control

I've had a number of things on my mind lately. No real answers to any of them, just open ended thoughts, really. 

Last week, another Rett girl passed away. I'm not sure if I ever met her. I may have as she attended the same clinic Leah did in California. But it hit close to home because I know many of our friends were personally acquainted with her and her mom.

She was only 11. She still had a lot of life to live. And the decline was quick. Too quick. 

A Rett friend of ours {a father who hosts this amazing event each year on behalf of his daughter for Katie's Clinic and Rett syndrome research} knew this sweet girl well. She was one of the first girls he met when his own daughter was diagnosed. I look to this father as an inspiration - a constant source of optimism, strength, love, humor and hope. So, when he wrote the following letter, I cried. 

Dear Friends, Retters, and acquaintances,

This is the toughest post I have ever made.

A few days ago the Rett community lost another angel. Many of you will say, “oh not again” or “sad, but what does it have to do with me” or “it will never be a part of our life”. True as these statements may be I am asking you to bear with me and continue to read on. You see Arianna was a very special child. She shared many things with Erika and me. She was one of the first girls we saw in the beginning, her eyes sung like Erika’s, but most of all she laughed and smiled like my girl. Just a short time ago she was so much like Erika that if they were not of a different ethnicity they could be relatives. Arianna and Erika recently spent a Children’s Hospital stay together. I had the wonderful privilege to hold her hand following a tough scoliosis surgery for Arianna. Erika and I visited daily. She had recently left the hospital and was given the go ahead to return to school.

Then 3 days ago she developed a fever and was gone. I spent last night in Erika’s bed last night crying the entire night. I know that it is not manly but with Erika at 60 degrees and the same surgery inevitable, the comparisons are too painful to deal with. I told my dear friend Paige last night that for the first time since we began this life I feel defeated. I know it will pass but it is a change in how I feel. Arianna’s mom gave all she had as a single mom and Children’s performed an amazing surgery. Yet still the damn Rett Monster won again. Seems to me that no matter how hard I try I will not win. So the tears fall again and again all day today. Yet there she was coming through the door in her chair to a bleary eyed father all smiles and giggles with the best wet kiss ever. All I could do was hold her and sob in front of the nurse.

It comes on a day when most of us marvel at the fact that someone will win over $650 million tonight. I am glad for their fortune and the happiness it might bring. Barring a miracle it will not be us with our 1 ticket. I would ask you in Arianna’s name and Erika’s future that each of you look to your community to start your web of influence. Autism is now 1 in every 88 births. You may have dodged the bullet with your children thankfully but can you believe that by the time you have grandchildren you will be so lucky? This epidemic needs to be stopped and the only way is you and us.

Sunday I will be at a mass for Arianna and will have flashes of my future. On Monday I will hug her mother sobbing with no words. I beg you for all those un-born that may be yours and those of us now and forever engaged, look to your community and find us hope. I beg you.

Hug your children tight.

Love you,
Britt and Erika

I cried because I realized that even the strongest of the strong in my tiny Rett circle have no control. We can hope and work and fundraise and pray. But ultimately, the lives of these girls - the life of Leah - is out of any of our hands. And I have to admit, it brought me down a bit this weekend. 

I feel as if I've grieved all over again in just a few short days for the loss of what could have been. For the loss of control over the life of my little Leah. 

At each turn, I was met with a smiley, happy, extremely content Leah. It really was a fantastic weekend. A few seizures, yes, but such contentment, quite a bit of hand and arm control, a completed potty chart {#4 - the longest and fastest yet!}, fantastic eating, stellar tooth brushing and just an overall great attitude. So I wondered, why, when Leah seemed to be so content was I feeling such turmoil, fear, angst and sadness. 

I kept thinking about our family losing a close friend - maybe one of the few girls that we first met when Leah was diagnosed. One of the girls who had such a great impact on us, providing us with strength and hope. 

I thought about how life goes on. That we learn and grow and continue to hope - only to lose the whole reason for that hope. 

I again feared what my life might be like without my sweet Leah. And I just felt defeated. 

I know this feeling will pass. I know this little girl's family and friends will pick up the broken pieces of this past week and continue to fight for and hope for and give love to those who are still in the battle. That, we can control. And I am grateful.