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| SMA Candle lighting 2014 |
August is SMA Awareness Month 2014
Spinal Muscular Atrophy it was such a big scary word when we first heard it. Number ONE genetic killer of infants under two, 1 in 6,000 babies are born with SMA. Spinal Muscular Atrophy (SMA) refers to a group of inherited diseases of the motor nerves that cause muscle weakness and atrophy (wasting). The motor nerves arise from the spinal cord and control the muscles that are used for activities such as breathing, crawling, walking, head and neck control, and swallowing. SMA affects muscles throughout the body. In the most common types, weakness in the legs is generally greater than in the arms. Sometimes feeding, swallowing, and respiratory function (e.g., breathing, coughing, and clearing secretions) can be affected. When the muscles used for breathing and coughing are affected and weakened, this can lead to an increased risk for pneumonia and other respiratory infections, as well as breathing difficulty during sleep. The brain’s cognitive functions and the ability to feel objects and pain are not affected.
Scary right? Let me tell you what SMA means to this family.
For starters how about determination: We do everything we can to help Declan, we quarantine ourselves during winter, we feed him as many times as we can, we get up all night long to turn him. We are determined to keep him healthy. Declan is two (and a half) and is still exceeding the doctors expectations. I think he is just as stubborn as his parents and no one will tell him how his life is going to be.
Knowledge: Before SMA came into our lives we were blissfully unaware of the struggles of others in the world. There wasn't much information on the internet and what you did find was all bad. But with the sadness came newly formed friendships, and help from other struggling families. I believe the knowing of " YOU'RE NOT ALONE" helped us more than anything. Declan is different with his symptoms and his mutated gene. He doesn't match everyone out there. But I know if I have a question or I need to rant I can count on these families to understand. They understand the exhaustion, the fear, the humor and love that comes with SMA. Now we know how blessed we are.
Humor: You wouldn't think anything about these kids struggling with SMA would be funny, but holy cow Declan makes me laugh daily. No he can't run up to me and tickle me, or laugh while saying mommy. But Declan loves to laugh, and with how dark SMA can be we need to laugh. Declan has a war cry. His swords are straws and he always has to have two, but he will raise his hand up and let loose a loud and long war cry "AAAAHHHHHH!" before swinging down that mighty straw. Or giving his sister kiss after kiss, or saying a word out of the blue, or he starts singing with the music on the radio. This kid is magical, where ever he goes people smile, and if you're really lucky you will hear him laugh. It's a beautiful sound and so very dear.
Patience: I talk about this a lot, and there is a reason for it. I am "short fuse mommy", I like things done quickly and correctly. I love my sleep, and love my caffeine even more. So when Declan came along and I gave up my sleep, and gave up the clean house, and yes even showers got postponed, I was a bit on edge. Then I would look into these bright blue eyes that have so much love in them. It's like looking into a soul of an angel so pure, so clean. I would do anything to make sure those eyes stayed bright. (don't get me wrong Declan has his devil moments, he has a temper too, and we don't always see eye to eye with one another, usually at 3am in the morning...) I began to listen, and wait. I've come to terms that my house will not be magazine worthy, and that my hair will always have that wilted "I haven't been to a salon in years" look, and my eyes will have that tired look to them. I will tell you what I got in return. Two years worth of physical therapy and Declan can move his right hand and arm all the way up and even lift his shoulder off the floor. He is wiggling his toes, and working on kicking his legs. He is reaching for me! He has taught us anything can be accomplished with TIME. We don't have to rush, we just have to experience every painstaking small feat along the way.
Strength: I'm not just talking about the added arm muscle I am gaining from carrying this boy around. I am talking about adding strength to my soul. In the beginning we were pretty shocked, and I know I cried a thousand tears. With each passing day we became stronger in our core. Instead of just sitting there waiting for death to claim our little boy, we acted. We dealt with things we could see and let go of what we couldn't. Our son doesn't have any muscle, ok then lets start physical therapy, then we added occupational therapy, developmental therapy, and speech therapy. I learned baby massage, and continued to act. Declan doesn't need a mom that can't handle hard things, he needs a mom that will fight for him. I argue with the doctors, and medicaid, and make phone call after phone call to make sure he gets what he needs. I'm not afraid to stand up for my son. My son doesn't have the strength to fight for himself yet, so we will.
I'm sure I can go on and on about what SMA means to us, but I will just talk about one more, and it is the most important one.
Love: Oh my goodness what a powerful word. My heart just bursts thinking about how much we love this kid with SMA. I truly believe these kids come down to teach us how to love bigger and better. We are connected, mind, body, and soul. When he hurts I hurt, when he is happy I am happy. Declan and I have a bond, everyone who knows us, knows this. He is my baby, and I am his mother. The love just pours out of him. I hope everyone gets to feel this way someday. It is magical.
Spinal Muscular Atrophy... yes it's a horrible, unforgiving disease, but I'm not going to talk about that side today. Today is a day for hope, and joy, and to remember those that lost the battle, but left behind a lasting impression. I am terrified of losing Declan, but I can only deal with the now. Declan is healthy, growing, and laughing. The end of September he will be going in for back surgery where they will be putting in a Veptr like rod into his back. We are staying positive and are very interested on how this will effect Declan. Our hope is he will be able to breath easier, eat more, and sleep without pain. The doc said he would probably gain about four inches after the surgery. I will try to keep you posted.
I want to say a huge thank you to our family and friends that put up with our crazy needs. We know we don't get to see you all that much, but hopefully you understand we still love you guys and we are always willing to help where we can.
Thanks for reading about Declan, and you can help spread the word about SMA by sharing. If you feel like donating you can always go to:
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| Declan in his stander |
