This is going to be personal (and probably long)… a little look into my heart when I first found out that Josh had Down Syndrome. To many of you, this may be a repeat of things I have talked about in the past, on facebook or someplace else… but you see, I have a new follower on my blog. And she’s special.
She’s special because she recently received a prenatal diagnosis of Down Syndrome. She’s more than special… she’s downright lucky (I’ve used that word a lot lately and I don’t even believe in that word… she’s over the moon blessed, let’s put it that way).
This is for her...
First, I know you’re overwhelmed. I know your heart goes from being head over heels in love with your baby girl to being scared stiff. I know your heart goes from feeling like this is okay, like you can do this… straight to approximately one million what if’s. And then you build on the what if’s…
And that’s okay.
No feeling that you are feeling is wrong or unacceptable or corny or bad or anything else negative that you can come up with. They are JUST feelings. You can’t help them so have them. Talk with God about them. He knows them, He knows you and He knows (and loves beyond all measure) that little girl growing inside you. He blessed her with Down Syndrome. I promise, it’s a blessing.
When I first held Josh, I knew. Well, let’s be honest… I was sorta under the influence of pure happiness at just having given birth to another baby so my mind wasn’t 100% clear… but I DID know something was not quite right. His eyes looked like he had Down Syndrome but I didn’t dare ask. I waited for someone ELSE to mention it. I didn’t want anyone to think I wouldn’t WANT him if he DID have Down Syndrome. I didn’t want anyone to think I was prejudice or somehow had anything against Down Syndrome. Yes, these thoughts did go racing thru my mind.
After he had been taken off to the nursery (he also had a heart defect that we didn’t know about) so they could ‘stabilize’ him, and still nobody was saying anything about the way he looked, I finally asked my husband about it. Then the nurse. The nurse asked me why I thought he had DS and just the fact that she answered my question with another question made it real.
I don’t think I grieved. Everyone says that everyone grieves. But, I don’t think I grieved. I loved him from the start. Not to say you don't love her if you grieve... again, no feeling or way of handling this is incorrect. Everyone needs to find their own path.
I jumped right into ‘caregiver’ mode and wanted to make him better. I researched and read and asked questions and did everything IN MY POWER to make it right. He wasn’t wrong… nothing about Josh was wrong… but trying to come up with a solution to his breathing issues, his o2 saturation level issues, his feeding issues, his heart defect issues… well, that’s all I could do. It gave me a purpose in an otherwise helpless situation.
You might be scared and confused and overwhelmed with all the information out there, but that baby just needs love (and lots and lots of snuggles). If we had never had a day of physical, occupational, developmental or speech therapy, I honestly think Josh would be the very same (great) kid he is today. That’s not to say don’t do therapy… not at all… that’s just to say that she will learn at her very own pace… and that’s okay. It’s better than okay. You’ll learn to celebrate her very own pace (and by celebrate I mean… be prepared because you’ll find yourself clapping and dancing and singing over the smallest achievements, you’ll act sillier than you have ever acted and you’ll learn… don’t sweat the small stuff).
Josh has changed me. God has used Down Syndrome in my life to make me a different person. More patient (okay people, stop laughing… I’m a work in progress and patience seems to come a little slower than other things have), more accepting, kinder, simpler and, most importantly, closer to God. I wouldn’t want to go a day without Him.
Josh makes us laugh and cry. He makes me giggle and want to bang my head against a wall. He’s incredibly stubborn (comes with the extra chromosome, I’m sorry to give you that news but it’s best to be prepared, lol) and incredibly smart (when he’s not being stubborn). He brings out the best in people. He doesn’t hold a grudge (when he’s not being stubborn) and he loves to make people laugh. He likes to get his own way and… yes… I may or may not allow that to happen a little too often.
He has captured hearts. Your daughter will capture hearts. She will be more popular than you can even imagine. She will light up rooms. She will cause people to stare (and yes, sometimes in a bad way but who cares about them?) because she’s cute, funny, entertaining and… stubborn (or persistent if you prefer to use that term). You can not be a ‘wall flower’ because her presence will demand attention. It’s just the way it is.
Are there going to be hard days? Of course there are. As with any human being… life is not easy. There are ups and downs and all arounds. That’s why God picked you to be her mom… He knows full well that you can handle it. You can guide her, help her, love her, pick her up when she falls. He hand-picked the perfect mommy just for her… that’s how much He loves her (and you!!).
Lots of people will tell you that… that God gives special kids to special parents (I’m sure you’ve heard it a time or 2 or 350 already)… well, I’m here to say that there is nothing special about me. I’m just a mom, a regular mom who loves her kids. But I DO know that God picked me for Josh. I have questioned His decision more than I want to admit, but that doesn’t change the fact that I know it’s true.
There are 2 bits of advice I’d like to give and then I’ll end this long winded post…
1. People say stupid things. That doesn’t mean the person is stupid, it just means that, most times, they don’t know what to say. After she’s born, even your doctors and nurses will say things like “she doesn’t look like she has Down Syndrome” or “it must not be an awful case of Down Syndrome because she doesn’t even look it” (like looking like she has Down Syndrome is bad, right?). Just be kind, answer kindly because you need them. You need all the support you can muster up and they don’t know any better. They aren’t educated and that’s okay… you weren’t either before this. Educate them… nicely.
2. Take one day at a time. The best nurse on the planet gave me that advice when Josh was born. She reminded me that there’s no use in worrying about the future because it’s not here yet. She reminded me that even if he does have crooked teeth and coke-bottle glasses (bearing my heart here as those WERE things I was worried about), that I’ll still love him. And I do… he HAS crooked teeth but he won’t WEAR his glasses… and I still love him. Don’t worry about therapy and school and friendships right now… there is plenty of time to worry about that stuff. Just enjoy the remainder of your pregnancy and then her… and give her kisses from me and all the other mommies who know and understand what a true blessing she is… all the other mommies who get experience Down Syndrome up close and personal. We ARE super-duper, incredibly blessed.
This picture is one of my all-time favorites.
A sweet friend of mine saw it and her words helped me thru a tough time...
"Yes, that road is curvy, bumpy and going uphill... but ohhhh... look at the view".
(you can't really tell from this little picture but the view was the ocean, and mountains, and sun... beyond those trees the view was amazingly awesome)