The Fight of Our Lives: Fighting For Children With a Rare Disease

If you haven’t already realized it on your own, let me help you identify why you are exhausted, vulnerable, scattered, and shaken: We are in the fight of our lives.

I promised you I would keep it real and tell you the truth. And the truth is that this just might be the greatest fight we’ve ever had to fight or will ever have to fight. Let me break down why that is.

1. We have been thrown into a ring we didn’t ask to be in.

We didn’t ask to be in this fight. We had no say in it. Many of us didn’t see this coming. We weren’t prepared. We weren’t trained for it. Most of us have no idea what we are doing. Many aspects of a rare-disease diagnosis feel completely out of our control.

2. It’s an unfair matchup.

We are dealing with health, which is one of the most important aspects of life. The stakes are at the highest levels. Many of us are looking at scary statistics and facing unimaginable possibilities. Many of us are dealing with life-threatening illnesses. We are standing in front of a significant opponent. As a mother, our mission is to protect our child, and yet we can’t protect them from a rare-disease diagnosis.

3. The opponent is hitting under the belt.

This is personal. These are our children. They are our hearts. They are the very things that we hoped for, prayed for, and dreamed about. This is our family. This is our future. If we don’t step up and advocate for them, who will? There is an enormous amount of weight that comes with making decisions on behalf of someone else, especially when we so earnestly want to do our best for them.

When faced with something so beyond our control, the only control we have is how we react to it. We have three choices.

Choice One: We can let this take us down.

We can let this diagnosis send us into a downward spiral of despair. We can let it drive us to take up unhealthy vices. We can make it question the presence of God. We can let it shut out everyone we love. We can let it make us bitter or apathetic or numb. We can give up before we even start.

Choice Two: We can run.

We can choose flight mode. We can run fast and far the other way. We can deny. We can pretend it doesn’t exist. We can close our eyes and our ears and just ignore it.

Choice Three: We can stand up and fight.

We can decide here and now to take this on with all the strength, courage, and heart we can muster up. Yes, it is big, it is it unfair, and it is personal. But we can choose to fight anyway.

At some point after the diagnosis and the grieving, you’ll come to this realization: there are only these three ways you can go. Each one of us going through something like this has every right to go down the path of despair. Each one of us has every right to fall into a deep depression. Each one of us has the right to go back to bed, pull up the covers, and not emerge for a couple of years. But here’s the thing: All of these, while completely warranted, won’t change a thing. They won’t help your child or your family (or you for that matter). Often, we just don’t have a choice in the matter; despair is our body and mind’s natural reaction to stress. But taking the path “down” will not serve you or anyone around you.

You’ll have to decide for yourself how much time you want to spend agonizing over how this could happen to you and the why, why, why? of it. Although this is the most normal of human reactions to your situation, logically it’s also the utmost waste of time. Let me be frank with you, mama: you have plenty of other useful things you need to do. The less time you use on the why me? and why my child? is the more time you’ll have to actually help your child.

The truth may be that there’s no good reason why, and as hard as that is to accept, accept it you must. Acceptance allows us to take the next step, and the next step is critical. It propels you from your bed and onto your feet. It moves you from paralysis to action. Otherwise the only option is the opposite of acceptance, which is denial. Let me just say a little word or two about that.

I’ve heard so many stories of parents not taking their child to a doctor or specialist because they didn’t want to hear anything bad, or because they wanted to “wait it out.” I’ve heard parents insist everything is fine and not address the elephant in the room at all. Perhaps this helps them cope, and I can certainly understand that. But how much it is helping their child? And what if time is critical? That time could possibly be used to get the child the care they need.

Do not let fear have the final say. It’s okay to be fearful, but it’s not okay to allow that fear to immobilize you. You can be fearful and choose to fight anyway.

For your sake and the sake of your child, don’t choose to stay in denial. Staying in denial will not help you or your child. It will waste your precious time, and it will delay the inevitable. It’ll also keep your nerves on edge and your mind in a state of unrest. Is that better than getting the answers you need?

Yes, acceptance and forward motion is scary, but it can provide so much more than denial in the way that it will settle your swirling mind and give you information that will replace fear of the unknown. It can give you answers and provide clarity.

Once you wave away the fog of despair, resist the lure of denial, and choose to fight, you’ll start seeing a way forward. It happened to me one day. Somewhere there in my desperation, the human will to survive kicked in. Somewhere in the middle of the sadness, confusion, and angst, something in me welled up: the fight in me. I could lie down or I could stand up. I could let this send me into a coma or I could fight my way out of it. I still had two beautiful kids, an amazing husband, and a life to live. I needed to fight for Miles, who couldn’t fight for himself. I needed to give Mason a childhood despite our circumstances. I needed to enjoy my life with the man I loved.

You know what else happened? I got pissed. The reality of SMA, which I was told upon diagnosis, was that it would rob my son of the strength his body needed. Other well-seasoned SMA moms also told me that it would rob us of our time, our finances, our relationships, and on and on. But I decided right then and there that it wouldn’t rob us of everything. Enough is enough, SMA! I would fight against it robbing my older son of his childhood. I would fight against it robbing my husband and me of our love for each other. I would fight against it robbing us of our dreams, our joy, our sense of humor, our faith, and our hope.

Everything about this journey has been out of my control. But the one thing I have had control over is the choice I made a long time ago when my son was first diagnosed: that I would fight. That I would fight with all my heart. I would give it everything I had.

Our control comes in the way we allow it to change us. Make no mistake, if you allow it, or if you are not paying attention, it has the ability to change you in ways you may not like. It can make you bitter and negative. It can drive you to unhealthy habits. It can make you lose your zest for life.

But I believe if you make the conscious choice, you can see the way it sharpens important virtues, characteristics, and skills in a very profound way. You will become a woman who is incredibility resilient. You will become resourceful. If you are not already, you will become assertive. You will find your compassion taken to new heights. You will become brave.

Yes, the commission is great, the challenge is unfair, and the opponent is hitting below the belt. Yes, you are filled with worry, confusion, and indecision. You want to know what is at the root of your worry, confusion, and indecision? Fear. You know what fights fear? Faith. Taking on this fight is a leap of faith. You know what is the antidote to fear? Action. Start fighting.

Giving in to fear instead of standing up to it doesn’t allow you to grow your courage. Do not let fear have the final say. It’s okay to be fearful, but it’s not okay to allow that fear to immobilize you. You can be fearful and choose to fight anyway.

You can make a difference, mama. You can make such a huge difference by the way you choose to handle this diagnosis. By making the conscious choice to fight for your child, to advocate, to engage, to learn, to grow, to stand tall, to be resourceful, and to be courageous, you will impact the course of this diagnosis.

What choice will you make, mama? Will you join me in the fight?

I will be there on the sidelines, in your corner of the ring, offering you a seat, wiping away your sweat, and splashing water on your face. I will be there shouting out strategies, pointing out new ways to attack, and warning you of the jabs coming your way. I will be there cheering you on, telling you when you’re wearing down the opponent and when you’re making strides. I will be there reminding you to dig in, to find your guts, your moxie, and your grit.

This is the fight of our lives. Lace up your gloves and meet me at the ring.