Quinn got her new braces last week. Her feet are barely a size 5 but her shoe size is a 7 because of the braces and she looks large footed for a 3 year old, and she walks a little bit like a duck. Picture a very tall, large 1 year old learning to walk and you have Quinn. She’s still getting used to the braces – so right now quick turns are dangerous.

Since Quinn was born and we’ve been thrown into the medical vortex that is our life, we’ve had to change in our heads what we thought our life would be like. We’ve had to merge our old dreams with our new hopes. And part of that transformation is accepting what our kid’s limitations are. We used to have the regular dreams that people have for their children…you know, to love God, be smart, successful, and nice – and for it all to come easily. In the new hope mind, we want good kidney function for as long as possible, we want the kid’s doctors to be partners, gentle and compassionate, we want the kids to get great special ed services, and help for their bodies with therapy, we want them to have enough confidence in themselves to be socially comfortable, to handle the medical challenges they face with grace and hope, and to be happy human beings that are nice to others.

The shifting of dreams was slow at first. At just a year old Gage was diagnosed with OMA and it was thought at the time that coordination might be a problem. Okay, not great at sports. Hard at first I suppose for Julian, but not tragic. Then, as he turned 1 ½ we learned OMA really affected all areas of development and he had become delayed. Okay, not great, but we dealt with it – jumped Gage into 5-7 appointments per week for therapy and so it began…the evaluations, the reports, the Medicaid, the appointments, and the scheduling.

It was sad really, coming to the realization that our child was “developmentally delayed.” I remember someone I met in passing (can’t even remember her name) saw Gage doing the belly crawl (he wasn’t yet pulling up to stand) and joyfully asked how old he was. “18 months” I replied with a smile. She was speechless. And horrified. I could tell she was shocked about his development. I cried that night for my son and his delays. That experience has always stayed with me as the first time my IDM (Inner Defensive Mom) felt protective for my child, and also sad about his challenges. I think that experience in part forces me to be so open about what the kids are going through. I don’t want people to be horrified or speechless…I want them to know about OMA and PKD and how it affects Gage and Quinn and our lives. I want understanding and compassion.

As sad as it was to accept in the beginning…a transformation happened while sitting and watching Gage through the one-way mirror at therapy. All of a sudden I was looking in from the outside. The sadness about his delays left me as I watched him be playful, lovely, and joyful. And I was a proud mamma as I watched as the therapists fell in love with him. After a short while it didn’t matter that he was behind. Because helping him reach developmental goals were positive and wonderful and I was thankful to be a part of it. As I watched him meet milestones on his schedule I was proud of him and not sad anymore.

Then Quinn came and an entirely different situation was in front of us: the mortality of our children. It brought us to all kinds of spiritual places. It put all of Gage’s delays in perspective: at least our children were with us. We were blessed and thankful.

Yes, our dreams have shifted. Somewhere along the way, we’ve merged our old dreams with our new hopes and our life has meaning in a way that is different than we expected, surrounded by love and caring in a way that surprised us.

So thank you for helping us find our way.

Love,
Julia