To the new mom of a child with Down Syndrome

I've been in your shoes, maybe not your exact shoes, but I've worn the same brand. I know how sometimes they can be super comfy and look great with certain outfits. You admire them in the mirror, everyone compliments you on how great they look and how lucky you are to have found them. Then there are times when you've been standing all day on your feet and long for the moment to take those shoes off. You may even ask yourself, why, why am I wearing these shoes today! You didn't expect to be standing on your feet all day! You're begging for someone to come rescue your feet from the pain and discomfort.

Yep, I've been there!

Look, I'm not one to sugar coat things especially when it comes to parenting. You're probably already experiencing a myriad of emotions, feeling like you're on the scariest roller coaster of life. Now, some people are going to tell you how wonderful it is having a child with Down Syndrome. They will tell you how much joy that they will bring into your life. Some people will tell you what a blessing it is to have a child with Down Syndrome. You will hear how much your child will influence and soften the hearts of everyone they meet.

It's all true!


Yep, there's always a but. And I'm going to be the one to tell you what a lot of people won't. Grief is a funny thing. I'm guessing at some level, you've probably already experienced a bit of that when you received your child's diagnosis. I always refer to those first few weeks as my grieving period before the acceptance came. But grief has a way of hiding, sometimes for years and then hitting you again when you least expect it. We grieve our child's diagnosis because we lost the life that we thought we were going to have. We all have expectations- sometimes realistic, sometimes not. But when our expectations are not met (which is often), it hurts. Maybe we get mad, maybe we are sad, maybe we are scared or all of the above. Sometimes our level of grief depends on how different our expectations were from our reality. These are normal feelings. It's part of our humanism. We are flawed. We don't just grieve once and then all of a sudden we are over it. I know, sometimes it seems that way. We think we should be over it so we keep our grief hidden. Or we think that we will be judged for how we feel, so we try not to feel at all.

Our old expectations will continue to show up in our life and we will be reminded of that loss when our children still don't meet them. That's our fault though, not theirs.

I hate to be the one to break it to you, but the truth is, raising a child with Down Syndrome will not be all unicorns, angel wings, rainbows and smiles. It's hard! It's challenging. It's heartbreaking. It's frustrating. It's lonely. I want you to know this, not to scare you. But I know you will have these feelings of anger, sadness, grief, frustration- I want you to know that you're not alone. I want you to know that's okay and it does not make you a bad parent.

I can promise you that raising this child will absolutely bring you joy. But it will also bring you pain. The good news is you get to choose how you deal with all of those emotions that you will experience. You can choose to live in the joy even in the dark times. You can choose to learn from the pain. Without pain there is no growth. When you feel buried, consider yourself a seed that has just been replanted and ready to grow.

Congratulations and welcome to the The Lucky Few!

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