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I used to think the song “Fix You” was written just for me about Mia because I thought it was my responsibility to repair the damaged life she had been given.

“Fix You”

When you try your best, but you don’t succeed
When you get what you want, but not what you need
When you feel so tired, but you can’t sleep
Stuck in reverse

About three months after Mia was born I realized my secret calling in life was to fight for her rights to have the best doctors, therapists, caregivers and nurses. I spent so much energy making phone calls, arguing with supervisors in positions that told me she wasn’t “needy” enough for their services, refusing to speak to anyone that was not an attending doctor when she was in the hospital, and suffering inside because I was failing at giving her the most exceptional care a medically fragile child deserves.

And the tears come streaming down your face
When you lose something you can’t replace
When you love someone, but it goes to waste
Could it be worse?

About six months after she was born I was exhausted, devastated, and depleted of hope. One day in the ER, I said to my mother, “So, this is my life.” I was standing over an infant who weighed about seven pounds, who suddenly stopped eating on her own, who suffered from decreasing kidney function, who didn’t seem to recognize me, and who started to show signs of seizures. I was failing miserably at fixing her ailments, illnesses, and disabilities.

Lights will guide you home
And ignite your bones
And I will try to fix you

Amelia spent her first birthday in the hospital with a virus. I brought in a cake with a Tinkerbelle candle. We were not allowed to light it, but we sang and Nathan pretended to blow it out.  And even though we were in CHOP with our family and our extended family of nurses, the memory of her first birthday is a happy one!

And high up above or down below
When you’re too in love to let it go
But if you never try you’ll never know
Just what you’re worth

About fourteen months after she was born, I glimpsed a sliver of success. She had the best caregivers while I was at work. Her nurses at the medical day care cared for her as much as I did and loved her as if she were their own. When admitted to the hospital, I knew what doctors to ask for, what questions to ask about her labs, and how to get her home in the fastest possible way without comprising her health. Amelia’s therapists became part of the family and taught us so much about her potential. Her little accomplishments of holding her head, rolling over, and pushing up on her arms, became milestones in her life and will be burned into my memory forever.

Lights will guide you home
And ignite your bones
And I will try to fix you

At seventeen months, the real seizures began. The first one she had to be intubated because it lasted over two hours and then flown in a helicopter to CHOP because we were on vacation. I held it together and didn’t panic. I flew with her in the helicopter, my first ride, and watched her monitors the whole way knowing she was going to be fine. I made a list of questions and voiced many concerns about possible medicines to treat the ongoing seizures. Preparing for battle, I armed myself with the latest research, talked with other parents and created a plan for the boys on what to do if Mia has a seizure. After the fifth seizure in four months, the adjustments in her medicine are now working beautifully and we have been seizure free for seven months.

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And on your face I…

I was wrong about fixing Amelia. She never needed to be mended, repaired, refurbished. Mia is content with her life. A happy child whose perfect day involves swinging in the Pooh swing, batting her favorite bug under her toy mat, and rolling around on the living room rug to bang her legs on the dog’s head. In her eyes, her life is perfect. And after two years of having her in my life, in my eyes her life is perfect.

Lights will guide you home
And ignite your bones
And I will try to fix you

She has fixed me…

And for those of you who are visual learners as I am, I have attached a video for your viewing pleasure! (But Kevin you may have to fix it again so they don’t have to leave the page!)