Hemophilia is a journey. An often-rocky, trauma-laden journey. There’s an unpredictable dynamic that transpires from the first moment you hear, “He has hemophilia,” to every step through this complex life. It messes with your brain as much as it does with the body.
Grief & Trauma
I want to talk today about a chronic grief, a trauma that we members of the bleeding disorders community often experience that may seem incredibly odd to others. It’s those instances of deep sadness at times where others think we should be doing a happy dance. It may come at a birthday, when a certain goal is achieved, or even when necessary help has arrived.
Let me explain. Most recently, this type of deep, bone-aching sorrow reared its ugly head when a letter arrived in our mailbox from the Wisconsin Department of Vocational Rehabilitation, also known as DVR. This department assists people with disabilities to achieve their greatest possible potential in the workforce through training, self-advocacy, adaptations, and other empowering services. It is truly one government program that propels people far beyond a victim status to accomplish what they desire in the typical world. One really cool benefit that is provided to those who qualify for DVR services is a potential scholarship to those attending a state university beyond high school. The upside of working with DVR is matchless.
Encounter With Sorrow
My son actually learned of DVR’s opportunities last year, but being the typical high school boy, he never followed through on applying with them for help. After his uncle brought it to our attention this senior year, I finally had to get the ball rolling. Maybe that’s what started my heartache. It so hard for him even to get started. Will he ever be able to do this sort of thing on his own? The emotional weight of this is something his anxiety has not yet been able to push past. My angst arose from its long, enjoyable nap.
I was truly surprised to see his hemophilia listed as one of the qualifying disabilities on DVR’s list. My online application resulted in a call which then resulted in an appointment. We sat down with the area rehabilitation counselor for the initial interview at my son’s high school. As he talked us through their services, purpose, and process, it sounded more hopeful that my son might qualify. After the initial application, I received an extended phone call that lasted about 30 minutes, my son also joining in the conversation. I was tearful as the absolutely kind woman on the other end of the phone explained to me how the DVR services might help my son with his goal to find employment and stay employed as he steps towards adulthood. We discussed self-advocacy and sadly, ways to stop workplace discrimination, which his father has endured because of our son’s hemophilia.
Then the letter came this week. He qualified under their “Category 2” for DVR services. His next step will be to sit down with the wonderful counselor we first met and set up a number of goals with him. So why did it feel like I had been punched in the gut?
This occasion felt like so many other. Emotions creep out of nowhere, carrying with them dread and heaviness. They are little jabs, little reminders that nothing is just quite typical. Nothing will ever be simple. Adversity lies ahead. There will be many more hoops to jump through. Life will always be a fight.
I recall having this feeling when our boy was only 3 months old. In order to qualify for extended COBRA carryover on the health insurance provided by my husband’s former employer, the Social Security Administration would have to deem my son disabled according to their guidelines. We desperately needed the insurance to cover his expensive hemophilia treatment. Medical bills were steep, and that was when his clotting factor only cost us $1,000 per month. Nevertheless, having that label slapped on him by a government bureaucracy was a heavy wound. There would be much more adversity ahead.
Other crossroads bring reminders. Certain birthdays, getting braces, becoming a new driver, and even semi-annual hematology appointments all bring me face-to-face with this continuing challenge.
I am not complaining. Just trying to process the heavy, unwelcome grief that suddenly appears once again. The sorrow of knowing I genetically passed this challenge on to a person I love so fiercely is painful. My heart’s desire is that he would have a bright, thriving, limitless future. I want him to launch into adulthood with everything he needs to succeed. He likely will, thank God! Living in America he has more treatments and opportunities than ever. Yet, there’s always this dread that I pray is never validated.