Thank you all so much for your thoughts and prayers for our Trisomy friends Maddie and Allison.

Maddie passed away on May 3rd, surrounded by her family. She had just recently celebrated her fourth birthday. When we first found out about Ivy’s diagnosis of Hepatoblastoma, Maddie’s mother Melissa was one of the first to reach out to me. Maddie had the same thing, and was getting ready to undergo surgery to have her tumors removed. This of course immediately endeared Maddie to me all the more. We parents of Trisomy kiddos are already bonded over rare diagnoses and the general ways our lives are affected, but there are a few we inevitably become closer to- the ones who are around the same age as our littles, and the ones with similar health issues. Melissa has always been around when I had questions or wanted to share news, as I was around to hear her news about Maddie. Maddie was an amazingly strong little girl, with a beautiful smile. Like Ivy, she beat her cancer and moved on. Just another day in the life! 

Allie passed away yesterday, May 10th, also surrounded by her loving family. She was 3 days away from celebrating her first birthday. I am still in shock. Allie had such a feisty, sassy spirit, and was so intensely loved. 

Both of these girls hold a special place in my heart, and I simply can’t believe they are gone. While my feelings surely do not come close to touching on those of their families, it is true that we all grieve together, we all mourn the loss of these two precious lives. My heart has been broken many times over by losses in our community, but these two hit me even closer to home. Maybe it’s the fact that Ivy was recently hospitalized. Maybe it’s that’s he has had some sniffles off and on for a week or so. Whatever the reason, the fact is brought home to me that our kiddos time on earth is limited, and we never know when it will be the last time we get to hold or kiss them, or sing to them. It is a grim reminder that though no parent should outlive a child, some do, and I will. I will be here, trying to figure out my life after she is gone. And this might be better than the alternative. What happens if I die before she does? No one- NO ONE- will ever know Ivy like I know Ivy. Who would be her everything if I die before her? These thoughts are present to some degree every time a life is ended, but this time it has been especially hard. I am grieving for Maddie and Allie, I am grieving for their families, and I am grieving for my own future. And all any of us can do is hope that that future is far away.

To Maddie and Allison-I hope you are flying high amongst the stars, my sweet girls. We will all miss you, always.