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The Reality of Sending My Child With Leukemia to School

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Sending your kid to school can bring a mix of emotions. From excited to nervous, it can be amazing to see your child getting out into the world and become self-reliant. But it is also hard to put your child in the care of others.

Having a medically fragile child takes those feelings to an extreme level. The thrill of seeing your child go and do things you didn’t know were possible, and that other kids their age are doing, is beyond words. But, the anxiety of putting your child’s fragile care in the hands of others is something some can’t and won’t understand.

So, here are the five things I wish other parents understood about me sending my medically fragile child to school.

1. I am scared to death.

My daughter was diagnosed a little over a year ago with leukemia. She has been in treatment ever since and still has over a year of her treatment left. Since her chemotherapy suppresses her immune system, she is very susceptible to illness. Even the common cold can put her into the hospital and, in the worst case, in very critical condition. Not only can she get sick easily, but she doesn’t look (or sometimes act) the same as other kids.

Her hair is short (because it all fell out with chemo), she has bigger cheeks and a belly because of the steroids that she has to take every month, she has trouble walking and running, and sometimes she has to wear a mask. Sometimes her medicine causes mood swings and she will cry uncontrollably, and sometimes she is mistaken for a boy.

I worry she won’t fit in and that she will realize how different she is from other kids her age, and I won’t be around to help her through it. It’s up to her to explain something that she, herself, doesn’t even fully understand. And it’s scary.

2. I don’t feel bad about asking you to keep your sick kid home.

When kids are sick they should stay home. It isn’t fair to send them to school to possibly get the rest of the class sick. I get that this requires some extra headache on your part. After all, I’m a parent, too. Having to take off work last minute or find someone to watch your sick kid is a pain in the butt.

And maybe they really aren’t that sick and would be able to function for the day. They might be sicker tomorrow and then you will definitely have to stay home (or you might get lucky and they will get better). But, when you send your kid to school for that one day, my kid will probably end up in the hospital for a week and a half. That’s a week and a half that I have to take off work each time someone else sends a sick kid to school. Multiply that by at least 20 kids in the class and… my kid is never in school.

Plus, she isn’t just sick. She is probably in the hospital. And I am sitting in the hospital room wondering if this is going to be the illness that becomes critical and kills my child. So when your children wake up feeling under the weather, please keep them home. Give them some time to get better.

3. I can’t keep my kid home…

… and I shouldn’t have to. Some other parents, feeling inconvenienced by my kid, suggest she stay home and be homeschooled if there are so many risks and worries associated with sending her. I can’t do that. I mean, technically I could — I am a teacher and am fully qualified to do so. But not everyone is. And, I have a job because my family relies on my income to supplement our lives (and I’m not talking about vacations we take, I’m talking about the rent we pay). Plus, my insurance covers me and my kid.

All of that aside, I already kept my child out of school for an entire year during the first and hardest part of her treatment.

My daughter is a social butterfly. She loves friends and all people. To keep her completely isolated for a year was a hard experience for her. She not only missed out on birthday parties, play dates and fun experiences, she also missed out on any sort of social interaction with anyone remotely her age. It isn’t emotionally healthy for her to miss out on another year or more of being exposed to that sort of interaction (or lack thereof).

Chances are good any kid with any sort of medical condition has missed out on opportunities like this. And, some of those conditions last much longer than my daughter’s two and a half years of treatment. So, while sending her to school can be challenging, I hope that we can both agree that all kids deserve to have friends.

4. Get your kids vaccinated.

I get it, we all have different ideas and parenting styles, and there are definitely different opinions out there around vaccinations. It can be a touchy subject, as the differences of opinion are widespread. What can’t be argued, however, is that vaccinations prevent illnesses. Some of them very serious — the ones that elderly people, very young babies and anyone with a serious medical condition could easily die from.

Well, my kid is the latter. Whatever your problem is with vaccines, please don’t tell me my child’s life is less important. Because of her medical condition, I can’t vaccinate her. I completely rely on the people around her to provide the herd immunity that comes from vaccinations.

So please, keep my kid alive, and go get yours a shot.

5. Teach your child about mine.

Teach your child about my child. But not just about my child. Teach your child about differences, about challenges and about compassion. Tell them that different people have different problems, and then normalize it. Remind them they have differences, too. And remind them it is important to have friends and be a friend, because it feels good when we have them.

Don’t shy away from letting your child know the ins and outs of what is going on with mine (and with others). Teach them to ask questions in a straightforward and respectful way. They will be better for it. They can handle it. And my kid won’t feel like they have something to hide or that others see them differently. And neither will the thousands of other “different” people your kid will cross paths with in their lifetime.

Everyone has challenges in their life. We all want our children to succeed, to be happy, to do well. When your kid is struggling in math or has a fight with a friend, you want to do whatever you can to help them. You email the teacher, work with them on homework, hire a tutor and complain about your frustrations to other parents at drop off and pick up. And you should.

Life is hard and frustrating, and there is nothing more frustrating than watching your child struggle and not fully knowing how to help. But please remember that while you are worried about all of those things, I am, too. And I’m also worried about my child’s life and whether or not she will ever be old enough for it to matter that she was ever struggling with math.

Young girl with leukemia outside in field of grass

They say it takes a village to raise a child. Other parents, you are my village. And I don’t just need you to help my child be raised, I need your help to keep her alive and allow her to thrive.

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Thinkstock photo by chronicler101

Originally published: August 11, 2017
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