You get the diagnosis. Your child has spinal muscular atrophy. Until that moment, those words – and the letters SMA – were meaningless to you. Now they are your greatest enemy.
You prepare yourself to fight. You dig in, past the initial denial and disbelief, and gather your army of family and friends around you. You set up the barricades around your child, your house, your life. Your battle plan is simple; you will stand between your child and the threat that is SMA. You will do whatever you can to defeat it. Damn the odds, SMA will not win. Not this time. Not your baby.
And so the fight begins. And, almost at once, you realize the combat zone covers far more territory than you ever imagined.
You fight to become an expert on this disease that no one has ever heard of, but impacts so many. You fight to find the protocols and the guidance to help your child grow and thrive, despite the devastating statistics. You fight to prove those statistics wrong.
You fight to find treatments that might help your child survive. And then you fight your insurance company as they deny those machines, that therapy, and that equipment your child so desperately needs.
You fight for referrals to specialists, whom you hope will bring support and solutions for your child. Then you fight those specialists to listen to you, when they instead point to the hopelessness of the diagnosis and the limits of medical science. And so you fight for the research that will put those limits to the test.
You are frustrated and exhausted, but you don’t give up. You never give up. There is no white flag to wave, and there is no room for retreat. You are fighting for your child’s life. You stand your ground and battle on.
You fight to raise SMA awareness everywhere you go, safeguarding your child against pitying eyes and callous remarks. Your smart, beautiful, amazing child is so much more than this disease, and you fight for people to understand that. Unfair judgments and uneducated opinions be damned.
You fight to create a world where accessibility is the rule, not the exception, and where your child has the same opportunities – to learn, to love, to live – as any other child. Where your child can experience anything they dream.
You fight for inclusion and acceptance, which you find in the SMA community. There, you connect with a group of people who are as passionate as you are. You learn from them, and you are inspired by them.
(But, truth be told, heightened passions often leads to conflict, and sometimes you fight them too. Call it friendly fire.)
Still, you keep fighting, lashing out at SMA, because that’s all you can do. You fight to bring order to the chaos. You fight to make the impossible possible. You fight for a cure.
You fight for every breath your child takes. And, you fight to calm the panic in the milliseconds in between. You fight to make it to the next day, because you know that tomorrow isn’t a certainty for anyone.
You fight to keep your child healthy with hand sanitizer as your weapon of choice. But illness can wage war from the inside too. This battle has more than one front. SMA is a wily opponent.
You fight for sleep, as sometimes imagined and often real alarms reverberate through your mind. You fight for comfort, as you reposition your child in their bed, again and again, until they can rest.
You fight to keep the fear at bay. Even on good days, you worry that SMA is hiding in the shadows, posed to attack. You fight so you child never feels your stress or shares your anxiety. So they never know your sadness.
You fight the uncertainty that accompanies every choice you make for your child. You let your child lead the way through the trenches, even when it gets hard and you’re terrified of the consequences. You marshal all of the strength you’ve got. If only you were as strong as your child.
You fight through the hopelessness to find hope. You have embraced this fight as part of you, part of the honor of having a child, and you’re prepared to fight forever. Optimism is a medal on your chest. Hope is your armor.
You experience victories, some little and some profound. You take nothing for granted. And you realize how much beauty there is in life’s every day details, which are so often rushed and overlooked. How much meaning is conveyed by quick glance from your child or a light tap of their finger. How much love surrounds your family, lifting you up and propelling you to take another step. Your fight is no longer a desperate rally, but a slow and deliberate march forward.
But SMA is unscrupulous, changing the rules of engagement as it progresses. Redrawing the battle lines. Drawing you off-guard and leaving your child defenseless.
And, as suddenly as it started, the fight is over. Your child is gone.
You pray that the end came on their terms. Not an ambush, but a peaceful surrender or one last heroic charge. That there was no pain, only glory in its place.
You are left behind, battle-scared and broken in a world bombed by grief. The army that once surrounded you disbands. Landmines – guilt, fear, anxiety, and even memory – threaten you as you try to make your way to a safe place. But, without your child, nowhere is safe.
You wonder what all of that fighting was for? How could SMA win?
The space your child left is too big to ever fill. Your house is too quiet without the whir of the machines. It’s too still without the daily exertion of caregiving. It’s too empty without the fight. Too painful. Too lonely. Too sad.
But it’s not without the love that you still carry with you. It’s not pointless. You won’t allow it to be. You want your child to be proud of you. You want your child to be remembered. You want their legacy to live on long after you are gone too.
The enemy is still out there. The battle may be lost but the war is far from over.
So you begin to fight once more.
August is SMA Awareness Month. Please join our fight against SMA.