Parents of sick kids: You are not alone

This editorial column by Maria McCoy previously appeared in the print edition of The GRIP.

I have previously written about those who suffer their disability in silence, but I want to touch on a subject with which I am incredibly familiar. I want to talk to the parents of the sick kids. I want you to know that I see you. I feel you every time you take that deep breath to pick yourself up again. I see you when you take that shallow breath because you are afraid for what happens next.

You have struggled ever since the diagnosis. Your child is sick. It doesn’t matter what disease they told you and it doesn’t matter what the prognosis is at this point. Your life has irreversibly changed. You now adapt to a new schedule. Medications, doctor appointments, sick days you can ill afford to take off. Your child needs you though, so you do what you must do to be there.

Hospitals become your second home. Sometimes, we call Scottish Rite “vacation” because that somehow makes it seem less dreary than what it really is – the place we go to keep our children alive. We have spent hundreds, no, thousands of days and nights in this hospital and others. The nurses know us by name and they are always so cheerful. There is nothing cheerful about a sick child. Not really. There are a whole lot of times you pretend to be cheerful, so the kid doesn’t focus so much on their reality but in the back of your mind, you cannot escape your own reality.

You are the one who watches out the hospital window, thinking about life that goes on and on without you guys. You miss your other kids. You miss concerts, practices and other appointments, because your life is on perpetual hold for as long as you are in that hospital.

Those siblings suffer the effects of this life, too, and it’s so dang unfair. Your time is split because you are either stuck at the hospital or stuck in traffic getting to and from the hospital. Your feelings are torn between wanting and needing to be at the hospital but wanting and needing to be with the kids you leave behind each time you guys are admitted. Facetime and messenger do not compare to being with your kids.

I understand this life. I know this life. I know you. I know that while the child is asleep, you sneak out to get some sort of different scenery to look at. I know you hide food because you don’t want to eat in front of your baby, who isn’t allowed to eat. I know you go to the gift shop every day you are there, wishing you could afford to buy the Lego’s they are selling for $45 when you know you could buy them at Wal-Mart for half of that, but you can’t. Not really. Because you are there, and Wal-Mart is most assuredly not.

I know you take crackers, fruit snacks, candy, popcorn – any sort of food you can buy in bulk for cheap – because it costs so much to eat at the hospital. I know you pace the halls, waiting for an opportunity to see the doctor or their staff, so you can try to get answers without your child hearing. I know you go to your car to cry because you already know no bathroom is safe to do so in. I know you say, “Yeah, he’s been doing really well!” because you are tired of answering questions, and tired of others who mean well but can’t possibly know how devastating the answer to that question is sometimes.

I know all this because I have lived this life for 16 years. I have experienced all this and more in those 16 years, and I am here to tell you that you are not invisible, and neither is your child. I want you to know that it’s okay to cry. It’s okay to be overwhelmed. It’s okay to scream in anger because this is all just so bloody unfair. Do that and do it often. Do it as much as you feel like you need to. Don’t forget, though, that your child learned to fight because you showed them how to, so you can’t give up now. You can’t give up ever.

This is the sort of game where nobody wins unless they stop fighting. You are exactly the one God knew you would be and you are exactly what and who your child needs to learn these difficult life lessons. But you are not alone. You are never alone. We all suffer in silence with you and we think you are pretty fantastic. You don’t have to conquer the mountain every day. Just take one step at a time until you get to the top. This isn’t a race you have to win. You are concentrating on winning the marathon this time, so that you can move on to the next one. You are in this for the long haul and we are right there beside you.

 

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