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

Living With Duchenne

At first, I wanted to run when my mom gave me the news that I didn't want to hear. "Trenten has Duchenne muscular dystrophy"... In my 20 year old mind I truly thought that if we didn't talk about it then it wouldn't be real. That is simply not the case, how young and naive I truly was. Hearing those words cut me so deeply and changed me in ways that even 10 years later I still don't fully understand. Telling Mike the diagnosis of his first child, his first son was by far the hardest thing I've ever had to do(well besides admitting to myself that Trenten has DMD). You know immediately your dreams and hopes and visions are shattered on the spot. We were devastated, we couldn’t comprehend the fact that our son, our nephew, our grandson, our perfect little miracle would end up in a wheelchair and his life would be cut short. But that’s only part of it, and I’m beginning to realize the actual reality of this disease. 

 Duchenne Muscular Dystrophy (DMD) is not only the most common, but also the most severe form of MD. DMD affects approximately one out of every 3,500 male births worldwide, (and, more rarely, can affect girls) who cannot produce dystrophin, a protein necessary for muscle strength and function. As a result, the skeletal muscles in the body gradually deteriorate over time. While two-thirds of DMD cases have a family story of the disease, Trenten is among the one-third who have no such history.

Many people incorrectly assume that a child with Duchenne will lose the ability to walk, and nothing else. But nothing could be further from the truth. The reality is, Duchenne affects pretty much every single part of their body. Think about it – there are muscles in our legs, our arms, our torso, our neck, and of course our heart and diaphragm are muscles.

 There really is no way to sugarcoat the reality of Duchenne. It sucks. Big-hairy-balls-kind-of-sucks. It’s not as simple as just never being able to walk again – if only that was the case. It affects everything, from the way our kids live their lives, to the extra care needed by us (his parents). It affects our family financially, emotionally, and mentally. 

Mike and I never asked for Trenten to be afflicted with such an insidious illness, and Trenten most certainly never asked for it. And yet here we are, having to figure out how in the world we are going to pay for expensive medical equipment, breathing machines, air ventilation units, modifications, wheelchairs, accessible vehicles, treatment, and therapies, many of which we don’t receive funding for. Our son will eventually need a bed that turns him throughout the night, a bed that we will probably never be able to afford as they cost tens of thousands of dollars. Trenten needs a wheelchair-accessible vehicle, and they don’t come cheap. Nor do the modifications on existing vehicles. We recently had our van modified and it cost $22,000!!! Most families don’t have $1,000 lying around, let alone $22,000. And yet we figured out a way find that money just so we can transport our son from one place to another. Next is a handicap accessible house and I have absolutely no idea how we are going to pay for that and it terrifies me. 

I think one of the most heartbreaking aspects of having a child with DMD is the affect it has on Trenten and the rest of our family. Gone are the normal family activities, like bike riding  and hiking and snow skiing . Partaking in any of those activities would mean that Trenten would have to sit out and watch or stay home, it's just not fair. Trenten is now 12 years old and is fully reliant on his wheelchair. Which is more than he was even just a year ago. It won’t be long before it will all be too hard and that is a really scary reality that we as a family are faced with daily. 

 It’s often difficult for extended family and friends to understand the difficulties in our lives compared to theirs. I think it’s safe to say that anyone who doesn’t change when hit by something like DMD is both inhuman and devoid of all emotion. I have changed, I’m not the person I used to be. I miss the person I used to be, but I know I will never see that person again. Whereas I used to be happy and carefree, now I’m just scared and sad. And I’m on a mission to give my son (and my other 2 children) the best life possible, even if that means upsetting others in the process. I’ve learned that life is not a popularity contest, but I’ve also learned that life is short and uncertain, and time is too precious to waste. Even though it’s reported that kids with duchenne are living into their twenties and thirties, that seems to be the minority. The fact is, many kids with Duchenne are dying while they’re still kids.

Duchenne means a lifetime of doctors, medications, appointments, school struggles, expenses, and heartbreak. It puts mothers and fathers under stress that no marriage should have to try and survive. It means siblings get left out, pushed aside and ultimately left behind by their brothers illness. Duchenne alienates family members and rips apart friendships. Duchenne hurts, both physically and emotionally. It is a backache from too much lifting, and a headache from too much crying. Living with Duchenne means heartache, helplessness, fear, and grief. It is a lesson on patience, acceptance, and loving even when it’s hard. And it gets breathtakingly hard, for all of us.

 So if you are a family member or a friend of ours, please try to remember what we going through. Please remember that we need your support, and we need your love. Most of all, we need you there when times get especially tough or overwhelming. Please don’t judge us, and don’t put such high expectations on us, and please try to show both understanding and compassion. Let this blog be a turning point for you, so that you now truly understand what “living with Duchenne” means and use your knowledge to make a difference. And never, ever, ever make us feel bad because we’ve changed and are no longer the people we used to be. The more understanding and support we have, the more awareness and funds we can raise, and the faster research will progress. And the easier our lives will (hopefully) be.

Until next time...

Jeri