Don’t tell me it’s going to be alright
I am a somewhat happy mother of 2 beautiful children, whom I love most days. I am happily married, again on most days. When I was 7-months pregnant with my second child, I learned that my first child has a rare genetic disease called CACH/VWM, which is a leukodystrophy. There is no cure or treatment. When diagnosed, my child was given 2 years to live. That was 5 years ago.
I have decided to remain anonymous for personal reasons. Mainly, because I worry about my daughter finding out she has a terminal illness. And also, I don’t want to be labelled as a mother with a dying child. I am like anyone else, a mother. As National Caregivers Month draws to a close, I wanted to share my thoughts on what to say—and what not to say—to people who are caring for a child with a life-threatening illness.
Don’t Call Me a Caregiver!
It’s like I am no longer a mother. Calling me a caregiver is like calling a parent a babysitter. We are not employees. We don’t get paid for what we do. We are mothers, fathers, sisters, brothers, wives, husbands…the list goes on. And there are some things that we just don’t want to hear, like:
It could be worse.
Really? How? And while I learned, after being thrown into this world, there is always someone better off than you and there is always someone worse off than you; it still doesn’t make you feel better. So, my life could suck even more than it does. Great.
If you need someone’s shoulder to cry on, I’m here.
I cry every day. I don’t need to cry anymore. What I need is to feel normal. I want my normal life back. I need someone to take me out for a drink. I need to gossip about celebrities and make fun of the girl at the bar with a scrunchie in her hair.
Hasn’t this made you a better person?
You know, I wasn’t a bad person before. I was happy, confident, and funny. Now I’m in a state of disbelief, depressed, and scared of the future. Yes, there is one way that I’m a better person because of this experience. I don’t yell at my husband anymore for not putting the toilet seat down when he is done. But that is about it.
Don’t worry, it will be okay.
No, it won’t. My child is dying, and there is no cure. Don’t tell me it’s going to be alright. Because it’s not going to be alright.
Don’t forget to take time for yourself.
Really? You know I totally forgot. But how is this ever going to be possible? I couldn’t do it before, when my child wasn’t sick. Now it’s something I can’t even imagine. Then again, trying to find time for yourself is something every parent goes through.
What Should You Say?
Is there anything you can say to help someone you know who is caring for a child with a life-threatening illness? Here are some things that made me feel better:
Your child may not have a long life, but you will make sure it’s a happy life.
You are damn right I will. I am going to make sure we have the time of our lives.
Your child will not know pain. The pain will be on you.
There is nothing worse than seeing your child in pain. From day 1 of diagnosis, and I would say from day 1 of your child’s life, any parent worries about whether or not their child will encounter pain. There is a kind of peace in knowing that your child will not have pain and it is you that will have the pain. Because you know you can take it.
Treat us how you used to treat us.
Joke with us. Be mean to us. Talk about frivolous things. Tell us stupid jokes. Be a pain in our ass. Be the same to us as you always have been.