I feel Lucky

While at physical therapy with Cara on Friday, I saw a little boy, with the use of a walker, take his first steps. He must have been around 3 to 4. His mother had her hands over her mouth and her tears flowed silently. For a few moments, I sat Cara on my lap and together we watched the boy slowly move his walker forward. He made sounds that didn’t resemble words, his hands grasped the walker in an awkward way and his steps were slow. It was a beautiful sight. His face and voice filled the entire space with joy. I squeezed Cara and let myself fill with hope. On our way out, I couldn’t help but put my hand on the mother’s shoulder but a large lump in my throat prevented words and all I could manage was a smile. She patted my hand and nodded in understanding and appreciation. My tears broke through the moment I shut my car door. There is a powerful connection between parents of special needs children that transcends all differences and divisions. I don’t know this boy or this family, but I was so proud of him. She has never met me, but she knew what I wanted to say. I know that this mother and I see a beauty that many are oblivious of. We are some of the lucky ones.

The world is full of “retard” jokes, people laugh at those they feel are lesser than and many selfishly navigate the world with little to no awareness of people around them. When I witness this, initially I am angry, but at the end of the day I feel lucky to have had my eyes opened and heart softened. I feel lucky that I see beauty in a special needs/differently-abled child or adult. I feel lucky that I feel hope and pride when I see a special needs child take his first steps. I feel lucky that I see the awkwardness of those steps as more beautiful than the grace of a ballerina. More powerful than an Olympic sprinter.

A couple of weeks ago I took Natalie with me to Cara’s appointment with her neurologist. Sitting in front of us in the waiting room was an older girl with special needs. She wore a bib to catch her drool, her hands curled closed, she kept turning around gesturing at Cara and saying, “baby! baby! baby!” in that stereotypical voice we all made fun of (and some still do). When the girl left the waiting room to go to her appointment, Natalie looked up at me and said “mommy, that girl was really nice.” My eyes filled with tears of pride, I just hugged her and said “yes, she was a really nice girl.” I feel lucky that my eldest daughter saw this girl as just nice and nothing else.

Being a parent of a special needs child is very hard. It is a lifelong roller coaster of constant highs and lows. I have never felt so sad, happy, hurt, angry, hopeful and hopeless as I have in the past 2 years. Most nights I go to bed exhausted. I can’t remember who I was before I had Cara and my world is not the same place. But, I am lucky. I am lucky to be the mother of a special needs child. I am lucky because there is beauty in this world that only someone who loves a special needs child can see. We, as parents of special needs children, are lucky because our children have made this world a special place for us.

Why not?

On April 13, my family and friends will walk in Golden Gate Park for hope, for energy and for life. We are walking to raise funds for research for mitochondrial disease. Walking to raise awareness. Walking for more effective treatments. Walking for a cure.

It has been months since my last entry. I would like to wrap up 2012 and write our thoughts for 2013 and that entry will come soon. Right now, it is more important for me to reach out for support and donations for our upcoming walk. It has been hard for me to come up with what to write. I don’t like asking for anything and I like asking for money even less. When I start to think about it, I realize that I gain nothing from your donation. Nothing, yet, everything. I, personally, do not need a cure for mitochondrial disease. Yet, I feel like there is nothing in the world I need more. A cure means my daughter’s life. This is why I am asking without reservation and with pride. This is why I am asking you now, please donate. Why not?

Cara is doing wonderful on the ketogenic diet. Over the last 8 months she has not only regained skills she started to lose, but can babble, roll, sit with less support and is interested in exploring the world around her. For those that knew Cara before we started the diet, you know how amazing this is. There was a time where I wasn’t sure if I would ever be able to hold her on my hip and now she can sit in a toy car by herself. She still needs basic head and trunk support but she is gaining strength and control over her body very quickly. The diet has completely turned things around. As long as Cara has mito she will need to continue the diet for the rest of her life. The neurologist that is keeping tabs on her progress and maintenance while on the diet looked me in the face and with a clear voice said “This is not a cure.”

Cara, despite the neurological damage that has caused her current difficulties, is a healthy and happy 2-year-old girl. This diet is not a cure. There is still a chance that Cara will have a rapid decline in health. All it takes is one bad illness, a high fever, pneumonia, an infection or the diet is suddenly not enough. One bad illness that throws her out of ketosis, her acid level rises to levels that are difficult to control, her seizures are not manageable and her body is not able to create the energy it needs to continue. One bad illness or infection could easily mean I lose my daughter. There is no other treatment options. There is no cure.

The vast majority of children that show symptoms of mitochondrial disease at a young age to do not live past their teenage years. Many do not live to see their teenage years. The abnormal MRI that started us down this road was at 4 months. Cara is one of the lucky ones. We have the keto diet that has made a huge difference and hope and pray it continues to, but, it is not a cure.

We are happy to help Cara overcome all difficulties she will have in life due to the damage that has already been done because of this disease. We are happy to be her legs if she needs them, be her voice if she needs it, fight for her, help her live life to the fullest. We are happy to do everything we can but we can’t cure her. We can buy equipment, drive to therapy, meet with doctors, be vigilant to prevent her from getting sick. We can’t cure her.

I have a feeling that there would be more and higher donations if Cara were “sick”. That is too late. There needs to be more awareness and funding for more treatments and a cure before the fight for life. We need to enter the fight with more to fight with, or better, not ever get to that point.

I have read too many stories of those suffering from this disease that lived years, even decades, feeling full of energy and healthy only to suddenly find themselves in a wheelchair, tube fed and their bodies quickly shutting down all in a matter of months. I have read too many stories of children that seem healthy then after the flu, pneumonia or an infection take a trip to the hospital and never leave. Too many stories of too many lives lost.

This is not so much of a rare disease as it is an unknown disease. Every 30 minutes a child is born that will be diagnosed with mitochondrial disease before the age of 10. Half of those with mitochondrial disease are children who showed symptoms before the age of 5 and 80% of these children will not live to the age of 20.

The organs effected most by mitochondrial disease are the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. Mitochondria are responsible for 90% of the energy our body needs to sustain life. Mitochondrial dysfunction has been linked to autism, Alzheimer’s Dementia, Parkinson’s disease, Huntington Disease, Amyotrophic Lateral Sclerosis (ALS), deafness and blindness, diabetes, obesity, cardiovascular disease, stroke, multiple sclerosis, Sjogrens syndrome, lupus, rheumatoid arthritis and even cancer.

My daughter has a disease that is progressive, fatal, very limited in treatment options and without a cure. I don’t know what else to say to encourage you to donate. If you haven’t donated already please ask yourself: Why not? Any amount helps.

If you are in the San Francisco area, we would love for you to join our team and walk with us. If you are not in our area, you can join our team as a virtual walker and help us collect donations and spread awareness.

Please support the Carawatts as we walk for awareness. Walk for treatments. Walk for a cure. Walk for hope, energy and life.

http://www.energyforlifewalk.org/sanfrancisco/carawatts