The Unspoken Truth

Since becoming my son's mother, I have become particularly sensitive to people's reactions and responses to my son and other children with special needs. My son has special needs. And when you know that, you might think that you know my son, but there is so much more you don't know. My son loves Mine Craft more than I love sleep. He gives amazing hugs and has a smile that could stop war. He has a wicked sense of humor, a preference for bakery bread over regular bread, and has the ability to remember small moments in time that you or I would forget but he holds on to them and never forgets. But many people never get to know that, or him, because they see only his disease.

It's easy to assume that a child with special needs is nothing more than those needs. Easy -- until you spend a minute or two with the child in question. And that's really all it takes: You will quickly discover that kids with special needs are kids, first and foremost, with distinct personalities and preferences.

Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list of the things that I don't ever say out loud with the goal of building understanding.

1. I am tired. 

Parenting is already an exhausting endeavor. But parenting a special needs child takes things to whole different level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. 

It's a hard one for me to come out and say, but it's true. When I see a 6-year-old do what my son can't at 12 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to to do something that comes naturally to a typical kid. It can be hard to hear about the accomplishments of my friend's kids. There are days when it's impossible to watch families with healthy kids. Sometimes, I just mourn inside for Trenten, "It's not fair." It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I feel alone. 

It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible for being jealous when I hear them brag about how their 12-year-old had an awesome time dancing at the middle school dance, or that their kid is having a great time in track, football, baseball, or hockey or that their kid just got their black belt in karate. I want to be happy and excited for them and deep down I truly am but I also wish I could brag about those things for Trenten. If you are raising a special needs child you should check out Shut Up About Your Perfect Kid. It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications and therapies. Or sharing stories of accomplishment that might not seem big for the average child but for Trenten it's a HUGE accomplishment. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

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