A Spinal Muscular Atrophy Mother Story
August 24, 2000 Evan Breton was born at 8:10 p.m., weighing 7 lbs 3 oz. When I first looked at him, I was disappointed. He was not good looking and I thought to myself "Oh my gosh, are Garth and I that ugly?". He was then taken away to be cleaned and examined. I was grateful he was normal and healthy. He scored really well on his Apgar a nine, yelled, kicked and was completely perfect, for that I was pleased.
As a new mom I was extremely careful and protective of my new bundle of joy. I would wake up at night to make sure Evan was still breathing. I tried not to take him out too much in case he would get sick. I also cringed when people asked me to hold him in fear that they would drop him. I was rapidly falling in deep love with Evan.
What a good baby, I was truly blessed. Evan rarely cried and when he did it was soft and not annoying. He was so alert and strong. Everything was going well, Evan was developing normally. Motherhood was not that bad and the best part of it was that Evan was getting cuter and cuter.
At five months old I had a nagging tug telling me there might be something wrong with my Evan. My strong boy was not so active as before. I kept telling anyone who would listen about my small fear, in hope that someone would tell me how they too knew of someone with the same situation and the child would always turn out just fine. Evan was not lifting his head when on his tummy, he had great difficulty at rolling, and was just plain lazy. I took him to his pediatrician and he told me that all babies were different. What a relief, Evan was fine just as I kept convincing myself.
At six months my nagging feeling was now a full-force attack. I knew something was wrong with Evan because he had stopped kicking his legs. It all happened so gradually. I was the only one aware of this change in Evan. Garth kept saying he was just a lazy, easygoing baby. My instincts told me it was more than that. Great fear and panic were settling in. I tried to push my stomach-turning fears with logical explanations and always gave myself answers to the "maybes" and "whatifs". I took Evan to the pediatrician and he too became concerned when he noticed Evan had become hypotonic (floppy). My fears had now become reality. Something was not right. I was terrified. We immediately had an appointment to see a pediatric neurologist in three weeks. As we waited for the neurologist appointment, my bond with Evan strengthened even more. I was deep in love with him. He smiled at me and relied on me for protection and security. I breastfed Evan and loved to hold him close to me. My breasts and their powerful milk were divinely made just and only for him. I would do anything for Evan. Evan became a gorgeous baby. I would receive compliments on his looks everywhere I went. In fact, if someone did not comment I wondered what was wrong with them.
The appointment day with the neurologist finally arrived. I did not want to go. I would rather not know what was wrong. I would rather have hope and live in denial. But I was curious to know the truth and find out what could be done. I knew it could not possibly be that bad since Evan had never had a cold or even a diaper rash. Surely some physical therapy would be all that was needed. Evan was so alert, bright, and healthy. I knew the neurologist would tell us it was no big deal and send us home relieved.
As soon as the neurologist walked in the room my heart sank. His face was expressed with deep fear. He wanted to know if my pregnancy was problematic. Was my delivery traumatic? Were Garth and I related? Did we have any other family members with muscular problems? Why all the negative questions? My baby was fine. Look at him, he is healthy, he is fat, he is smart, he is sociable. So what if he does not kick his legs. It is not like he is having seizures or looks sickly or abnormal. He is fine. But my heart sank deeper and my fear was on full alert. The neurologist kept his saddened look. He then told us he thought Evan had Spinal Muscular Atrophy. We had never even heard of such a name. He said a blood test was needed to confirm his suspicion. That was all he said he could say until the results were in. I lost it. There was something wrong with my baby. The doctors were supposed to agree with my hope, that Evan would be fine. Rather they gave fuel to my raging fire of fears that were consuming my soul.
My oldest sister gave me a print-out she got from the internet. It read Spinal Muscular Atrophy (SMA) is a recessive disease characterized by degeneration of the anterior horn cells in the spinal column. One out of forty people are carriers of this gene. Babies with this disease die within two years. The word die, die, die...echoed in my mind forever.
We expected the call with the results on Good Friday. I did not want the phone to ring. My maternal voice had already gently and softly told me that Evan had SMA. The phone rang and the doctor immediately confirmed that Evan had SMA and there was no cure. My nightmare had now been given permission to become very real, enter our lives and to haunt us mercilessly. I was fine until I asked "what am I supposed to do? Wait for him to die?" The doctor could not reply.
Darkness filled my inner soul. It was pitch black and with no hope of even a speck of light. I was alone. I could see through the window the blue sky and the trees gently dance with the wind. I had died inside. Could someone please help me? Could someone please rescue my baby? How could outside go on while I was gushing profusely with grief and immense fear? Why could no one hear or shut the screaming of my heart? The flames of hopelessness and panic exhausted every cell of my body. I wanted to die. My life had been brutally torn and no one, no one could help us. I felt so alone, so betrayed, so mad, so useless. I was Evan's mom, I was supposed to do everything I could for him and all I could do was cry and watch my precious baby be slowly taken away from me. How am I supposed to live when all I had to look forward to is my son's death? How do I breathe when every breath I take means one less breath for Evan? Where do I run to when all of earth's resources have slammed shut their doors?
I looked to Evan and he SMILED at me. Energy bolted to my soul and I knew Evan was the only one that could help me from going mad. His smile gave me life. Evan was worth living.
Damn you Spinal Muscular Atrophy! You may take my son but I will fight you with all that I have. And even though I must every day fight against your evil punches of depression, jealousy, rage, exhaustion, and fear I will get up and step in my own shoes again. I too will throw punches at you for I will be an excellent mother, I will look for what they tell me I will not find, I will keep my marriage strong, and you may rock my faith but I will not let you crumble it down.
You, Spinal Muscular Atrophy, have met your match. I am a mother. I will fight. If you take my son you take only his body. Evan is mine, and I will carry him inside of me forever.