Not sure if I should still be calling him Baby Jack… he will be 16 months old this month! On Instagram I usually refer to him as #MyBigMan or #MyMainSqueeze. I used to refer to him as #MyLittleMan but he’s not so little anymore.
If you follow me on Instagram, you probably already know that My Jack has Down Syndrome and you probably already know that he’s the cutest little guy EVER! But just in case you don’t follow me, let me introduce you to My Baby Jack…
Baby Jack was born in June of 2012, perfect as can be… and sporting an extra chromosome.
15 Weeks Pregnant: Down Syndrome Diagnosis, CDH and Ventriculomegaly
When I was 15 weeks pregnant we found out that not only were we having a baby boy, but he would be born with Down Syndrome. We also found out around that same time, that he had numerous congenital heart defects like PFO, PDA, ASD, VSD and IAA and also had Ventriculomegaly, which is fluid in the brain. The pregnancy was full of worry, mostly due to the heart and brain defects and the upcoming surgeries, but we didn’t worry as much about Jack’s Down Syndrome although we still had questions and concerns. The day after we received the Down Syndrome news… we had a 3D ultrasound:
I always look back to this picture. It looks like my womb is hugging and holding him. Now looking back, that was always the answer. He was my baby and I loved him. Nothing else in the world mattered. Although back then when it was all so new, we had lots of questions.
The worrying we had about Jack’s Down Syndrome was unknown questions. Questions like…
- Was our baby going to look like me or would he look like Daddy or his sister Gracie – or would he look like a baby with Down Syndrome?
- Would he be higher functioning, mentally? Or lower functioning?
- How will our lives, as we know it, change?
We knew life was going to be different once we had him. We knew our life was going to slow down and things would not be the same. Having a child with special needs does change things, that’s a fact… but what would life be like?
If anyone wants to read about our very first emotions once we learned about this news, I wrote a post called, We Had Tickets to Disney, But We’ve Been Re-Routed to Holland. There is a famous poem called, “Welcome to Holland” that I shared in that post. It’s a MUST READ for anyone who is having or has a child with Down Syndrome… or any other special needs for that matter. It describes a person who is getting ready to go to Italy, boards a plane, and then unexpected lands in Holland. A completely different place. Little did that person know, Holland was a beautiful place just like Italy – just different. Slower paced, but still wonderful. Just like having a child with Down Syndrome. Things will still be wonderful, just different.
I Want a ‘Do-Over’!
What I’ve learned though, is that life will be better than just beautiful and wonderful. It will be perfect. And it was perfect. It was perfect because God gave us the most precious gift I could ever ask for. He gave us our Baby Jack and there isn’t anything in the world I would change! When Jack was about a month old, I wrote Down Syndrome: Can I Have a ‘Do-Over’? I wish I could go back and be pregnant with Jack all over again and really, really enjoy it with no worries or questions. I wish I could have seen ahead of time, to see how great things would be.
So Jack is almost 16 months now.
He’s the cutest little guy and has such an awesome personality. Mike will talk to Jack and say, “Jack… do you want a little baby sister or brother JUST like YOU?” haha. If we could have 10 more kids JUST LIKE JACK – we would in a heartbeat. He’s the best! When I am rocking Jack to sleep during nap time or bed time… I talk to him and say, “Jack, Jesus must have known how much I was going to love kissing you when He decided to give you to us!” I thank God for this baby every single day of my life, and I’ll never stop.
Physically, Jack is developing in the 8 month old range. He has been getting around the house by rolling, sitting up and pivoting, rolling some more… and schooching on his butt. Just this week he started army-crawling. YAY! He can get into sitting position by himself. Now we are working on pulling up and standing next to toys. We gets physical therapy and 3 other kinds of therapy through out the month to work on different things and also gets adjustments by our holistic doctor too. He loves dancing anytime he hears music and he waves (and says) bye (ba ba) and waves ‘hi’. He can not drink out of a sippy cup or bottle yet, he just can’t get the hang of it yet. He only has 2 bottom teeth and he’s teething like a mad-man! He’s had 2 haircuts and is in need of another.
Socially and Mentally
Socially and mentally Jack is right on track. He’s understanding everything we say and it’s hilarious! He’s SUCH a character – JUST LIKE DADDY! He goofs around just to get a laugh out of us… and it works. He understands “NO” and he hates it and throws a little fit. He’ll hit his hands on his lap and grunt. He knows the word eat and just started signing it. We play “I’m gonna get you” and tickle him and he squeels and belly laughs. Cracks us up! He is the biggest flirt in the whole world… well, next to Daddy anyway. When we’re out in public, he’ll make this fake laughing sound until a lady sees him and then, of course, he gets her to talk to him. He says hi and bye at the right times – it’s adorable! Gracie’s bus driver loves it. He gives ‘smooches’ – which is the cutest, sweetest thing ever!! I wouldn’t trade his kisses for anything! Jack also makes silly faces. We can make a face at him and he tries to mimic us – it’s hilarious. There is one we call the “monkey face”…
Jack is exclusively breastfed. We started working on baby food 2 months ago. He doesn’t always like food. Some days he will eat half of a jar of baby food, some days none at all. That’s another thing we are working on. The therapists do not want us trying anything more than baby food at the moment, until he can crawl. I guess his tummy muscles might not be developed enough just yet… until they get stronger from crawling. Then we will work on some table food.
Jack sleeps with us and loves to snuggle. I started putting him down for naps in his crib, to get him used to it. He’s been napping in his crib for about 2 months now and he’s doing great! I can’t wait until we are able to transition him at night time. He’s not ready yet though and still wakes up a billion times a night to nurse. I’m patient. Kinda.
Support Down Syndrome Awareness With Me!
If you’re still here, thanks for reading. I just figured, since it is October and Down Syndrome Awareness Month, I would really love to share My Baby Jack to show what a blessing from God it is to have a child with Down Syndrome. Especially considering the abortion rate is so high for babies who are diagnosed with Down Syndrome while mom is still pregnant.
Look at what you might be missing…
Please support Down Syndrome Awareness Month along with me!
If you are having (or has) a baby with Down Syndrome, congratulations!
If you have any questions or would like to talk, please feel free to send me a message at Danielle@wedonthaveitall.com.