My daughter and I have been having a series difficult conversations.
Most parents have difficult conversations with their teens. Yes. I am talking about those uncomfortable, but necessary talks about sex, drinking vaping, drugs, driving, money, college prep and our hopes for their future.
Our conversations are similar, but different. And some are not the typical conversations that most parents have with their children.
Driving – Naturally, my daughter was excited about getting her driver’s permit and was eager to sign up for driver’s ed with her friends. She was looking forward to the laughs, bonding and learning how to drive with her friends. But her joy quickly changed to hurt and then anger when she and I spoke about the dangers of driving with her condition.
The pain she experiences from her condition affects her right leg. If she is having a painful day, she may not be able apply proper pressure on the brake. She could possibly endanger herself and others. She will likely need adaptive driving equipment, such as hand controls for the accelerator or braking systems. She will need to learn how to properly use the equipment from a certified adaptive driving instructor (that person needs to have 2 certifications, one certification to drive an adapted vehicle, and the other to be certified to teach using adaptive equipment) . The driver’s ed program in our district does not have certified adaptive driving instructors to provide driver’s education with adaptive driving equipment. This conversation left us both sad, frustrated and in tears. Once again, she is being robbed. She is missing out on the experience of enjoying a right of passage with her friends.
Sports – My daughter loves her sports. She had to give up playing traditional stand up sports. We were lucky enough to have friends who introduced us to adaptive sports.
Adaptive sports, also called disabled sports or parasports, are sports played by people with a disability, including physical and intellectual disabilities. Many adaptive sports are based on existing able bodied sports, and are modified to meet the needs of persons with a disability.
My girl was able to get her adrenaline rush and keep her competitive juices flowing. But these last 2 seasons were painful seasons. She was not able to participate due to being in too much pain.
She and I, very reluctantly, contacted the manager of the team and sadly withdrew her from the team. It was another heartbreaking moment for the both of us. I love to see the look of determination when she is competing. It never lets me forget how strong of a fighter, woman and person she is. I love the friends we have made with other families who participate in these sports. My daughter does not want to give up playing sports, but the pain she endures is too great. Yet again she is forced to give up doing what she loves because her body cannot keep up with the demands.
Drugs (sort of) – For over a year now she has been taking medications that do terrible things when you don’t take them religiously. She has learned the how horrible and painful the effects can be on her body if she forgets to take her medication. So this is one of those times where, as a parent, am a pill pusher. And I have found myself in a situation where I have (surprisingly) strong opinions about the benefits of medical marijuana.
On the topic of drugs, I re-opened the discussion about the conversation I had with her surgeon. My daughter has not been completely in the dark about her condition. We have had ongoing conversations about FAVA (fiber adipose vascular anomaly) since her surgeon first told us about it last year.
We Googled our asses off and tried to learn about it, but since FAVA is so rare, and since it is a fairly, newly discovered diagnosis, the information is sparse, especially when you don’t have a medical degree.
She knows that her condition is rare and that there are limited treatment options. She also knows that pain is, and will continue to be her constant companion. So she was not surprised to terribly upset when I related my conversation with her surgeon. Was she disappointed? For sure.
Her future – My warrior is very optimistic! She is sure that modern medicine will continue to evolve and someone, out there, will come up with something to help treat this condition. And she is considering pursuing an occupation in the sciences to help further the development of new treatments.
I too want a treatment found. I will keep knocking on doors and I will never stop trying to help her. But my mommy heart and brain worry about the process it takes to find the golden ticket.
There will be clinical trial studies; and placebo test groups; and success stories and less than success stories. And while we will celebrate the success stories, there will be many more stories of cases where symptoms get worse after treatment. And my heart goes out to those brave individuals who will be willing to take the risk, in the name of science, in the name of hoping to help others. I pray for many more successes than failures.