't have to come in sizes or go in particular directions. Maybe it's just that this particular skill, feeding, isn't fully mastered and thus appears to come and go...and with these practice steps will eventually come true success...

For right now, though, it's jarred turkey and rice. Oh, lordy...

Enjoyment in the Driveway

2010-03-17T10:29:00.006-04:00

You've just got to love a kid

who can find

this much humor and enjoyment

while simply sitting

in

a driveway.

We are turning a corner...

2010-03-16T13:31:00.005-04:00

...with this feeding stuff, I think.

Ever since beginning solids with Dylan, we've had our share of struggles. For over a year, Dylan had battled what we thought was severe reflux. However, after various procedures and then finally an endoscopy, we have come to understand that there is a high likelihood that Dylan has Celiac Disease. I have since stopped giving him anything with gluten and have seen remarkable improvements. Seriously remarkable.

So, once we made the decision to put Dylan on a completely gluten-free diet, we then had to begin getting Dylan more comfortable and controlled with gluten-free table foods.

For the longest time, whenever we placed any type of food on his tray, he would pick it up, ever so gently, look at it between his little fingers, and then proceed to fling it (quite forcefully, too!) across the room. That gradually changed to picking things up, again, gently, and leaning his arm over the side of his booster chair and dropping the food down to the dogs waiting below. He was gaining more control, but still wasn't eating anything.

Each time I tried to put the food into his mouth, he would either spit it out or would choke and gag on it.

We took small breaks, but gradually, always came back to it. I switched our OT from every week to every other - it was beginning to become a stressful situation and I knew that that wouldn't help.

Then, very recently, Dylan got quite sick, so again, we took a break. When we came back to it this time, it was different. Something clicked. He began to put the food in his mouth, chew it and swallow. He appeared to enjoy it as well. And, just like he does now when getting into sit, every time he puts a piece of food in his mouth, he cheers for himself! Many times now, I have put small pieces of food on his tray and have walked away, only to look back at him and see him sitting there clapping away - obviously proud that he's accomplished another skill.

A couple of weeks ago, we had a visit with a dietician through Children's Hospital. She gave us some decent gluten-free food ideas to try with Dylan. So this weekend, Cass and I headed to Trader Joes to see what we could find for Dylan. (Ahem, and for us - and can I just say - those chocolate covered pretzels are RIDICULOUSLY amazing?!!)

They had a pretty decent selection of gluten-free foods to choose from and it felt good, looking for real food for Dylan.

He's done well with what we've tried so far. Gluten-free English muffins, mac and cheese, pancakes, waffles...

He's getting there, he is. We have definitely turned a corner - I can see progress, now, whereas for a while there, I wasn't sure I could, and that concerned me. I remember mentioning before that we had been blazing through about 9 jars of baby food a day and now, little by little, we are moving away from that. And that's a very good thing...

*

Do you have a child with Celiac Disease? If so, I would love to hear some suggestions for food ideas. I'm building a list, and would love to add to it. : ) Thank you!

Yes!! Cont...

2010-03-14T14:53:00.007-04:00

Right before bed last night, I was able to capture Dylan's new skill on video!

Ahhh, this is such a huge accomplishment, it really is. And means just so much more, as it was not easily achievable for us. Dylan worked hard, and as it goes, once he was ready, he did it.

Dylan totally knows he should be proud, too. Every time he gets into sit now, his arms fly up in the air as he cheers for himself...

Love it!

Yes!!

2010-03-13T19:16:00.003-05:00

Tonight as we played on the floor, I looked over at Dylan. He was lying flat on his belly across the room. He glanced up at me and started to point to his wrist. I was confused, but said, "Time? Time, Dylan?". He then proceeded to push himself UP TO A SITTING POSITION!!! So, not only did he independently get into sit(!!!), he had tried to sign "sit" before doing it!!

Moments Like That = Absolutely Amazing

Hopefully I can get it all on video tomorrow! I'm SO excited! You GO Dylan!!

And just like that...

2010-03-11T16:20:00.008-05:00

This:

The sun has disappeared, the temperature has dropped, the raindrops begin to fall, and the window gets firmly shut. Dylan refuses to nap and Cassidy has decided to empty every possible basket of toys that we have in our entire house. The forecast calls for more rain.

But, it's all good. Because among the many other things to be happy about,

we've got these.

And that, is a very, very good thing.

Isn't it the best?

2010-03-10T20:39:00.017-05:00

This:

That perfectly almost-warm, extra-sunny, pre-spring kind of day.

The day when you can finally crack the windows a bit and welcome some much needed fresh air.

The day when you can play outside, while soaking up the sun, without the hassle of the million winter layers.

The day when you watch your daughter re-learn how to ride her Dora big wheel, noticing that this time her feet reach the pedals. Helping her get situated, all while your son looks on, as he samples sand from the driveway, clapping.

The day when you feel for certain, that you have made it through another winter and that indeed, spring is close.

You wear your running sneakers instead of your Uggs and feel...perfectly well. You eat peanut butter and jelly sandwiches and pickles with your best girl, because she asks you too. You clean out your car. You feel motivated and productive.

There is a sure sense of good things to come.

Ahhhhh. Isn't it the best?

The Slide

2010-03-08T20:00:00.006-05:00

So, recently I have found myself worrying, as I sometimes do.

I have been trying to figure out how this whole playground experience will work out once the weather improves. I want, so badly, for Dylan to be able to actively participate in his surroundings. I know that he'll want to be down, on the ground, moving around with everyone else - playing, climbing, sliding! And honestly, the ol' guy is getting heavy now, and it's quite difficult holding him for long stretches of time. Ahh...If I could, I'd put him down, absolutely I would. Unfortunately, though, I'm not sure how well it will work out with him swiffering around the playground on wood chips.

Well, to our delight, it was absolutely beautiful this past weekend! Yesss! We decided to take a drive to the beach,

where we wound up discovering a playground that we hadn't seen before. Dave and I alternated holding Dylan until Cassidy started going down the slide. Oh, Dylan was so excited watching her go down and then back up. Down and back up. He was trying desperately to escape from my arms, so we let him go.

And as I watched him play, I realized, as it usually does, it all worked out just fine. Better than fine, actually. It was wonderful.

And those wood chips? I'm pretty sure Dylan can handle 'em.

He's back!

2010-03-05T19:11:00.010-05:00

After a week of horrid sickness, he's finally back to his old self.

And his old self

is a beautiful, beautiful thing.

It's a...

2010-03-04T08:17:00.004-05:00

BLOGOVER!

I knew that I was feeling ready for a change, and Bethany came to my rescue!!

Thanks so much, Bethany!

Today

2010-03-03T13:31:00.009-05:00

Spread the Word to End the Word

Today, will you try to be conscious of the things that you say? Will you think about the words that you use and how they may negatively affect someone? Will you try to practice respect, acceptance, unity, humanity and passion? Will you watch this clip again and try, try, try, to be open to people?

Think about it.

Will YOU help us to Spread the Word to End the Word?