The One Experience Parents With Ill Children Don't Often Discuss


“Your child is perfectly healthy.”

The only words parents want to hear from their child’s doctor. Words I’ve never heard from a doctor when discussing my oldest son. Instead it was doctor after doctor, seeking a diagnosis, then confirming the diagnosis, and then more doctors figuring out what, if anything could or needed to be done.

Watching your child go through this process, no matter how mild or severe the disorder, can be incredibly depressing. You may be thinking, “Why should I be depressed? My child is the one who is sick, not me. I shouldn’t be depressed.”

But oftentimes, these feelings are difficult to escape. Your small child is facing big issues – issues you’ve never dealt with, issues you wish you could take away from your baby. You feel stranded, stuck, helpless and desperate to take away all the pain they’re feeling or may feel in their life, to prevent the struggles, ridicule and judgment they might experience from their disease. But you can’t. After my oldest son was diagnosed with neurofibromatosis type 1 (NF1) at the age of 3, a chronic, progressive and incurable disorder, I often felt there’s nothing I could do. There was no way to prevent it, no way to cure it and no way to even know how bad it will be.

I felt an incredible amount of guilt being depressed about my son. Yes, he had a diagnosis, but his symptoms thus far have been mild.

So why was I so damn sad?

As far as we know, since there is no family history of NF1, his condition came from a random genetic mutation. I should not have felt like it was my fault, but I did anyway. The ache in my heart, the overwhelming flood of emotion every time I did more research about this, took him to another specialist, or simply thought too much about it, was unbearable.

When I was finally able to accept his diagnosis, I realized what I was feeling was nothing to feel ashamed of and nothing out of the ordinary. Whenever there is something wrong with our children, whether it’s a bad cold or a serious disease, we are going to worry about them. Worry is the often times instinctual, biological need to care for and protect our young. When their health or life is threatened, we’re going to revolt any way we can. And when there is little we can do to help or change our child’s situation, we’re going to feel pain, periods of depression, anger, grief, guilt, you name it. I don’t think it’s avoidable. But while it may not be avoidable, it can be manageable.

So how did I get out of this depressed period and on to acceptance? What’s the “secret?” Sadly, there is no secret. However, it did help me to break life down into the simplest question:

“What do I need to do to be happy?”

And that is the question each person experiencing a depressed period has to figure out for themselves. That’s the hard part. As someone who has dealt with depression most of my life for various reasons, I know that “just be happy” isn’t the answer we’re looking for. Finding the things in life that make you happiest and doing them is a good place to start. And over the years, I did find a few things that really helped me cope as a parent:

Try to stay physically healthy. Exercise and eat nutritious, real food. Get rid of anything processed wherever possible. Junk food, especially sweets, can add to moodiness and decreased motivation. You must take care of yourself so that you can have the energy to take care of your child.

Sleep, not too much and not too little. This is always a challenge for me as depression tends to bring insomnia, but I’ve found making it your highest priority helps the most. It’s more important than cleaning, TV, or even exercise.

Reduce stress any way you can. This is always easier said than done, but you can start by not taking on new responsibilities or extra work. If possible, cut back hours if you’re working overtime.

Make time for yourself. Another one that’s hard to do, but it is possible and important. Take turns with your spouse or a friend watching the kids so you can both get a break.

Meditation. Take 5-10 minutes as many days a week as you can to sit and space out, close your eyes, or lay down and do your best to empty your mind and relax.

Spend quality time with your kid(s). Knowing their life, or quality of life, may be shortened by their disorder makes it that much more important to spend as much time as possible with them right now. You want to be able to feel like you’re doing everything you can to give your child a full and happy life.

Therapy. It’s so great to have a professional to talk to outside of your daily life, someone you don’t have to feel guilty about sharing your problems with. Don’t be afraid to try a few different ones until you find someone you’re comfortable with and someone who has an approach you like.

I know many people prefer to avoid talking or thinking about depression. Mostly that’s what society does too: ignore it, pretend it doesn’t exist, medicate it and move on. But I disagree completely with this approach.

You don’t have to pretend you’re not going through depression to prove how tough you are or because you think experiencing depression makes you less somehow.

You are a worthwhile human being who deserves to be happy. And your child needs you to be strong. Hiding and not properly dealing with it will not make you strong. Your child may have a lifetime of struggles ahead of them and they need a healthy example of how to handle life when it gets them down. You can be that example for them. You have to try your best and never give up, for yourself and your child.

Follow this journey on Mel’s Empty Journal

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.


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