Tuesday, November 8, 2011

Cassidy

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.

Friday, November 4, 2011

Hope for Tristan

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...

Monday, October 24, 2011

Tonight

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.


video

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.

Tuesday, October 11, 2011

Birthdays, Bikes, Buddy Walks, and Bridges

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...

Tuesday, September 13, 2011

He can do it.

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.
video

I totally caught him!

video

His face says it all.

video


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.

Friday, September 2, 2011

And just like that...

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


Dylan


learned


how


to


STAND


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

Friday, August 26, 2011

I'm feeling it.

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...

Friday, August 19, 2011

Because it IS our problem.

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.

Saturday, August 13, 2011

The Dora Big Wheel

"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...

Wednesday, August 10, 2011

Summ, summ, summah time.

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.

Sunday, August 7, 2011

He surprises me.

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.



video


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!

Wednesday, August 3, 2011

I'm not ready.

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...


More posts to come...

Tuesday, June 28, 2011

Today.

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.

Saturday, June 25, 2011

Three.

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.

Thursday, June 9, 2011

Patience

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!