It's A Special Kind Of Grief

There is a special kind of grief that exists when raising a special needs child. The hopes and dreams I had for my child die a little more each day as I watch him move forward in life. When he was just five or six, I had hope that we would find a cure or a treatment to slow the progression of his disease, that he would function better. It was that hope that kept me going. Yet here we are at age 13, and while he is the smartest, kindest, and most gentle soul you will ever meet he has declined at an alarming rate.

It is hard to hope when your child pushes against an ever stronger current. 

The grieving never ends.

If you let your guard down for even a moment, some terrible incident will come slamming into you, reminding you that your child will never be like the others. He will always be different.  

To accompany the grief, there is its sister– guilt. 

Guilt that I did something to cause it.

That I should have noticed the signs sooner, gotten more and better treatment, sought a different course or path.

That I should be doing more, reading more, helping more, trying harder.

That I should spend more time, more money, more effort supporting my child.

That I should experiment with a different therapy, a different drug, a different teacher, a different diet.

Every mistake I've ever made haunts me. Every time we need equipment and we can afford it I blame myself for making poor decisions when I was younger. Every time I look at houses that would be perfect for Trenten and I know we can't afford them I die a little inside because I know that if I had made other decisions along the way we would be better equipped to take care of Trenten and give him all the things he needs and deserves. I feel like we will never find a way out of this and we will never be able to give Trenten what he needs and that if we do it will be too late because he will be gone and it will be all my fault.

Am I giving enough of my time to my two other children? Do they feel left out or ignored? Does Trenten feel resentment because his brother and sister can do more than he can? Are my other kids being forced to grow up faster because of all that Trenten goes through? Are they seeing things that are going to damage them for life? It never ends the guilt and the grief never go away. 

And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying — there’s always a judgmental comment or stare to put me back in my place.

Sometimes it brings me to uncontrollable sobbing.

I can’t make the grief or the guilt go away.

My anxiety directly correlates to Trenten's doctors appointments.   When he’s doing well, I usually do okay. When he struggles, I get worse. I’m sure it could be defined in some complex mathematical formula. All I know is that when he hurts, I hurt more.

And he always hurts.

But the love that we have doesn’t take our pain for him away. In fact, it just intensifies it. Because we can’t take his hurt away. We can try and try and try, and we DO, and it might even help a little, but we can’t make the pain that accompanies disability go away, we can't fix it and that hurts us even more. 

It's a unique kind of grief that never stops. 

Until next time

~J

DMD A Quick Breakdown

I get a lot of questions about what Trenten has and what the prognosis is. So I thought I'd put together a list with a few Duchenne statistics. 

About Duchenne Muscular Dystrophy (DMD)

• Duchenne Muscular Dystrophy (DMD) is the most common lethal genetic disease of children worldwide.
• It is 100% fatal.
• DMD is a progressive weakening defect of allthe muscles in the body, including the heart, and primarily occurs in boys.
• There is no cure, no treatment, and no survivors.
  
• Approx. 1 in every 2,400 boys worldwide is born with DMD; they die, on average, at about 16 years old.
  
• In about 60% of the cases, DMD is inherited from the mother; in about 40% of the cases the disease is the result of spontaneous gene mutation, meaning anyone's son could be born with DMD.
• DMD is a worldwide tragedy; kids of all colors, all nationalities, all classes, and all ethnic backgrounds die much too young, agonizingly, slowly, and painfully, from DMD.

It's not pretty but that's the reality of DMD. If you have any other questions don't hesitate to ask. 

Until next time 

~J

Things You Probably Shouldn't Say To A Parent Of A Special Needs Child

As a special needs parent, it seems that people have a desire to comment to me about my children, my parenting, my spiritual beliefs, my life choices and my future plans. Friends, acquaintances, family members and complete strangers are remarkably comfortable questioning and commenting on various aspects of our lives. Unless the comments are intentionally rude, I smile, I nod and I educate; however, that doesn't mean I'm not sometimes offended or put off by these comments. 

I work hard to maintain my belief that the world is basically good and that most of the people in it are good as well. To this end, I really want to believe that most of these comments, no matter how inappropriate, hurtful or insulting they may be, come from a place of good intentions that have gone awry.

I hope, I believe, I want so much for this to be true, because if this is true, then my belief in the goodness of the world might be true as well. And so, I write this list in the hopes that it will be read by some of those good people who mean well but whose words can still be as sharp as knives.

All of the following examples of things not to say come from things that have actually been said to me or other special needs parents.

1. "She looks so normal" or "I didn't know anything was wrong with him." 

There are many variations of this one, but I have always found these versions to be the most offensive. First off, what is normal anyway? I can handle typical, age-appropriate, even average, but not being "normal" implies what? That she is in fact abnormal, weird, bizarre? As for option two, there is nothing "wrong" with him. While he may have physical, mental and/or medical challenges that most children don't have, that doesn't mean he is wrong in any way. He is exactly who he is supposed to be and there is nothing wrong with that.

2. "He looks fine to me" or "you would never know to look at her."

If someone tells you that his or her child has any type of disability or challenge, the correct response is never to downplay this child's challenges by suggesting that they don't really exist or at least that they are not apparent to you. I guess this seems like it will somehow be a comforting thing to say, but in fact, it's just the opposite. First, please realize the amount of effort that has gotten the child to this place where they "look fine" to you. No, it didn't happen overnight. In fact, for many, it was hours of therapy, over the course of many years, not just having therapists see your child in your home and taking your child to therapy appointments but actually becoming a therapist yourself, living, breathing, dreaming about how to make everyday activities therapeutic for your child. All of this is lost in these comments. Furthermore, these comments bring the child's current challenges into question. If I am telling you about my child's diagnosis, it's probably for a reason, so to tell me he "looks fine" basically shuts down the conversation and makes me feel discredited.

3. "Is it genetic?"

It is definitely not OK to ask this unless you are a family member and even then you might want to tread lightly. As the parent where a genetic nightmare resided that I was completely unaware of before having children, I can tell you that this question is a time bomb. While I don't like to think about the fact that my genes are the reason my son has to be in a wheelchair and has to have back surgery in the very near future, the fact is, it's true. Please don't drudge up this negativity by asking me about genetics. For other people for whom the disability does not have a genetic cause, the undertone of this question is that you are wondering if they are somehow to blame for causing the child's challenges.

4. "He's going to grow out of it, right?" 

No, people don't grow out of muscular dystrophy or autism or any other disability. They don't grow out of PKU or hemophilia either. Of course we expect and hope and pray for continued progress, but also with the knowledge that these difficulties are lifelong. That is the end of today's common sense service announcement.

5. "Did you cause her to be in a wheelchair?" 

What would possess a person to ask this of a parent? Seriously, hard to even imagine the good place that went awry with a question like this. Don't ask a parent if they caused their child's disability; most likely they did not.  If they did, it was probably in a horrible accident and I suspect they would prefer not to discuss it.

6. "My uncle's brother's nephew's cousin has muscular dystrophy, so I know what it's like" or "My nephew's cousin has muscular dystrophy, too. He's really good at math. What's your son gifted in?" 

Don't for a moment believe that you know my experiences or the experiences of any other special needs family, no matter who you know. First, just like any other child, my child is unique. Would you presume to understand all there is to know about a child you just met simply by knowing their age and gender? If you've met one child with muscular dystrophy, you have met one child with muscular dystrophy. If you are interested in what it's like to live in my shoes, ask me, in a kind and respectful way, at an appropriate time. I assure you, you will not know otherwise.

7. "Why didn't you stop having kids after the first one?" 

Wow, seriously? How incredibly rude is this question? But since you asked, let me tell you a story. We always wanted at least three children. When my son became ill and we realized that his condition was genetic we decided that it would be unwise to have another child who could potentially have the same condition. However, having another child was important to us for so many reasons. But despite our plans and intentions, we discovered we were having another baby anyway. And we were excited, and scared and worried, and thrilled! This is my answer to why we didn't stop having kids; it's messy and full of sorrow and joy, and it's far from simple. This is not a chat I want to have in the checkout line at the grocery store, so don't ask.

8. "God only gives you what you can handle." 

What if I can't handle it, what if I'm trying to tell you that I need help, what if I'm falling apart or I know that something has to give because I'm just not keeping it together anymore? And what if before I'm able to share my grief and anguish with you, you tell me that God didn't give me more than I can handle. But he did, and I know that I have more than I can handle, and I am trying to reach out for help. This comment just squarely shut me down. Remember, if it takes a village to raise a typical child, it takes a large city to raise a special needs child. Whatever your thoughts are on God, I don't believe he intended me to have to handle all this tough stuff on my own. Furthermore, I have a hard time believing that God chose me and said, "hey, she can handle a whole lot of hard stuff, so I think I will give her a whole lot of extra stuff to deal with, and in the process, I'll cause her son to have terrible pain, lots of medical problems and a physical disability." I can't at all claim to know how children are chosen to have extra challenges, but I don't think you can either. I prefer to believe that God helps me handle whatever challenges are in my path to handle. We all believe what works for us; please don't try to push your beliefs on me.

9. "Have you tried juicing?" or "Why don't you watch this movie about the keto diet?" 

These sorts of comments are so incredibly unhelpful. The implication is that somehow you know more than the team of highly trained medical specialists treating my child. While I am all for natural interventions, I also realize that we are very lucky to have modern medicine and I intend to work with my child's medical professionals to responsibly combine natural and modern medical treatments to give him the best of what both can offer. The other issue here is that there is an implication that juicing or removing red dyes, or a gluten and casein free diet, or cranial sacral therapy etc. will somehow be a cure-all. Now don't get me wrong, I am willing to try almost anything that might help my child, and I know many families who swear that they have seen improvement with these sorts of techniques, and who am I to say otherwise? However, please don't suggest that any of these are going to cure my child. Because I will argue that if you know someone whose permanent disability was cured with juicing, they probably didn't have it in the first place!

10. Comments on work, such as: "It must be nice coming late" after running around all morning at appointments or "It must be nice getting to relax all day since you don't have a job." 

Taking care of children with special needs is hard work, period. Whether a parent works outside of the home or not, assume they have a full-time job (and by that I mean 24 hours a day, seven days a week).

11. "He's one of God's special angels." 

Seriously? Yuck! If I thought this was something you said about all children I guess I could stomach it, but reserving it for kids with special needs is just patronizing.

12. "How in the world did you break both your legs?"

Orthotics aren't familiar to most people who don't know someone who uses them. So just know this: they are not casts and they are not typically used in the treatment of broken bones. When people see a child in an orthotic, they often ask if they broke a bone or assume they had an injury. It's very confusing to a small child who did not break their legs or injure themselves to be asked all the time how they got hurt. Unless you see a cast, assume it's not a broken bone. For that matter, many of our kids wear casts during stretching regimes for weeks at a time or for constraint therapy to encourage them to use a weaker hand by constraining a stronger one. So I guess it's never safe to assume.

13. "I don't know how you do it. You are a great mom" or "I just couldn't possibly do that!" 

We all do the best we can with the situations we are faced with in life. Trust me, I never dreamed that I would be able to do all the things I do on a daily basis. I never expected to know about orthotics, or to have a good relationship with our pharmacist who knows me by name, or to know what a physiatrist is. You love your kids and they need special care so you give it to them, period. Don't presume that caring for my child makes me Supermom. Tell me I'm a great mom because I laid down the law and set my kids straight when they were acting up. Or because I managed to sneak vegetables into mac and cheese and no one noticed. Taking care of my kids doesn't make me a great mom, it just makes me a mom; that's what we do.

14. "I can't believe you give her (insert medicine or medical procedure here), I would never give that to my child." 

Well thank God your child doesn't have the medical need for it, for goodness' sake, because if they did I'm sure you would rest on your laurels and not give them the lifesaving treatment they need. Seriously people, think before you open your mouths. Furthermore, this difficult and complex decision rests with my husband and me and the team of highly skilled specialists who treat our child. We have this under control, so feel free to donate your two cents elsewhere on this matter.

15. "I nearly had a stroke" or "I think I'm going to have an epileptic fit" or "Are you retarded?" 

We can be a bit sensitive about these sorts of things. The "R" word is a real issue for me. It's just so offensive and outdated. To hear grown adults using it is shameful. It was offensive to say in high school, but we didn't know or understand, or maybe we just didn't care. However, everyone should know and understand now, so the message you're sending if you're still using it is that you don't care.

Comments such as "I nearly had a stroke" can be really offensive to a parent whose child did in fact have a stroke. Just be conscious of your audience and think before you speak; truly, that's good advice for any occasion.

Now you know 15 things not to say to a special needs parent. Keep an eye out for an upcoming sequel where I will delve into alternative things to say to parents with a disabled child. Feel free to share your ideas for that blog in the comments below.

We Are In A Race Against Time...

Every parent of a child with Duchenne muscular dystrophy remembers the moment they heard the diagnosis. Inevitably they asked, “What can we do?”   The simple and unthinkable answer?  “Nothing.”   When we first hear it, however, most of us don’t understand how profound that ‘nothing’ is.  A Duchenne patient cannot exercise to get stronger.  He can’t “work harder to battle the disease…”  It won’t “get better with time.”  Nothing we expect is true.  We are raised to believe that we can surmount any obstacle if we work hard enough.  The challenge of this diagnosis is that ‘working,’ in the way we often think of it, speeds the disease.

Birthdays may be the most obvious example of this. We celebrate the fact that we’ve been blessed with another year with Trenten, and we mourn the fact that another of the too few precious years that Trenten will be alive has passed.

It’s as if my son is a perfect ice sculpture of himself and I desperately want to stop him from melting… I know, however, to complete the metaphor, that I can’t simply put my son on ice – he is a boy who wants to play in the sun. So I let him, and I find joy in his vibrancy and life.  Trenten is magic, like Frosty the Snowman. And like that mythical character, he won’t be held back. “And he said, let’s run and we’ll have some fun now before I melt away…” So I watch my son melt because I love them too much not to let him.

In the world of DMD, the words “conventional progress” make no sense.  In fact, when it comes to DMD, the only ‘progress’ we can depend upon is the steady ‘progress’ of the disease – which is no progress at all. It is, of course, the exact opposite, the ongoing regression of Trenten's physical abilities.  It may be that hard reality – coupled with the fact that Trenten can’t work to stop this disease, that we, his parents, his community, are driven to work so hard.

But our time is short. At 12 years old, it is possible that my son has just 6 years.  We are in a race against time, time is not our friend, and I am scared we won't have enough time...

Until next time

~Jeri

Dear New Parent Of A Severely Disabled Child

Dear new parent of a severely disabled child,

You are about to enter into a whole new world. Your life is about to be turned upside down. Nothing is ever going to be the same again.

Your are going to spend more time in hospital than you ever thought possible. You will see things there that you hope to never see again...but you will, over and over and those things will be happening to your child. Those things will be done to your child. You will learn to hate the hospital, especially the smell...

But one day, if your child makes it, you will go home with that child and that's where it really starts...or ends, depending on how you look at it.

You will work harder than you have ever worked, sleep less than you have ever slept, spend money at an alarming rate. You will do things you'd never even heard of, and things you'd heard of but hoped you would never do. You will acquire an intimate knowledge of body fluids, and of pain...your kid's and your own.

And there will be choices to make: awful, terrible choices. Some will involve life and death. Most will involve the lesser of evils. And no matter which choice you make, someone will tell you that you are wrong.

Then you will lose many friends, and some family.

And you will be scared to death. And you will cry...a lot. And, in the end, there are no guarantees that you are going to make it through.

But, you are not alone. You're not the only one doing this day to day. Some of us are, indeed, making it through, and not only making it through but actually living and providing a life for our severely disabled child. You might make it too.

If you learn to see the doctors as merely human, and medicine as an art, if you do your own research as well as consider their views, you might make it.
If you learn to trust your gut and then speak up, you might make it.
If you learn to pace yourself, ask for help, seek it out where it's available, you might make it.
If you learn to let go of everything you thought life was "supposed" to be about, all the norms and expectations, if you learn to live with less and appreciate what you have more, if you develop creative ways of finding respite and joy, you might make it.

You will have to confront pain: not mix yours up with your kid's. You will have to learn to deal with your own and accept that you can only do your best to mitigate your child's. You will learn that feeling guilty is a waste of time and energy and can only paralyze you. Then you might make it.

You will have to let go of the future and deal only with the present. You will have to deal with everything one day at a time...sometimes one hour at a time. Then you might make it.

You will need to understand about "blame". God or devil, karmic debt, random fate; you will never know "why" it happened. You can seek compensation where compensation is due, with the understanding that it won't change your reality in the end. Your only defense is your attitude.  You might make it if you let go of blame.

In time, the fear will ease, the tiredness become routine, the new life you are leading okay because it's your child. You will love that child deeply and immeasurably. There will come joy in unexpected ways. You will see strength and not just vulnerability. You will understand your child is some "one"...someone who is here to live life just as you are, and has the right to do so, as fully as possible. And you will learn to do that together...and you will both "make it".

Until next time

~Jeri

Buy a Shamrock Today, Help Fight Back Against Muscle Disease

Chances are you’ve walked into your local grocery store, convenience store, home improvement store or neighborhood restaurant during February and March and seen green paper shamrocks lining the windows and walls.

Nearly 31,000 dedicated retail locations unite with the Muscular Dystrophy Association every year to make a bold statement by raising awareness and critical donations to help people with muscular dystrophy, ALS and other related life-threatening diseases live longer and stay stronger.  

Muscle disease takes away everyday abilities like walking, jumping, running, dancing, hugging and sometimes even swallowing, talking or breathing.

Every MDA shamrock you see represents progress in the fight to end muscle disease.

How do paper shamrocks help save lives? Here’s how it works:

1. Generous retailers and their employees in communities nationwide sell MDA shamrocks to customers at check-out for $1, $5 and larger contributions.
2. When you add a shamrock to your purchase, your shamrock is scanned and added to your receipt. You write your name on the shamrock and it is displayed proudly in the store.
3. Every contribution — one dollar at a time — adds up to help support families living with muscle disease through state-of-the-art clinics, summer camps, support groups and more. They also enable MDA to fund worldwide research to find treatments and cures. Read more about how shamrock donations make an impact here. 

   Find Shamrock Retailers in Your Community

   With tens of thousands of retail locations participating in the MDA Shamrock program — our nation’s largest St. Patrick’s Day fundraiser — you can easily fight back against muscle disease where you regularly shop to help kids and adults live longer and stay stronger. MDA is grateful to these national Shamrock partners who are helping conquer muscle disease. Contact your local MDA office to learn more about the retailers selling MDA shamrocks in your community. Did you know … ? Eight out of 10 of the top fast food chains in America participate in the MDA Shamrock program or another MDA fundraising program at check-out. Three out of five of the top convenience store chains in America participate in the MDA Shamrock program or another MDA fundraising program at check-out. Five out of 10 of the top grocery store chains in America participate in the MDA Shamrock program or another MDA fundraising program at check-out.

Hope for muscular dystrophy patients

Check out the link below. It may not help every kid with muscular dystrophy but if it helps even just one then it's worth it! 

http://www.sciencedaily.com/releases/2015/01/150115102839.htm

Until next time...

Jeri

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 

For My Little Girl When You Are Older

This is for my beautiful daughter for when she is older. She is the most precious gift that I have ever been given. I'm so lucky to have been blessed with her in a house full of boys. 

To: My only little girl,

I love you. You are beautiful. As you grow up, you will hear that you are not beautiful but you truly are. Teenage boys, or mean girls, might laugh at you or say mean things about your appearance. If you let them, these comments can cut deep and leave permanent scars. In addition, many forces in the world will work very hard to convince you that you’re not beautiful enough, or that you need to look a certain way to be beautiful. Don’t believe them. They are wrong, and their messages are self-serving. People want to put you down in order to feel better about themselves. Don't give them that power. 

Be prepared to work hard. It’s the only way you will succeed. It’s great that you’re smart and beautiful, but that’s by the luck of the draw. The reason I’m proud of you is not your beauty or your talent – it’s your willingness to work hard and improve yourself. 

Be very careful about the people whom you hang out with and allow in your life. Whether friends, partners or spouses, choose people who make you feel good about yourself. If they put you down, drain your energy or if you feel worse after being with them than before, stay away from them. Also find yourself a good man. A “bad boy” is called bad for a reason. He is bad for you. Find someone who will treat you with love and respect. In other words, to borrow from your own preteen world, everything that Lady Gaga sings about when it comes to love (“I want your ugly, I want your disease”) – do the opposite. 

Respect yourself and your values. If you stick with what you believe in, and don’t allow others to influence you and pressure you to do things you don’t want to do, they might moan and whine, they might threaten to leave you, fire you, not be your friends anymore – but at the end of the day they will respect and admire you. More importantly, you will respect yourself. 

Respect money. Money is not a goal in itself, but it is your ticket to freedom – freedom from financial worries, from the need to work for a living. Being financially independent gives you more control over your life and more choices, including the choice to do work that you love and to give to causes you care about. Be ready to work hard, save aggressively, invest wisely, and build your own wealth. Never depend on anyone else to “take care of you” financially. 

Be careful. Most people are good, but there’s enough evil out there, that you should guard and protect yourself against it. Bad things happen to good people. Being aware will not always prevent bad things from happening, but it’s the least you can do. 

Talk to me. I’m always here to listen. I can probably help, too, if you want me to. Never think that you’re alone, or that no one can help you. Even if things are really bad, even if you think you’re alone in this, know that your parents, can be very helpful in offering perspective and in helping you out of situations that seem too complex to handle. It’s called age and life experience, and it does have value. If something feels wrong, if you have a gut feeling that tells you something is wrong, it probably is wrong, and you have the right to stop it. If you can’t stop it by yourself, tell me about it and I’ll help you. You will make mistakes. We all do. Learn to have a short session where you learn from your mistakes, but then forgive yourself and move on. 

Lastly have fun. Yes, I want you to work hard and stay true to your values, but life is so incredibly short and you only get one chance. So don’t forget to laugh and sing and dance and notice the beauty around you, and if you feel like splurging once in a while, that’s OK too. Don’t allow life to become a huge “to-do list” that you have to go through as quickly as possible. Slow down and enjoy the moment because if you don't life will pass you by and you will miss out on all the crazy/beautiful things that life has to offer. 

I love you my darling, my most precious gift in a house full of boys. 

Love Mom