Best Advice I Received as a Special Needs Parent

When Sutton was unexpectedly born with achondroplasia, a lot of people had things to say. Pretty quickly we joined the Little People of America organization and that was a wealth of information for us. They have a national chapter and local chapters all over the United States that just get together and form a wonderful little community. Our first meeting with our local chapter was before Sutton was three months old, but I went because I felt like my heart needed it. It was overwhelming, to say the least. Everyone was so kind and very welcoming but it was a lot of information and reality to take in. The reality of seeing what Sutton’s future looked like was a lot to take in and it just broke my heart, to be completely honest with you.

I don’t think that is specific to dwarfism either.

I have mentioned before how when you receive a diagnosis for your child that you go through a grief period. And it’s really confusing because if it is not a fatal diagnosis, you feel guilty for feeling these things. It’s basically grieving for the loss of the life that you imagined for your child. It doesn’t mean that you love them any less. It doesn’t mean that you’re not immensely thankful for them. It just means that the life you envisioned for them may look a little different than you originally planned. Different isn’t a bad thing!

I received the best advice from a local lady who is a little person herself and has also raised a child with dwarfism. That advice is something that I think back on frequently. Want to know what she said? Love your child. Be there for your child. Raise your child just like you raise your other child(ren). They will come to thank you for it. You may have to be flexible and roll with it sometimes or change it up, but at the root of it don’t treat them any differently. Don’t use their differences as a crutch. Don’t expect less of them. I know it is hard and they will have their differences but they will blow you away with their life. You just wait and see, Mama.

Diagnosis of any form is intense. There are so many feelings and fear and worry. Walking through those feelings and figuring out the best things for your child isn’t always easy or pretty. But at the end of the day, it is worth every single second.

Danielle is married to Ryan and together they have four beautiful babies. They're raising Lexi, Abram, Sutton and Beckham on the bayou in Crown Point. She is a self-proclaimed hot mess, Jesus-loving, homeschooling, Netflix binging, crafting and party planning stay at home mom. Sutton was born with achondroplasia dwarfism so advocating and raising awareness is important to her. Most nights once the kids are asleep you will find her staying up way too late to enjoy the quiet that happens after four kids.


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