An averaged-sized mom and her daughter with Kniest learn, scream, pray, grieve, and grow together.
By Delia, parent of an 8-year old girl with Kniest.
My daughter asked me about her height at age 3 1/2 years old. It was cool that we were in our hotel room at our first National Dwarfism Conference, in LA. I told her the truth, that she would not be as tall as her cousin (her best friend, 19 months older than her).
Since this time, Eleanor has had quite a few times of screaming at the top of her lungs, “It’s not fair!” “No, it’s not.” I reply. And we enter into sometimes a nighttime of rants and raves, of anger, of screaming. She’s very much a strong willed child. But we also have a fantastic opportunity to talk. To hug. To pray.
When her screaming is over, and we’ve talked and prayed, she comes out of it a stronger person. We are ALL different. She is truly a very SPECIAL person. She realizes how many fantastic things she CAN do, how much people LOVE her, and what a great addition to this planet she IS!!!! We all need to feel and know that, I think.
Anyway, YES IT IS DIFFICULT!!! And yes, after I have this fantastic talk with her, and she’s safely tucked into bed, I have a huge discussion with God. And sometimes I cry out “It’s not fair!”
But I believe life here on earth is not fair. Just ask any of those people who were in the Twin Towers, on 9-11-01. Or my nephews who lost their mom at age 10. Or, ….. you can fill in the blank.
I am very glad, now that my beautiful daughter is almost 8, that I have been honest with her from the beginning. Honesty has a great foundation to build from. And through all of her surgeries and procedures (like her body cast this summer for 44 days), she knows that I will tell her the truth. And when I say “I do not know”, I truly do not know. But that we will learn together.
Where to go for more information
- Page about caring for a child in a halo cast.
- New diagnosis page.
- Pain management page.
- Talk to other families with a similar diagnosis page.