4. I am scared.
I worry that I'm not doing enough. I am scared that my two other children are being left behind and aren't getting the attention they deserve. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Trenten's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. I am scared of how Trenten will feel when he sees other kids doing things he longs to do and can't. I am also scared of how Trenten will feel when he sees his little brother so the things he wish he could do, like play sports. Finally, I fear what will happen to Trenten if anything were to happen to me or how I will survive if anything happens to Trenten(or any or my kids for that matter). I am also scared that I wasn't the right person to be given this huge responsibility of caring for someone as special and amazing as Trenten. In spite of this, my fears have subsided greatly over the years because of my faith, family, and friends.
5. I am human.
I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, if I had the money I would...). I still have dreams and aspirations of my own. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which brings me to the final point...
6. I want to talk about my son/It's hard to talk about my son.
My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the rooftops how funny and cute he is, or how he accomplished something in school. Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Trenten. But it doesn't mean that I don't want to learn how to share our life with others(the reason for this blog, to learn how to share more). One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Trenten like the choir concert?" or "How's Trenten's physical therapy coming along?" rather than a more generalized "How's Trenten?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to share. I'm probably not sharing because it's been a rough day, week, or month and I'm scared that if I talk I'll start sobbing uncontrollably and that I will scare you and you will run away.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 12-year-old son Trenten is one of them.
Trenten has Duchenne Muscular Dystrophy. Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy.
DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys, but in rare cases it can affect girls. Children with Duchenne muscular dystrophy (DMD) are often late walkers. Trenten didn't walk until he was almost 2...Lack of dystrophin can weaken the muscle layer in the heart (myocardium), resulting in a condition called cardiomyopathy. Over time, sometimes as early as the teen years, the damage done by DMD to the heart can become life-threatening. The heart should be monitored closely, usually by a pediatric cardiologist. Beginning at about 10 years of age, the diaphragm and other muscles that operate the lungs may weaken, making the lungs less effective at moving air in and out. Weakened respiratory muscles make it difficult to cough, leading to increased risk of serious respiratory infection. A simple cold can quickly progress to pneumonia.
There is no cure for any form of muscular dystrophy....
Raising a special needs child has changed my life. I had never even heard of muscular dystrophy before I had Trenten. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand the true meaning of love. Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that brings me to the last thing you don't know about us special needs parents... We may have it tough, but in many ways we feel really blessed.
Until next time...
Jeri
