Ramblings About The Beginning...

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

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

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

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

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...

...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...

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!!

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...

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?

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

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!

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...

BLOGOVER!

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

Thanks so much, Bethany!

Today

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?