It's a Great Life...

Some of you may have seen a story about a newly diagnosed baby girl with SMA and her Bucket List. This story hit national news this week. What many don't know about is the debates this has created within our SMA community. It is great that a family wants to have a fun way to create memories with their little one, as none of us really know how much time we have with each other. However, some comments were made on the blog that offended many of the parents and children living with SMA. Things such as they didn't want to spend their time at doctor appointments, they wanted to enjoy every moment they had, and that kids who use machines didn't have a good quality of life. When someone questions the quality of life of our children, SMA parents will not let that go without a response. I have quietly read through the endless debates that at times have gotten really heated. There are many opinions and good points made, but what always strikes me is how this all begins.
You all know, when we were told about Ella's diagnosis, we heard, "She may not live until her second birthday. There is nothing that you can do." It is like this sick script that all doctors use. I heard talk about needing to decide our position on having to trach Ella (breathing tube in her neck). I was looking at my daughter, smiling and sitting up and I just wanted to shout, BULLSHIT! I questioned them, asked specific questions and they looked at me like I was crazy, like I was a Mom who just couldn't accept the truth of the diagnosis. The truth is, the doctors I saw (minus my wonderful pediatrician) and the doctors most families see DONT' KNOW A DAMN THING! I feel like their blatent lack of knowledge and lack of wanting to learn have created this false perception of SMA. Rather than seeking an experienced SMA doctor's guidance, these doctors give parents no hope and send them on their way, "Go home and love them." It is ignorance and malpractice in my opinion. Some parents never learn more and they lose their children due to the misguidance they receive.
I wasn't going to take their word for it. There was no way in hell I was going to sit by and let someone tell me there was NOTHING I could do for my daughter. And so, I stumbled upon my first sign of hope...a beautiful little type 1 girl who was 4 yrs old, Kaitlyn. I will never forget the night I saw her. I cried so hard because my heart filled up with hope. I spoke with Kaitlyn's mom, who told me about another SMA family, who told me about another, and another. Soon I found this secret world of amazing families living with SMA. I thank God all of the time that I found these people. I learned the equipment I needed, how to care for Ella, toys she could use, questions to ask, meds to use. To these veterans it was second nature and it worked. Interventions in respiratory care and nutrition were saving these children. I began to see older kids, teenagers and adults with SMA! Why hadn't any doctors known about these people? Ignorance. Although only in this world for just over a year, I too have the responsibility now to help others like I was helped. I cannot stand silent while more families are given the information of no hope. It seems like every day a new member joins our online group and were given the same outdated info, and it sickens me.
But, because of the differences of information, some then begin to question the quality of life of SMA kids. The different machines, the amount of time spent caring for them, etc scare some and they assume that these kids are not happy. I will tell you, SMA kids are the happiest kids you will ever see. Despite the difficulties they face, they are always smiling. Some are not strong enough to smile but you can see it in their eyes. They are the smartest kids you will meet too, and no I'm not just biased :) They are much more mature, communicate well whether by speech or technology, go to school and graduate college! Why didn't the doctors tell me about that? Hmmm.?
When a family is diagnosed the doctors should say here is all of the equipment you need, here is the diet that works, here are some families to contact, and there is HOPE. If you found out your child was diabetic and needed insulin, there would be no option for it. They need it, they get it. That is how SMA cares should be. "Go home and love them, enjoy every moment,"? What the hell do you think we all do? Painting, family vacations, ball games, swimming, laying in the grass watching the clouds....these and so many more things we can do with our children, and do longer because we have ways to help them. Quality of life, I dare anyone to spend one day with an SMA child and say they don't have quality of life.
Ella may have machines that help her, that have saved her life....she may have to do treatments she doesn't like, or excercises to maintain her strength. She has to use a wheelchair and needs help with everything. But, its our life. We were chosen to take this path and we are enjoying every moment of it. SMA or not, our life with both of our children is wonderful...It's a Great Life!