Let Me Tell You EVEN MORE About Parker

NAV: BIRTH LETTER  | 6 MONTH UPDATE  | 9 MONTH UPDATE  | 1st B-DAY  | 500 DAYS UPDATE

500 Days of Parker

Dear Friends,

Saturday marks Parker’s 500th day on this Earth and as a living, breathing part of our lives. I figured that called for an update for those of you who’ve enjoyed and followed our blog and the other stories I’ve posted about him. It’s been several months since the last update, so it was probably time.

I struggle with where to begin because I want to tell everyone everything. I want to share every moment of every single day where he amazes me, makes me proud, inspires me, challenges me, makes me laugh and makes me cry. Every moment is noteworthy and a memory I hope will last forever.

If you’ve read past postings, you know about how he got here and where he’s come over his first year. He has done so much to make our lives better, our relationships stronger and just be sunshine on any dark day. I figure most of you know us at least enough to know that just 6 days after the last post (PJ’s Birthday), we brought a baby sister, Isla, into his world. That was a pretty magical moment for us and was a testament to the strengths Parker has reinforced in us.

It’s not uncommon for people who have kids like Parker (or other kids who’ll present unknown levels of need for their lifetime) to be done having kids because they feel compelled to focus solely on that child or are otherwise fearful, for one reason or another, of what may come with another child. We saw it very differently. Parker needed more than just his big sister. While we certainly hadn’t expected to have another child so fast, we always wanted more. Them being Irish twins has proven, already, to be a benefit to his growth and hers. There was always a possibility that she’d have Down syndrome, too…that chance exists with any kid. It’s heightened when you’ve had a baby with it, but it’s still very unlikely. I can tell you right now with 200% certainty that if she’d been diagnosed with it, I would have been as ecstatic about her as I am right now. Parker proves to me every single day that it simply doesn’t change what that child means to you or what they’ll be able to achieve.

The last several months have been truly outstanding. He’s grown up so much and accomplished a lot through hard work. His low muscle tone, a big factor in the physical disabilities related to Down syndrome, was extra obvious over the past several months as most kids his age were getting upright and walking, he was working really hard to maintain his balance in basic sitting positions. Crawling was going to be his big hurdle and after working his butt off to get strong and hold his balance, he propped up in the crawling position one day a few weeks ago and he did it…and he hasn’t been still ever since. His therapist said that in her 25 years, she’s never seen a kid go directly from sitting to 4-point crawling without some intermediate scooting, trudging, etc. That’s all a testament to his determination. I always knew he knew what to do, he just wasn’t (physically) strong enough to do it and then one day he ways…the rest is history. Inspiring.

Milestones have taken on a whole new level of importance. I know we’re certainly paying more attention and appreciating them. We aren’t rushing him nor are we in any big hurry to get him into additional therapies or support programs. He’s doing really well and we’re just enjoying him and his growth, day to day – the kid’s a blast!

Anyone who has had the chance to be around Parker can attest to how much fun he is. He’s cheerful, has the best smile and the cutest laugh. He loves to just be around people and soak up whatever is going on and he loves to shake his little butt to the good music we like to blare in the house! He is, of course, in love with his big sister, Lydia. As previously mentioned, he is always facing in her direction and, as of late, following her around. And, as of even later, he says her name…repeatedly….loudly….gloriously all the time. It’s so cute.

Lydia, for the record—not that easy a word to say for any kid. In just the last couple of weeks, his vocabulary has grown remarkably, almost as if he’d found relief in getting past the crawling hurdle and moved on to the next thing. He has been able to say Mama and Dada for a long time now (somewhere on my facebook and instagram is a video from the winter), as well as a few other things, but lately he’s been extra communicative and learning lots of useful words. Many experts suggest that you work hard on sign language with kids with DS because speech is challenging and tends to be slower to develop. While we’ve certainly introduced some basic sign language, like we did with Lydia, we haven’t really pushed it because with all the chaos in our house and talking and singing, I believe he’s going to adapt and that seems to be the case. He’s saying things like “more”, “all done”, “bath”, “grampa”, “row-row (your boat)”, “bye bye” (complete with emphatic waving), and some other adorable and pretty useful words that have really empowered him. On the sign language side, he can tell us when he’s hungry and tired and needs a drink and wants more and all-done, etc. He’s a really bright kid and I’m so impressed with him because much of what we’ve been told to prepare for (delays, etc) have not been the case thus far. He’s brilliant!

Kind of ironically, in May we went to the nearby town of St. Joe, where we often can spend an afternoon lollygagging. We went to the coffee shop for lunch, played at the park and ended up at our favorite meat market to pick up meat and grab a brat at the brat stand. While at the picnic table there enjoying a brat, a truck pulled up and a little girl with Down syndrome hopped out and b-lined right for Parker in his stroller. She had no idea he has DS, she could only see the stroller from where she was approaching, but marched right up, ducked under the sunshade of the stroller and started ogling him. She was 7-8 years old, a cutie and really funny. She was with her grandparents, who sat down next to us at the picnic table. They are raising her and told us all about her while she chatted with Liddy and smiled at Parker. After them talking for awhile, we pointed out that Parker had DS, too, to which they didn’t even really react…it was no big thing to them. All they really did was jokingly tell us to teach him to talk. They said that when they decided to raise their granddaughter, the doctors and therapists told them to learn sign language because they’d need it. In the awesomest and most genuine of old-school ways, the grandpa guy leaned in and said “I told ‘em that we’re too old and we ain’t gonna do that. She’s just gonna have to talk “. The grandma reinforced it and said they just started talking to her all the time and she started talking back and has never stopped. I remember loving their spirit and wanting to be like them in so many ways…we’ve certainly followed on the talking thing. We’ve met some awesome people we share this experience with.

On that note, the best byproduct of our sharing Parker’s story with the world has been the new relationships we’ve made and new folks we’ve met. It’s funny to look at how different my Facebook wall is today than it was just over a year ago. Of the many new faces, we’ve been very fortunate to connect with several other parents of DS kids. We’ve also been blessed to meet some expectant parents of DS kids and were able to, in some small way, help prepare them for the awesomness ahead. One of the couples had their baby girl on Parker’s birthday! Higher powers at work there. And, in the craziest of crazy coincidences, the father of that baby girl had a sister who was pregnant and her and her husband reached out to us in the winter because they, too, were expecting a baby with DS. In very rare occurrences, there are hereditary causes of Down syndrome, but this wasn’t one of them. This was just a crazy, almost statistically-mind-blowing occurrence. They had their baby girl a couple months ago. That will be such a blast to have two cousins the same age taking over the world!

I’ve obviously grown a special place in my heart for anyone with Down syndrome. I know them all so differently than I did before. For most of my life, I had a predisposed idea of who they are and what they can be. I love that I was so completely wrong in my perceptions and understandings and Parker has given me the chance to live the rest of my life with a completely different perspective on them and everyone.

Despite your personal stance on things like the recent marriage equality ruling, that type of action shows a zeitgeist shift in the country, one I believe to be about inclusion and respect for differences – even celebration of differences. Take your personal ideologies out of the picture for a moment and just consider what it means to give people a chance and include them in the same as we include the rest of us. I happen to think that is the world we should be living in and certainly one I want for Parker. I choose not to let the context change my opinion on the matter because I don’t want to have people telling him (or me) that he can’t do something just because he has an extra chromosome, so I don’t know if I’m in a place to tell someone they can’t do something because they are who they are. There is way too much negativity, hatred, violence and sadness in our society as it is. I’d rather we embrace life and humanity and support those who want to live positive, productive and happy lives. Any move toward that type of society is good by me.

I have such a joyful life. I have the best wife on the planet and 3 amazing children – all unique and all perfect the way they are. I know parents aren’t allowed, but I joke that Parker is my favorite. His positive impact on my life is so profound and he is just so absolutely magical to me. I love him so much more than I knew I could love anything. They’re all my favorite, but he’s had the greatest impact. I can’t deny that.

The other night epitomizes his impact on my life. We put him down to sleep and he was a little restless. After 10-15 minutes of trying to get himself to sleep, I went up and rocked him for awhile. He’s a wiggler at first, but eventually settles in. With his pacifier clenched tightly in his mouth, he grabbed both of my hands and was hanging on tight as he started to settle in and start falling asleep. Several minutes passed as he continued to mellow out and move closer to slumber. Suddenly, he let go of both of my hands. He seemed like he was snoozing, so I thought it was just that he had fallen asleep and couldn’t hold on anymore. Instead, he reached with his right hand and pulled out his pacifier and started talking loudly. “Dada…Dada….Dada”, he said. I had been dozing, so I wasn’t quite catching on. Then, with his left hand he reached right up near my face and started waving furiously. He had my attention, so then I looked down into his eyes and he was looking square into mine and he said “bye-bye….bye-bye….bye-bye”. He was saying good night to me. I immediately turned into a puddle of mush. I whispered back to him, “Good night, buddy. I love you.” and within moments, he was fast asleep in my arms. It took a lot to not start bawling all over him.

He was being sweeter than you could ever imagine a 16 month old kid could be. That’s what he does. He surprises you when you least expect it with a combination of intelligence and heart. I’m too lucky to have this kid. I just wander around sometimes in my mind asking how I got him. The best way I can describe Parker to people is that he is the best thing I never knew I needed. He completes me and he completes our family. I am just so thankful that he’s here with us and we can share him with you.

All our love and thank you all for readin ;-)

-Cory

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- Cory & Michelle & Liddy & Parker & Isla

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