April 27, 2015
My name is Mark. I’m 35. I live with three incredible women—a wife and two daughters—and I also live with severe hemophilia A. It wasn’t until recently that I realized living with one has helped me to live better with the others.
Hemophilia has taught me to be a better husband to my wife, Sasha, and a better father to my 2-year-old girls Elliana and Colby, who mean the world to me. They are by far the best part of my life.
Don’t get me wrong: Hemophilia is a difficult disease. It causes severe pain in my joints and muscles. I bleed longer than most people do. And it affects almost all aspects of my life … for better or worse!
But here are some of the lessons hemophilia has taught me:
1. Don’t let physical obstacles slow you down.
With hemophilia, you have target joints—joints that are especially susceptible to painful bleeds. My target joints are both of my elbows and both of my shoulders.
As a result, you learn to do a lot of things one-handed. Opening jars, typing at work, putting on shoes, even getting dressed—all are things you’d find to be difficult with only one arm.
All parents have been there. Right in the middle of making dinner, your child is demanding to be picked up. So you prepare the rest of the meal with one arm.
With twins, I sometimes have to figure out how to make breakfast with no hands. It’s not easy.
I learned to always think a few steps ahead and to use the right tools. As the girls grew to be toddlers, it was helpful to get them involved and helping with the chores. I would play fun games with them like “Who Can Fold Laundry?” or “Egg Whisking Time!”
2. You can get through almost anything if you remember it won’t last forever.
For someone with hemophilia, a bleed can be excruciating. While you never know how long a bleed will last, you do know the bleed and the pain will end at some point.
This is like the phases our kids go through. Like when they refuse to wear shoes. Or insist on wearing a Spider-Man costume, all the time. Or answering all of your questions with “no.” Or potty-training. Or refusing to sleep more than an hour at a time.
We never know how long these things will last.
But we know an end is on its way. And that knowledge, on a bad day, can be comforting.
3. Have plenty of BAND-AIDs® ready.
Hemophilia or not, this is handy advice for every parent. I recommend finding some with your child’s favorite cartoon character, and keeping extra boxes in your cupboard.
A word of wisdom: Never let your supply run out.
4. Smile and laugh, every day, as needed. That’s a necessary prescription for every parent.
The more we smile at our children, especially early on, the more they’ll smile back.
When you have a bad day, or a painful bleed, it can be hard to remember to smile. I have to always check in with myself, so I can still participate in the world around me. It can also be hard to remember to smile when we are stressed out parents.
Smiling is usually a good starting point for any kind of recovery. Whenever I’m with my girls, I try to give them a smile as often as possible.
5. Everything is relative.
As a person living with chronic pain, I had to understand that everyone reacts differently. Particularly when dealing with pain.
This realization has helped me as a father and as a husband. When my wife feels pain, it might not be the same as mine, but her pain is still very real.
The same thing goes when it comes to kids. They will not respond the same way to the same things, even if they’re twins. It doesn’t mean one is overreacting.
Each is having their own experience. You have to address each child individually, knowing that.
6. Persistence is merely applied patience. It will win you almost every battle.
Whether you’re completing a task with a limited range of motion or just trying to hold onto your temper, the smart approach is likely the same.
Stay calm, keep trying and do your best.
As much as I may want to throw my computer’s keyboard out the window when a bleed forces me to type with one hand, I have to stay calm and persist, to get the job done.
This lesson easily transfers to parenting.
When a little one is testing boundaries or fighting your efforts to protect them, it’s so important that you don’t mimic their behavior and flip out.
You have to calmly and persistently show them why they need to do what you’re asking them to.
7. Give your body what it needs.
As a kid, I hid a lot of my bleeds so I wouldn’t have to stop playing and infuse. As a result, my joints are in horrible shape.
Now I am on prophy (prophylactic intravenous infusions, done in advance to prevent bleeds). Some of my joints have even improved a little.
The same thing goes when it comes to what to give our children: Give them what you feel they need. We learned so much when we looked into our options, from breastfeeding, to artificial dyes, to processed foods, to trying to use as many all-natural products we can find and/or afford.
I know what my body needs to stay healthy. Now I have to figure out what their bodies need, and never underestimate the importance of that knowledge.
8. Be an empowered advocate—for yourself and your kids.
Living with hemophilia gave me many opportunities to advocate for myself and our community—from standing up to insurance companies to ensure access to the medications we need, to meeting with Congress about issues people living with chronic illnesses face every day.
To stay healthy, we need to ask questions of our health care providers. We can’t rely on someone else to look out for us. We have to be our own best advocate.
The same is true as a parent. You have to be your child’s own best advocate, too. This also includes doing research on what’s best for our children. New information is always coming out, and it’s important to stay up-to-date.
9. Accept help.
As a person with hemophilia, there are inevitable times when I have accepted help, despite my stubbornness to do everything on my own.
Having kids is very difficult. It is not a one-or even two-person job. If someone offers help in anyway, say, “Yes, please!”
There are no special awards for parents who do not accept help. Help yourself and your children by accepting help from a trusted person in your life.
The lesson is simple: Don’t only accept help. Ask for it.
10. Never take anything for granted.
Parenting is not easy. Not by any means.
We can get frustrated, stressed, angry, disappointed and exhausted. But don’t take for granted all that good stuff in between those feelings.
If you focus on the good stuff, it makes being a parent so much better.
It’s easy to get down when you have hemophilia or any kind of bleeding disorder. Life can be hard. But when I look at the medicine I have access to today, and look at what folks in developing countries go through, or look at what people in much worse situations have to go through, I have to be thankful for what I’ve got.
When I come home and my daughters run around the corner, yelling, “Dada,” and give me big hugs and kisses, my heart melts. I can’t take that for granted. Never.
Mark is the director of marketing at American Homecare Federation (AHF), part of the Diplomat family of companies. He lives with his wife and two daughters in West Suffield, Connecticut.
The information herein may not be construed as medical advice. The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. It should not be used as a substitute for professional diagnosis and treatment. It is best to obtain medical recommendations from your physician.
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