Love

My friend Dan from The Oz Squad poses an interesting question. He asks, for the sake of educating people about what Down syndrome is really like, "What is normal?".

Eh, darned if I know, but thinking about it did inspire me to write this...

~

When I found out that Dylan had Down syndrome, shortly after his birth, I questioned very seriously, love. I questioned my ability to love. To love him. Questioned my desire to love him. To love my son. This baby with Down syndrome.

Honestly, I was afraid of him. For him. For me. For us. I was afraid of what I thought I knew, for I thought I knew what Down syndrome was.

I thought that this baby, the one who was lying in the NICU, the one who would need heart surgery, the one who has Down syndrome - this baby was not the baby who I had planned for. This baby was not Dylan, the one who had grown inside of me. Surely this couldn't be right, could it? I did not plan for this life. I did not plan for Down syndrome. I had planned for a baby. A baby boy. A normal baby boy. Period.

For the first few months, I bit my tongue and held back millions of tears. I watched my son and I waited. I held on. I breathed in, I breathed out.

Time went on and I began to see Dylan. Yes, Down syndrome too, for sure, but I could see Dylan in there somewhere as well. My baby boy. He began to smile. He began to laugh. There was love. It is growing.

Time continued.

Three, four months in and my heart is softening. My fears begin to crack and crumble and my worries are slipping away. Dylan and I have bonded throughout his heart surgery. I'm falling in love.

He is learning to clap. He waves. His personality is absolutely, without a doubt, shining. I am smitten and I am left wondering, what am I missing here? I must be missing something. This is Down syndrome? Is it suppose to be like this? This life is...this is not bad. This life is good. Better than good - it's amazing! But...I thought it was all going to be terrible. I thought it was going to be scary. I thought only negative thoughts.

But why? Why this fear? Negativity is the belief, and it needs to change.

This child. My child. My baby, my son. Dylan. He is...how can I describe what he is in one word?

You may think one thing is for sure - that he is not is normal. Eh, you may be right, for he is not normal, I guess. Neither am I. Heck, my almost 3 year old may appear normal, but I assure you, she's not either. And neither are you. You may think you are, but you aren't - ha! Is anyone? Seriously?

Dylan. He is something much stronger, much better than that anyway. Something so much bigger.

He is love.

Pure, true, honest love.

My bathing beauty...

quite enjoyed himself at the pool today, I would say.

Ideas for the Toothless Wonder?

We are nearing 14 months and Dylan still does not have any teeth. Nottaone.

He is, and has been for a looong time now, eating mostly Stage 2 baby food, with the occasional puff here and there. He is doing a bit better now with crackers - he will attempt to self-feed before throwing them to the dogs below.

I have changed my mind (for the gazillionth time) about the sippy cup and have given the ol' Honey Bear another go. He is now able to sip from the straw appropriately, but still doesn't completely grasp the swallowing thing. Most of the liquid comes back out - but - it is coming, I know it.

My question is - where do I go from here? I'm not sure that he should still be on mostly baby food at this age, but with no teeth, do I have many other options? I would love to hear some ideas on this, as I'm feeling a bit...stuck.

Now...it's 8 in the morning and wouldn't you know I am off to try to tame a terrible two tantrum brought on by the mention of potty training, naturally. Good grief.

Picking and Choosing. Alternately titled, "A long jumbled mess of confusion".

Dylan and I just got home from 2 appointments - the first was a hearing test and the second was a follow-up with his GI doctor. After being at the hospital for 3 hours, I began to get thoroughly annoyed, err...I mean I began to think. I began to question the necessity of all of this stuff. All of these darn appointments. As we were driving home, I started to wonder how a person, more specifically, a mom, can know how to pick and choose which medical appointments and Early Intervention services are absolutely, positively necessary? I mean, we can't just go along with every single suggestion that is made, can we? Or do we? I'm not trying to be snarky. I honestly don't know. Yes, I try to go with my instincts, but that is certainly not fool proof. Heck, I have probably already made approximately 3 zillion wrong decisions since Dylan was born.

So yeah.

I have left every single hearing test that Dylan has ever had confused - beginning with his newborn screening. He has never officially passed a test, yet I have always been reassured that it may not mean anything. That, in fact, he may be able to hear just fine, but they don't know for sure. Today was no exception. Although this time, the results showed a possibility of mild hearing loss in both ears as opposed to only his right ear. This time, they administered the behavioral test as well - the one where sounds are administered through speakers and they watch to see if Dylan turns his head appropriately. Bahhh. Who knows if he was tired/not in the mood/too busy clapping and waving to care/or really couldn't hear the sounds? Well, now we have a follow-up appointment in 8 weeks to see if there is any change - good or bad. Keep in mind that this is probably our 6th hearing test this year. At the next eval, if his results are worse, we will have an initial appointment with an Ear, Nose and Throat doctor to begin the search for finding out more information about the exact hearing loss and to discuss the possibility of putting in tubes.

So there's that.

Then, Dylan's GI doctor talked with us a bit more about the swallow study results as well as the Endoscopy and Bronchoscopy that were recommended a while back. I still stand firm right now that we will hold off on the 'oscopies. But again, what do I know? So we were at the GI doctor for over an hour for nothing. I mean, literally, nothing. What is the point of that? Seriously?

That reminds me, I remember mentioning to Dylan's pedi a while back that I noticed he sometimes wakes at night and occasionally makes noises in his sleep (kind of like a snore, but not really) and she suggested that he have a sleep study done. Still haven't done it. Is this necessary?

And speech. We are most likely going to be adding that service soon in addition to OT, PT, EI Family Therapy and twice monthly appointments with our EI service coordinator. Music therapy is still on hold. Last week our service coordinator mentioned that she is starting to put a feeding team together and would I be interested in having them come out to evaluate Dylan? My immediate response? "Yes, definitely!".

Again with the picking and choosing. Are these all necessary? Well, no of course not. But which things are? I am trying to do everything possible in the best interest of my child, but how much is too much?

How do you pick and choose? How do you wade through all of the doctor appointment recommendations and Early Intervention service suggestions? What do our children need? I mean really really need? And what things are simply precautionary?

Sometimes I wish we could just "be". But then if we were just "being", you SO know that I would be feeling guilty for not doing something.

Whew. If you made it through this jumbled mess of confusion, I'm impressed. And I thank you for sticking it out.

i did it

Yes, Dylan did it, too! With the tee to prove it!

We received this awesome shirt from Jennifer at Three's A Charm. You can get one as well, with the proceeds being used in a very creative way. One that is certainly close to our hearts. Read all about it right here.


So, what did Dylan do?

He smiled, he rolled, he learned to nurse, he laughed.

He successfully underwent an eight hour long open heart surgery to correct 2 serious heart defects. He recovered like a champ.

He ate from a spoon, clapped, sat unassisted, waved.

He self-fed.

He grew, he learned, he thrived, he loved.

To name a few.

And what, exactly, is he doing now?

Why, he's learning how to pull himself up to stand.

Donchaknow.

Happy

Soooo...you know that saying about people with Down syndrome?

The one that goes, "Ohh! They are always SO happy!"?

That bothers me. I mean, it really does annoy me. I think it's because it is such a generalization. Yes, I'm sure it is suppose to be a compliment or something like that, but the whole categorizing thing just gets under my skin.

Well, that and the fact that they are individuals. With different emotions. Just like everyone else.

Ahem. That being said,

my son

is not

doing a darn thing

to help squelch this stereotype.

Ahhh Dylan.

A work in progress.

Yet another example of how Dylan is teaching us patience.

He has now started feeding himself puffs! And as you probably discovered from the video (yes, that is Dave in the background singing the "We did it" song from Dora, ahem...) we are quite proud of him!

Remember all of my nervous-nelly posts about Dylan and his struggles with feeding? Even very recently I posted about how I feared I might even be...ah...insane? Yes, well, as I should have known, this feeding piece would come. In time. In Dylan's time, I should have known that it would all come together. And it is coming together. As a matter of fact, he has also started learning the proper way to suck from his sippy cup! This is all a work in progress, but it is working! And it is progress!

I am so pleased. And so thankful for Dylan who continues being patient with us as we learn...as we learn how to sit back and enjoy the ride.

sleep

We finally made the leap with Cassidy from crib to big girl bed. And while it has only been 2 nights, I must say (while knocking on wood), we are off to a pretty smooth start. Not only have the nights been peaceful, but also, today the normally non-napping Cass took matters in to her own hands and put herself down for a little rest.

And in case you were wondering, no, those are not pacis. C'mon, now. Of course we would not still allow our almost 3 year old to sleep with pacifiers. Sheesh.

And continuing on, on the subject of sleep...

This afternoon, I snuck in to Dylan's room to check on him as he napped. Ah, wouldn't you know I found him looking ever so sweet?

Sleeping babies. Is there anything in this world more heart melting?

Hmmm

As I watched Dylan throw, I mean "drink from" his sippy cup this afternoon, and again as he threw, I mean "ate" a cracker after dinner...

it occurred to me

that

Einstein's definition of insanity

may



be

hitting

a little too close to home

these days.

I'm telling you, though. One of these times, people.

One of these times.