Sunday, October 28, 2018

Invisibility, Not the Easy Way


I loved watching the Harry Potter movies with my sons, especially the earlier ones where Harry, Ron, and Hermione were much younger. The magic and wonder of wizards and Quidditch were fun to imagine. I especially liked Harry’s invisibility cloak. “Mom,” my son said, “wouldn’t that be cool?” I immediately answered, “Yes, it would be cool.” But sometimes being “invisible” is not beneficial.
In the bleeding disorder community, there was a time when having hemophilia was an obvious, physical limitation for many. Damaged joints caused people to limp and often rely on walkers, crutches, and wheelchairs. Joints that bled numerous times would never be the same in function or appearance. It was obvious that something inhibited the person from being mobile. There was never doubt that the individual had a physical impairment.
Fast forward to 2018, and many with hemophilia are living lives the older generations could only dream of. Factor products are much safer and more effective, which leads to less bleeding and joint damage. Many with hemophilia play basketball and soccer with ease (and continued precaution). And the “hemo swagger” of the past? Many never experience it. Yes, this is fantastic. However, when our community fights for insurance coverage, choice of factor products, funding for hemophilia treatment centers, and even 504 plans in our schools, the unaffected world does not see an impairment.
The uneducated world sees a little child playing and running with ease. What they do not see is the port in their chest or the needle marks at the sites of regular infusions. They do not see how a child must learn to accept needle pokes as a way of life. And they surely do not understand how a 12-year-old boy can have arthritis.
My 12-year-old has arthritis and the “hemo swagger,” neither of which are always easily seen by those who do not know his hemophilia experience. When he suffered from constant bleeds and could still walk, we would park in an accessible spot at the store. The stares and comments from onlookers were horrific. They had no idea that my son suffered more than they probably would in a lifetime.
We no longer need the handicapped placard, but there are hundreds of thousands of people who do need that placard. On the outside, they are seen as physically able, but before you judge them, stop for a moment and consider that they may be fighting a battle you could never comprehend.
Invisible Disabilities Week is Oct. 14-20. Rather than judging someone as they leave their car in the accessible parking spot, take a moment to give thanks for your health. You may need that spot one day, and you will hope that those walking past will not be filled with judgment, but with kindness.
post signature

Chronic Illness and Depression Often Go Hand in Hand


I have suffered from clinical depression most of my life. Five weeks after my eldest son was born over 22 years ago and diagnosed with hemophilia, my mom passed away. It was not a good time. I had planned on taking maternity leave until after Labor Day, but after Mom’s death, I knew I had to go back to teaching as soon as possible. It was those events that launched my depression into a new realm. However, once I saw a psychiatrist and a therapist, things were much better.
After my second son was born 10 years later, I experienced a terrifying condition: postpartum depression. If you ever hear of someone suffering from postpartum depression, please do not ignore it. It is hard to understand if you have not experienced it, but it is real and frightening. Fortunately, I had the help I needed, and after several months the depression lifted. But it was time stolen away from me and my mighty warrior.
Over the years of suffering from depression, I also developed anxiety, which is also another condition that is hard to understand. I get it. My mom suffered from depression and anxiety, but in her day, it was not discussed or even given a diagnosis. I wish I had known then what I know now about anxiety and depression.
Many people in our bleeding disorder community suffer from mental health issues. Depression and chronic illness go hand in hand for many of us. The pain and suffering caused by a bleeding disorder (or any chronic illness) can sometimes be too much to bear. One of the giants in our community, Barry Haarde, lived with depression. He rode his bike around the country raising money for Save One Life. And even his closest friends had no idea how deep his depression went into his soul. He ended his life earlier this year with many left behind wondering why. “What could I have done? How did I not know?”
Sometimes it is hard to know if someone is suffering. Many of us function beautifully, we have a smile on our faces when we’re with others, and the minute we are alone, or in the comfort of our homes, the weight of the depression takes over. It looks different in everyone, and when you are especially close to someone it can be difficult to see.
If you have a problem, find someone close to you and have a conversation. It is amazing how confiding in a good friend can help your spirit. Maybe you are the person who is being present and listening. Open your ears and your heart to truly “hear” a friend in need.
If you need help from a medical professional and aren’t sure where to begin, talk to your Hemophilia Treatment Center. They will help refer you to a mental health professional.
It’s not anything to be ashamed about. Reach out. It could be a life-changing moment.
If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.
post signature

Lessons Learned, the Hard Way


Wash your hair. Brush your teeth. Please, for the sake of the world, put on deodorant!
Hundreds of times I have given those commands to my sons. Well, not so much “commands” as directives. I know I taught them basic hygiene at a young age, but why is it they insist on not complying? Is it a boy thing? I would never have dreamed of not wearing deodorant or not brushing my teeth before leaving the house. I think it’s simply because they can, and they know it will drive me nuts. At least my 22-year-old is past the “stinky” stage.
One son (who shall remain nameless) went to a recent dentist appointment and was shocked by the findings. “I didn’t know flossing was such a big thing,” he said. Yes, I wanted to do the “I told you so” dance, but I had to keep my anger in check. It’s one of those lessons that need to be learned the hard way. Yes, there is still hope, and their teeth are not exactly rotting out of their heads, but I get so frustrated. So many times I have said, “Son, you don’t want to have dental problems with your hemophilia. It’s just not worth it.” But my words have fallen on deaf ears.
The crazy part of this is that I immediately blame myself. Maybe I didn’t teach the importance of dental care the way I thought I had? Did I nag too much? What could I have done differently? I’ll go crazy with those questions and need to let them go, but I still feel like a failure as a mother.
Don’t we do that too often? If our children are not performing to a high standard and struggle with math, or are not athletically gifted, or don’t have college offers to pick from before their senior year in high school, then point the finger at me. I have failed.
I was a straight-A student, always turned my work in on time (if not early), and excelled in school. My husband was the same. I always expected my sons to have the same standards. But it doesn’t always happen that way.
I wanted for both of my boys to enjoy school and thrive, and at times they do, but there is an important lesson I have learned: My journey and theirs are completely different. I did not have a severe, chronic illness with which to contend. Not to excuse things, but they have each had significant struggles due to hemophilia, which affected their schooling.
My kids are in good places right now, and I do not take anything for granted. Their hemophilia is managed well with no significant bleeding episodes, they are both in school, and life is good.
I invite each day as a fresh start. As long as I have breath, I will do everything possible to help my sons succeed. There will be more bumps along the way, that is for sure. Right now, I give thanks for this season. My family is in a place that fills our needs. We are happy.
I think a cavity or two can be handled.
post signature

Monday, August 27, 2018

What Is a 504 Plan and Why Do I Need It?


Special education. Those two words strike fear into the hearts of many parents. “But my son doesn’t need special ed!” I know, because I was one of those moms.
When my oldest son Julian, now 22, was in elementary school, the idea of a 504 plan — based on a federal law requiring students with disabilities to have access to educational resources — was brought up. I was incensed when I saw that hemophilia was listed under special education. Julian’s hemophilia was never a big issue. It still is not. He didn’t need a 504 plan, and he never wore a helmet. He was fortunate. But when my mighty warrior Caeleb came onto the scene, I saw things in a much different light.
To read the rest of the article, click here.
post signature

Monday, June 11, 2018

Showing Appriciation for the People Behind the Scenes


I am a musician who has played in orchestra pits, wind ensembles, chamber groups, and orchestras. I even played antiphonal oboe one Christmas! Music is powerful. It transforms you and allows you to escape for a few hours from the regular happenings of the day.
However, most people don’t realize the work that goes on behind the scenes to produce a performance. Those people you never see set up chairs, create the programs, find advertisers, sew costumes, and run sound and lighting. Someone is always working quietly in the background for the greater good.
To read the rest of the column, click here.
post signature