One of the biggest milestones of most parents’ lives is their child’s first day of Kindergarten.
As a parent of a child with cancer, this milestone was not promised to me. In fact, this was almost a “never going to be” for me. Unfortunately, it is a “never going to be” for many parents. Because instead of picking out first day of school outfits and packing lunch boxes, they’ll be picking out the outfit their child will be buried in. Or the coffin that will hold their child’s remains, or the urn which will sit on their mantle.
But let’s not talk about that, because this post is about me and Cayla. And Cayla was lucky. She’s not going to be an urn on my mantle or just a picture I keep constantly at my side. She is going to go to Kindergarten! It hasn’t happened yet (Tuesday!), but already I’m terrified; I’m excited, and I’m scared.
Oh this is normal, you might say. Every parent feels this way. And of course you do. Your baby is going off to school. It’s a huge step!
But things are a little different for me and Cayla. Yes, she is in maintenance, but Cayla is still receiving treatments. She can still catch anything that comes her way.
Case in point, Cayla caught Chicken Pox about a month ago. We’ll probably never know how or where, and it’s completely ridiculous. Who catches Chicken Pox these days? Oh, Chicken Pox isn’t bad, you might say. It’s a normal childhood illness. No big deal, right?
Not for a child with cancer. Chicken Pox put Cayla in the hospital.
See, any child whose immune system is suppressed can catch chicken pox. Or whooping cough. Or scarlet fever. Or any of the numerous diseases we vaccinate our children against. Guess what any of those can turn dangerous very quickly for them.
I don’t believe I have the right to tell someone what to do with their child. What I can tell you is that your refusal to vaccinate your child most likely won’t harm them, but it can kill mine. Your child has a functioning immune system that should be able and efficent at fighting off anything that comes their way. Cayla? Not so much.
So imagine my child – whose immune system is broken enough that she caught chicken pox, a virus that is all but eradicated – and imagine her all dressed up and excited with her Sophia the First backpack and Super Girl lunch box, walking into her first day of Kindergarten. Walking in to that melting pot of kids and germs.
School is a petri dish of funk, crud and illness. A child with a normally functioning immune system has a good chance of getting sick. My daughter will get sick.
I should be super excited for my daughter. I shouldn’t have to worry if you’ll send your kid to school with a fever after giving him Tylenol, when really he has strep throat. I shouldn’t have to worry about you sending your child to school, telling her she only has a cold when it’s actually the flu. But I do.
I worry if this is going to put Cayla in the hospital again. I wonder how much time will she actually spend in school this year? Will that cough that you didn’t think was a big deal for your child lead to pneumonia for mine?
But it’s not just the germs that make me nervous. It’s all the dirty things too, that from no fault of any child, are just dirty. They are just kids; things get dirty, so I can’t help that.
I also have to worry about the fact that Cayla has a med port. This device was surgically inserted into her chest and runs a catheter right up to her heart. It’s how she receives all her chemo, blood transfusions, IV fluids, etc. So you can imagine how careful we have to be about it getting bumped.
This means Cayla won’t be able to play tag, or anything in P.E. that can cause her to fall and get hurt. It means she won’t be able to play on certain playground equipment, like a jungle gym, or even climb up on a play set without a teacher right there to watch her.
But it’s not just about the things she’ll be missing out on or the things that could happen to her that scare me. It’s also about the things she could do to others.
Every single month for one week, Cayla is on steroids. They give her mood swings that she can’t control, erratic behavior, extreme irritability, hunger, and plethora of other things. There was that incident in preschool where she bit another child for calling her “underwear”. Or the time where she pushed a girl out of a chair because she felt like it. Or yet another week where she burst into tears and cried for two hours for no reason she could tell.
So yes, I’m scared how my child, who doesn’t know how to handle these crazy mood swings, will react to other children she’s never met.
How do I apologize sincerely enough to you and your child if she lashes out at them? How do I apologize to the teachers when she’s having a tantrum in the middle of the floor disrupting everything, because she’s having a muscle ache? How do I apologize to the nurse who will have to deal with her being cranky while trying to get her to nap?
And these are just three areas that plague me. Of course mixed into all that are also the normal questions every parent has, like I wonder if she’ll like it? Will she make friends? Will she excel or will she need special help? But for me, and other parents of children with cancer, we worry about so much more. We aren’t just nervous and excited for our children during this huge milestone in their lives. We’re worried about their health and if this big step will end up being what puts them in the hospital again, or worse.
So while your nervous and excited about your child’s first day of school, please remember there’s also other parents, like me, who are nervous and excited… and afraid.