Friday, October 31, 2008

We did it!

Whew, 31 straight days of posting and I'm exhausted!

Dylan and I just want to thank you all for taking the time to read our blog. The support and encouragement that has been given has meant the world to me.

Please remember to think of Dylan Ross on Tuesday as he undergoes open heart surgery.

Thank you all so very much.

Thursday, October 30, 2008


Yeah! We are back from Dylan's pre-op appointment! It's been a long day, but Dylan did very well. He was such a brave little guy.

To make a long day short, here is a recap from the sweet boy himself:

I had a sedated echocardiogram, an EKG, and lots of x-rays. I then had some moments of discomfort while the nurses struggled unsuccessfully to find veins in both of my arms for the blood draw.

This is how I felt after all of that poking and prodding:

After the bust of a blood draw, I took a trip to the PICU with my Momma and Daddy to have a nurse take bood from a vein in my head. That wasn't too much fun.

My Momma and Daddy spent alot of time talking to doctors, cardiologists and anesthesiologists.

After getting stuck for a little while in the parking garage elevator, we finally got to drive home! This is me on the drive home from the hospital. Whew, I'm exhausted!

Wednesday, October 29, 2008

Well...that was annoying.

You know those days where you are just not in the mood for the Early Intervention people? Even though they are here to help, sometimes I just feel like being left alone. Today was one of those days. I house is a wreck and my pajamas are still on. Do I really need to deal with this today?

It was suppose to just be Dylan's nurse today, but for some reason she brought a PT with her that I had never even met before. Keep in mind that we have Dylan's pre-op appointment tomorrow and his heart surgery on Tuesday. My mind isn't exactly on PT stuff at the moment. And that is exactly what she wanted to talk about. Well, that and the fact that Dylan needs to work on not tensing up his lower body and needs to continue working on tummy time as soon as humanly possible after his surgery. Ugh. Good grief. Can I please just get through the surgery before worrying about all this other stuff. And can my baby please have some time to heal his little body before jumping back into the tummy time routine. Please.

Blech. My kids were happy as clams before they got here and by the time they left, Dylan was exhausted and hungry and Cassidy was flopping herself all over the floor becuase she didn't like the way that the PT rolled Dylan up in her blanket.

My head hurts.

Tuesday, October 28, 2008

4 Months!

Dylan is 4 months old today! Look at how far he's come.

month 1:

month 2:

month 3:


I could not be any more proud of you, Dylan. I love you more than words can say.

Monday, October 27, 2008

A little update on the pre-op stuff

Thank you all for your wonderful comments yesterday. I truly appreciate each and every one of them. And while I certainly appreciate the comment that was in German, I can't say that I understand what it said. However, assuming it was something helpful/nice/funny/wise, thank you as well! Haha.

I just wanted to post a quick update about the pre-op stuff. I called the pediatric cardiologist's secretary today and asked about the whole sedation thing. I asked if it would be o.k if we tried the echo without the sedation first and if it didn't go well, then moving on to the sedation. I told her that Dylan has had 3 echos in the past and has never had to be sedated. He has always done very well. She said that we could try it, but to come prepared for the sedation - ie. not feeding him 6 hours prior to the echo. Um, wait just a sec, 6 hours? I told her that I was told 4. Her response: "Oh right, 4. Yeah, sorry. Is there anything else I can help you with?".

Gr. I really can't stand it when I am made to feel like an inconvenience just because I am concerned about my baby.

Anyway, like Jen said in her comment, I do realize that in the big scheme of things this is small potatoes. My baby is about to have open heart surgery and I am worried about a little sedation. I don't really know why I'm choosing to worry about this. Maybe because if I worry about this, then I'm not thinking about the BIG know...the heart surgery.

Sunday, October 26, 2008

Pre-op Woes

Dylan's pre-op appointment has been changed to Thursday, October 30. I got a letter in the mail explaining everything that they would be doing on this day.

Here is what it says:

"Dylan is scheduled for a sedated echo at 10 am on 10/30. He will then have a History and Physical, blood and urine tests, chest x-ray, and EKG. You will meet with the surgeon, the anesthesiologist and will tour the Pediatric ICU. We will confirm the surgery date and have you sign consent forms."

So, along with ten thousand other concerns about this appointment, one of my big ones is the sedated echo. I am terribly uncomfortable with this. I don't like the sound of it and I don't like the whole idea of it, either. I was told by the secretary that Dylan would have to be finished eating 4 hours prior to his echo. You know...I just do not want to have to let my baby go hungry. And then drug him. Ugh.

Does anyone out there in the blog world have any words of wisdom for me regarding the pre-op? I'm stressing out. Big time.

As always, thank you so much for reading. And for your continued support.

Much love,

Laurie and Dylan

Saturday, October 25, 2008

Happy Halloween! was Halloween in my neighborhood tonight at least.

Look who joined in on the festivities! A Jack-o-Lantern and his big sister, Bunny Rabbit.

Friday, October 24, 2008

Heart Stuff

These days, I would say that about 90% of my thoughts are consumed with Dylan's heart stuff. These thoughts are of the positive and negative kind.
I have been reading a little bit more about the surgery that Dylan will have. If you are interested, you may find some information about correcting an AV canal defect here.
I've also checked out some additional information as well as some post-op photos here.

It is so difficult to put my feelings about all of this heart stuff into words. I feel like I am on a roller coaster ride, and it's not stopping. There are some huge hills and some tiny ones. Some days I feel at peace with Dylan's surgery. I know that it is for the best and I feel pretty good about that. But other days, and these are definitely more frequent, I want so badly to pick up the phone and cancel the whole thing. Call it all off.

At this point, what I want to do is to go into this surgery feeling positive, hopeful, confident. I want to be strong for my son. I want to believe that everything is going to be fine.

I do not want my thoughts to be consumed with fear and worry. Unfortunately, I am a worrier by nature. Have been my whole life. I think this is why I have been trying to read up on the surgery and why I have looked at difficult pictures of babies who have had this same procedure. I do not want to be surprised. I do not want to worry about what I may not know. I want to be prepared. I want to know what lies ahead, so that I can be strong.

I know there is no way to completely alleviate the fear, but if I could just let a little bit of it go, and replace that little bit with hope, I can be a better and stronger mom for my son. to go about doing that?

Thursday, October 23, 2008

Go us!

Ahh. A new day. With Tuesday's fiasco behind us, we're moving on and we're doing just fine. We've even managed to have a little fun today.

Dylan was an OT rock star today! Here are some notes from his therapist: "Dylan did great today. Was wide awake and ready to work. We worked on different positions, worked on tracking, reaching and kicking. On his back, he turned head about 45 degrees to both sides and is trying to bat at objects. On belly he is starting to turn head about 45 degrees in both directions. Upright head control is better. At least 30 seconds without a head bob."

I am SO proud of him! Here he is working on keeping that head up. This is no easy task for a little one with quite low muscle tone. Go Dylan!

After his OT, he was very tired and fell asleep. Cassidy and I ventured outside. And froze.

Wednesday, October 22, 2008

I'm pretty sure...'s safe to say that we are in "survival mode" in our household at the moment.

If I am able to get anything else accomplished in the next week, in addition to getting my children clothed and in clean diapers, as well as fed and bathed at the appropriate times, I will be pretty darn pleased with myself.

Case in point: this is the state my house is in at the moment. Cassidy had managed to create this total chaos by 9 in the morning. Ahem.

Why am I falling apart at the seams? Well, with my little boy's surgery hanging over my head, I am not exactly what you'd call emotionally stable.
But let's get back to yesterday...

I spent the better part of the afternoon and evening on the phone with Dylan's cardiologist and his Early Intervention nurse trying to figure out why his hands and arms were purple. They were concerned that this may be his heart going into distress. After answering a million questions about Dylan's state over the past few days, I had to decide if I wanted to take him in, (not easy considering I am still without a car...but that's another story) or monitor him further. I decided to keep a close eye on him and was told to call if anything else looked "off". I wrapped him up in blankets and turned up the heat...and watched him. Thankfully, a few hours later his coloring normalized. Whew.

While all of this was going on, I had found my dog lying in a puddle of blood. Dave had to take her in to the vet at 7:30 last night to have an infected mass (blech) removed. She is now sporting the lovely lampshade. She is not very happy about it, but then again, we aren't all that thrilled about the stained carpets and the surgery bill, Bailey.

Ah well. At least one person isn't phased by the madness.

Tuesday, October 21, 2008

Sweet Boy

Dylan's heart surgery is in two weeks.
In honor of my sweet boy, I made a montage in celebration of his first 4 months of life.
You may view it here.

Lots of love,
Laurie and Dylan

Monday, October 20, 2008


When Dylan was in the NICU, Dave and I were constantly being told conflicting information as to whether or not Dylan would be getting an echocardiogram. One day we would go in and be told that it was not necessary. By that afternoon we would be told that he'd definitely be getting one as they were detecting a slight heart murmur. The next day, same thing. Yes he'll get one, no he won't. And the next and the next.

Finally, on one of his last days in the NICU, they did give him an echo. And I happened to be sitting right there with him when they showed up to do it. I was able to watch the whole thing and it was amazing. I was not nervous, though, as I had been reassured that everything was probably just fine. Well guess what? Everything was not fine. In fact, they found that Dylan did indeed have an AV canal defect and would require open heart surgery.

When the cardiologist came over to explain everything to me, I swear he could not have sounded any less concerned if he tried. He said that Dylan had a hole in his heart that would not close on its own. He said that his heart would need to be "corrected". He then took out a pen and drew two hearts on the back of a pamphlet I had received about Down syndrome while in the NICU. He showed me what a normal heart looked like and then what Dylan's heart looked like. While he was talking I obviously should have been listening, but instead found myself thinking about how calm and unphased he appeared to be by all of this. He was so completely mellow and...almost bored by having to explain all of this to me.

At the time it bothered me. I remember thinking, how does this doctor not care? Why isn't he worried? Why is he acting like this is not a big deal?

What's funny is that now, every time I am feeling especially anxious about Dylan's surgery, I think about that cardiologist. I think about his tone, his confidence, even his boredom. I think about how he used the word "corrected". I like the use of that word because it is much less scary for me to think of Dylan's surgery in that way. I think about how they almost didn't even do an echo because Dylan appeared to be doing so well. He was and still is strong and healthy! All of these things bring me down and make me feel comfortable and safe.

Now when I think about the interaction with the cardiologist, I believe that his calm tone did not mean that he didn't care. I believe it meant that he has seen this all before. He has done this same thing many many times. This is not shocking. This is not new. These doctors know what they are doing and it's going to be OK.

I have to believe that.

Sunday, October 19, 2008


I came across an inspiring article a couple of days ago. It is about John, a male high school student with Down syndrome, who was recently named Homecoming King. You can read all about it here.

After reading this article and viewing the video, I got the impression that this young man is very much accepted by his peers. He is more alike than different and they know this. This was not a pity vote. He is well liked. He is one of them. He is accepted.

This is what I want for Dylan. Acceptance. Happiness. Love.

Saturday, October 18, 2008

Wondering About Speech

One of my recent curiosities with Dylan and with people with Down syndrome in general, involves the issue of speech...I'm talking about general speaking skills and the pronunciation of words. Nowadays, with Early Intervention so commonly used, why is it that some people with Down syndrome still seem to struggle with speech? Why is it a challenge sometimes to understand what they are saying? Is the difficulty due to low muscle tone? I have wondered about this before, but as I was watching Daniel Drinker's videos, it got me thinking again.

For those of you who have older kids with Down syndrome, how is their speech? Do you find the Early Intervention speech therapists helpful? I know that we won't be starting the speech portion of E.I for another few months, but I'm just wondering about it...

Is there anything that I can or should be doing now or in the future to help Dylan in this aspect?

Friday, October 17, 2008

Good night.

Wow. It's late and I'm tired. I used all of my "free blogging time" today getting lost in Daniel Drinker's blog. Have you seen it before? If not, I highly recommend that you check it out. I've added it to my blog list.

Yes, yes. I know this doesn't really count as a blog entry. I will try to do better tomorrow. Today know. One of those days.

Hey, at least Dylan got to have a little bit of fun. Here he is swinging on his outdoor swing for the first time!

Thursday, October 16, 2008

Big girl in a little toy...

Sung to the tune of, "Fat Guy in a Little Coat" from Tommy Boy. Ahem, anyway...

Now that Dylan is on the scene, Cassidy has taken a new liking to all of her old toys. She's been having a grand old time...

In the bouncy chair:

The swing: And The Bumbo:

Two year olds are just pure entertainment!

Wednesday, October 15, 2008

Wordless Wednesday

Well...maybe just a few words if that's ok.

I really love this kid. My sweet Dylan Ross.

Tuesday, October 14, 2008

Hardest Thing

We got a call today from Dylan's surgeon with the date for his pre-op appointment. It will be on Wednesday, October 29th. While I knew that they would be calling soon with a date, it still hit me like a ton of bricks. It is all too real now and I am scared.

Dylan's open heart surgery is in exactly 3 weeks. Gulp.

Last night Dave and I were sitting on the couch watching tv and he turned to me and asked, "What is the hardest thing you have ever done in your life?". I asked him if he meant emotionally hard or physically hard. He said, "Both.".
Ok, let's see. Physically it would have to be giving birth. Twice. But, then again, that marathon I did a few years ago wasn't exactly a piece of cake either. But, yes I'll go with giving birth. That is the hardest thing I've ever physically done in my life.
Emotionally I would have to say...this. This right now is hard for me. This time in my life. This whole surgery thing. The waiting and worrying and wondering. Having to wait for my son to have his open heart surgery is the hardest thing that I've ever done in my life.

I know that he will benefit from this, yes I do. But, it just twists my stomach all up thinking about what he will be going through. He seems so healthy right now. I can't help but wonder...yeah, but, do we really need to do this?

I know, I know. We do. And we will. And some day I will look back at this time in my life and wonder how the heck we got through it.

Monday, October 13, 2008

Buddy Walk Pics

So, as I already rambled on and on about yesterday, we attended our first Local Buddy Walk! While it was an emotional day for Dave and me, the kids had nothing but fun times! least Dylan anyway. Cassidy wasn't feeling well and had a bit of a rough time as the day wore on and she was left without a nap!

In any case, here are some pictures from the big event.

Cass and Dylan all ready for the big walk.

The man of the hour!

There we SO many people!! He is just a tiny part of a loooong line of people in front of us.

Dave and the kids. Yes, we got there too late and missed out on the t-shirts : (

Me and Dylan..

Sunday, October 12, 2008

Emotional Day

Today we attended our first official event in the world of Down syndrome. We attended our local Buddy Walk.

This morning, I wasn't sure if we would wind up going. Unfortunately, we have a bit of a sickly household at the moment. Cassidy, Dave and now Dylan are all sick. Aw, poor ol' Dylan. He just couldn't quite escape the germs which have been flying rampant around the house.

We decided to give it a shot anyway. So, as we were driving there, I was feeling both excited and nervous. I was genuinely excited to see other children with Down syndrome. I mean...really see them. Before I had Dylan, of course I had seen people with Down syndrome, but I had never really given it much thought. Now, it is my life, our life. And I'm pretty sure that these days I give it more than enough thought!! I was nervous because I guess this was our way of admitting that our son has Down syndrome. Yes, I know we've known this for 3 months, but this was my and Dave's way of....accepting it maybe? Our way of putting ourselves out there, for everyone to see. I was nervous to see other children who may be low functioning. I am a bit ashamed to say that, but unfortunately it's the truth. I was scared of what I may see. Because right now, Dylan is a baby and is just like any other baby. It is not easy for me to picture Dylan, say, as a 10 year old or 20 year old with Down syndrome. Well, we did indeed see children who were low functioning and nope, it wasn't easy. It is not easy to admit that this could be our son. We also saw children with Down syndrome who appeared to be high functioning. Hey, this could also be our child. See, we just don't know. And we won't know for a while. Only time will tell, I suppose. At least that's what I've been told.

While sitting on our couch tonight, I turned to Dave and asked him how he felt about today. He said he felt emotional. Emotional in what way, I asked. He said that he was just blown away by the fact that everyone there was just there...just there loving their kids. Loving their kids no matter what. High funtioning, low functioning. Walking, not walking. Talking, not talking. Their parents love them.

And I know for a fact that is how we will be with Dylan as well.

What I was afraid of, though, is ok, I think. It's ok to be afraid of what you do not know, especially when it involves the future of your child. But the future is always uncertain, isn't it? What I am finding comfort in, is that he is Dylan, and that is all I need to know right now. He is the baby who loves to be held and hugged. He is the baby that smiles and talks and looks you right in the eye as if to say, yes, don't worry, I know. I love you, too.

Saturday, October 11, 2008


Bright and early this morning, a nurse came to our house to give Dylan his first Synagis injection. Synagis is a medication to help protect babies who are high risk from severe RSV (Respiratory syncytial virus) infection. It is given in monthy shots during the cold and flu season. Each dose of Synagis gives the baby enough RSV specific antibodies to help fight off RSV infection for about a month. Get this - each injection costs about $1900, therefore I was pleasantly, ok more than pleasantly, surprised when we received a notice in the mail stating that because of his early arrival and heart condition, Dylan would be approved for 5 Synagis injections! Woohooo! Perfect timing, too, because both Cassidy and Dave are sick with colds right now. Please cross your fingers that Dylan stays healthy!

He was certainly not a big fan of the shot and fell fast asleep soon after it was given. Aww!

Friday, October 10, 2008

Red Sox

Look who's getting all pumped up for the big game tonight!

Thursday, October 9, 2008


You know...I don't think about the future very often. I really do try to stay in the present as much as I can. I am a big time worrier, so the unknown and I aren't exactly the best of friends. Recently, I've realized that I'm spending far too much time fretting about Dylan's heart surgery. In fact, I can't even escape it in my dreams at night.

Anyway...I'm already off the topic and I haven't even begun yet.

Ok, so a few days ago I received a package in the mail from The Children's Hospital in Boston. It contained lots of "stuff" about Down syndrome. There were books, a calendar, pamphlets and a DVD entitled: Celebrating Life With Down Syndrome from The Band of Angels Foundation. Yesterday, on a whim, I decided to watch the DVD.

I plopped down on the rug with Dylan in my lap. A few minutes later, Cassidy positioned herself on my lap as well. We watched the DVD together. It couldn't have been more than 15 minutes long. It contained interviews with various parents of kids with Down syndrome.

One of these interviews showed a mother of a 17 year old boy with Down syndrome. While she was talking, pictures and videos of this young man were flashed across the screen. His mom talked about the relationship that her son has with his sister and how it is all very typical. She then went on to explain how he was on the varsity swim team at his high school. This was of particular interest to me because I was a swimmer as well. I even went on to compete in college. Ooh! This is going to be GREAT, right?! Inspirational! Well...not so much. His mom then went on to explain how her son was the only student with a disability who has ever competed in a varsity sport at that high school. They then showed this young man at a swim meet. I started getting excited to see him compete. He climbs up to the starting blocks and...jumps into the pool! Jumps! That is a big no-no in competitive swimming. I mean, no one jumps off the blocks! It turns out that the coach had allowed him to be on the varsity team not necessarily because of his abilities as a swimmer, but rather because this boy was dedicated to swimming. He loved the sport.

It goes on to show him finishing the race and everyone was standing up and clapping for him. Snort. I know why they are clapping. Because they feel badly for him. It is the pity clap. Tears start falling down my cheeks and I try to wipe them away before my daughter notices. She turns around and says, "Ok Mommy? Ok Mommy?". I tell her that I am fine. But I don't really feel fine. I feel sad and scared and angry. I can not believe that my son is going to be the kid that people feel badly for. That people pity. That finishes a race dead last.

Later that night Dave and I watched the DVD together. As we were watching it, I looked over at him and saw that he was getting choked up. Tears started to well up in my eyes as well. But this time it was different. Everything was different. I realized that this time I was watching this program as a mom. As a mother. The first time I had watched it as an athlete. The first time I watched it, I felt badly that my son wasn't going to be the best. The second time I watched it, I could only focus on how proud this boy's parents were of him. And you know what? You could tell that he knew that!

Isn't that what is important in this life? I mean, what more can you ask for then to feel so incredibly proud of your children that you cry? I guess the only thing that is more important than that is that your children know, with out a question of a doubt, that you could not be any more proud of them if you tried.

Wednesday, October 8, 2008


About 9 hours after Dylan was born, he was transferred to The New England Medical Center NICU. After some terrible miscommunication and confusion, I was discharged shortly thereafter so Dave and I could drive down to Boston to see our newborn son. We had only seen him twice, our son. And very briefly. We saw him right after he was first born, and then again as he was being wheeled out the door towards the ambulance, with his traveling medical team alongside him.

Those NICU days were by far the most difficult days of my life.

We got there pretty late on that first night. Dave and I were so lost...literally and figuratively. We were incredibly overwhelmed to say the least. I remember thinking, "Wait a minute. Didn't I JUST give birth to a baby today? Why am I climbing stairs, walking through parking garages and trudging through long hallways looking for my son? Shouldn't I be lying down with him in a hospital bed or something?!"

The doctor who came to talk with us that night was hopeful. He told us that by no means should we assume that Dylan has Down syndrome. We told him that at the other hospital we had already been told that they were "98% sure that he did have Down syndrome". The doctor said that nothing was proven yet and we should wait until the FISH test results come back. This was on a Saturday and the test would not be done until Monday. While I appreciated that this doctor was trying to be nice and all, in our hearts, Dave and I already knew what the results would be.

The next morning Dave and I had a difficult time going into the NICU to see Dylan. Instead we walked straight into the parent's room and just hugged each other. We just stood there in a hug, crying. I remember feeling so incredibly sad...and terrified and heartbroken. I felt these things for myself, for our son and for our family.

As we stood there hugging each other, we overheard someone approach a younger couple and explain to them that the priest was on his way for the service of their lost baby. I realized then that we were lucky. There we were crying over our son. Our son who was lying in a room just down the hall. Yes, so he has Down syndrome. This couple lost their baby. We did not.

The days passed and we eventually received the results from the FISH test. We were not surprised when they told us that Dylan has Down syndrome. I feel like there was at least some warning about that. A 98% warning. We were, however, surprised to find out that he failed his hearing test and he also had an AV canal defect which would require open heart surgery at 4 months of age.

Dylan. He has certainly surprised us in many ways these past few months. But in all honesty, I would say that the biggest surprise, is how much we are already in love with him.

Tuesday, October 7, 2008

Occupational Therapy

Dylan had his weekly OT session today. Despite being pretty sleepy, he did really well! Some of the notes from his OT read: "Head control is improving. He is working on getting hand to mouth. Still working on head control on his belly. Keep doing belly time daily." Woops...see that last part? Yeah, that is what I was talking about yesterday in regards to whether or not I am doing enough for Dylan. Ugh, I'm a belly time slacker.
In any case, check out how hard Dylan worked today!

Look Ma, I'm sitting!
Hi Courtney!

Yikes, my head is heeeeavy!

Monday, October 6, 2008

Am I doing enough?

Once the house is finally quiet and semi picked up, and the babies are in bed sleeping, I sit on the couch with a glass of wine and frequently ask myself these questions in regards to Dylan: Am I doing enough? Did I do enough today? Am I taking advantage of every opportunity? Is there anything more that I can do or should be doing for Dylan?

I try very hard to find balance in my days. I struggle though. I'm trying to find a balance with time...time with Cassidy, time with Dylan, time with Dave, time with me, time dedicated to cleaning the house - pfft!, time for exercising, cooking - oh wait I don't cook, uhm...time for connecting with others, relaxing...blah blah blah you know how it goes.

So alot of the time, I worry that I'm not doing enough with Dylan. I try to make the most out of every minute that he's awake, but sometimes I just can' know, when the laundry pile is tipping over, the phone is ringing, insurance bills are piling up on the table and my 2 year old is begging me to color. Sometimes I just can't sit on the floor and work on trunk strength. Therefore, sometimes Dylan is left in his swing know, swing. Is that bad? I know that it's very important that I work on strengthening exercises with him, so I feel terribly guilty when I'm not using his awake time to it's fullest potential.

It's just that I do not want to ever regret not doing enough. I do not want to wonder if I could have done or should have done more to help him sit, crawl, walk or talk sooner or better or easier. I want to do everything in my power to help him. I want the best for my little guy.

But then I remember to breathe. This is not a competition or a race. I remember to slow down and enjoy the ride. That is what life is truly about, isn't it? I simply can not control much as I would like to, haha. Dylan is a baby. First and foremost I need to love him and enjoy him. Which I do. Trust me, I do.

How can you not love a face like this?

Sunday, October 5, 2008

Birthday Beauty

How did this sweet little two year old spend her birthday?

Well let's see...
Fed some goats:

Played with Play-Doh:

And ate some Dora the Explorer cake:

You can't beat that for a great day, now can you?!

Saturday, October 4, 2008

Birthday Bash

My baby girl is turning two tomorrow!! We celebrated her second birthday a day early and had everyone over this evening.
Check out her sweet new Dora the Explorer backpack!

Friday, October 3, 2008

I Did Not Know

"We think that Dylan is showing some possible signs of Down syndrome.".

Those were the first honest words that were spoken to me five hours after my son was born. I was so scared. No, actually I was absolutely terrified. I was terrified of so many things in that moment, one of them being a question about my love for him. I honestly believed that I did not know if I would be able to love him. To love this baby with Down syndrome. To love Dylan.

I remember being home that night, the night that he was born, alone with my husband. Dylan had been transferred to the NICU and I was discharged from the hospital where he was delivered. I remember peeking in Dylan's room that night and thinking that I had been horribly betrayed. Yes, this was Dylan's room. Yes, these were Dylan's clothes and Dylan's toys. But not the Dylan that was in the NICU. That was not the Dylan that I had envisioned or planned for. No no no. This wasn't how it was suppose to be.

I remember shortly after Dylan had left in an ambulance heading to the NICU in Boston, telling my dad and sister that I was angry with this baby. I was actually angry that he wasn't who he was suppose to be. I was crying so hard because I knew that it was so unfair of me to feel this way. I remember saying to my dad, "I know that it's not his fault. But I am just so mad at him!".

It has been 3 months since that day. I know that in some instances 3 months is not necessarily a long time. But in this case it is. It is the amount of time that Dylan has been in this world.
When I think back to that day, I wish so badly that I knew what I know now. I wish that I knew that of course I would love Dylan with all of my heart. I wish I knew that now, 3 months later, I cry a little bit every day because my love for him literally hurts.

I thought that I had been betrayed, but really this was all right. Everything that happened is exactly right. It has taken me a little bit of time to get here, but now I know without question, that my Dylan is exactly who he is suppose to be. He is Dylan.

Thursday, October 2, 2008

Best experience...of the morning!

My lovely sister, Kim, suggested that today I write about my very best experience with Dylan so far. And even though the little guy is only 3 months old, I'm finding that I can't do this. I have had farrrr too many wonderful moments with pick just one is impossible!!

So, to compromise, I've chosen the best moments from this morning.

Here is Dylan telling me a story:

And here are Dylan and Cassidy lying...err playing together on the floor:

Their feet...

Wednesday, October 1, 2008

Down Syndrome Awareness

As some of you may already know, October is Down syndrome awareness month. Hmm, you know...before Dylan came into my life, I certainly never knew this about October. What that means to me, is that we need to spread the word!! Get the information out there so that more people become aware, more comfortable, less scared, appreciative and educated about Down syndrome - not just the technical chromosome Trisomy 21 stuff, but the personal side of Down syndrome as well. You know, the real deal. I want people to see our beautiful kids and how truly wonderful their lives are...

You can read more about the "31 for 21" challenge at the link below, but I especially LOVE this part:

Why should I do it?
This is the one question I can be unambiguous about. I propose you do it in honor of Down Syndrome Awareness Month. One thing I can say certainly, is that writing--blogging specifically--has helped me in numerous ways as the mother of a child with Down syndrome. I value the people I have met, the friends I have made, and the information I have gathered on blogs. Wouldn't it be wonderful if new parents googled Down syndrome and our blogs came up? What a welcome wagon that would be!

I am going to try to post every day. We are also going to attend the Down syndrome Buddy Walk on October 12th. I am slowly but surely making my way into the Down syndrome community...the internet one and the real life kind. : )

Is there anything that you can think of to do to increase Down syndrome awareness?