If you had to choose to give birth to child with a limb difference would you?
But every challenge our kids face are just that, a challenge. And even though I wouldn’t have asked for Jordan to have one hand and one elbow, I’m so happy to be Jordan’s mom and have her in my life. Jordan wouldn’t be Jordan any other way. As I’ve told her, she was born exactly the way I wanted: Healthy. The number of hands and feet that come with a child really doesn’t matter in the end.
Recently, friends of ours brought a darling little baby into the world. They didn’t know he was born just right until his mom noticed his shorter left arm right after his birth. They almost immediately reached out to me. And I’ll be honest. I’m SO HAPPY for them. When I told Jordan, her reaction was, “I like more people being born just right!”
This is the first time when I have known parents personally *before* they brought a born just right baby into this world. They didn’t know about his limb difference until he arrived. (Just like our experience with Jordan’s birth.) No one noticed the baby’s limb difference until his Mom noticed. (That’s what happened to me!) But the big differences is when the doctor robotically declared the baby’s limb difference as Amniotic Band Syndrome (which is when stringy pieces of the amniotic sac break apart and wrap around limbs) and I was able to offer an alternate diagnosis of symbrachydactyly. It’s all kinds of new information that can leave your head spinning a bit at first.
So I just want to offer them a few pieces of advice as they join the limb difference world.
Congrats on your sweet new arrival. It’s okay to be sad. We all have this vision that the “perfect” baby must have ten fingers and ten toes. I have wonderful news. Ten fingers aren’t that big of a deal. Yes, you’ll probably stare at babies with two hands for a while. I know I did. But please, know that you are not alone. I am so proud to be a resource for you.
It’s okay to ask a TON of questions. When Jordan was born, I had a small group of parents I found who were incredible listeners. (It’s an online group called Sammy’s Friends.) Please feel free to ask me all kinds of questions. Feel free to ask questions to other parents as well. I know a whole bunch.
It’s totally worth reaching out and finding occupational and physical therapists now. It is never too early to find resources who can help make sure your little guy is strong and able to remain strong and healthy throughout his whole life.
It’s really important to take time and just absorb and enjoy this tiny baby zone. It’s precious. It’s quick. It’s exhausting. No matter how many exercises or appointments or whatever falls into your lap from doctors and therapists, sometimes taking a nap is more important. Actually, always try to take a nap. Seriously. I still feel like I’m catching up on sleep with an 8 and 11-year-old.
A while back I wrote the five things I wish someone had told me when Jordan was born. I still stick by those. Also, I’m so glad I can be a resource for you. Your sweet baby is going to grow to be awesome and I can’t wait to get to know him.
Jen (along with Jordan, Cam and Randy)