This is a very personal blog post about my own experience dealing with a rare disease in a loved one. As I’ve mentioned on a recent facebook post, twelve years ago, my then 15 year old daughter was diagnosed with scleroderma. I could only blink when the specialist delivered the news as I’d never heard the word before. I had to ask her to repeat it and write it out for me.
At the time, we had no idea what type of scleroderma my daughter would develop, only that it was very unusual for someone her age to have it. Though it’s more common for women to develop scleroderma, onset usually falls between the ages of 35 and 50.
If you’ve been following me for a while, you’ll know that I rarely post about this struggle, only on occasion, and I feel the nudge to do it again now. I want to respect my daughter’s privacy, so I’m going to try to express how this has impacted me, because as I’ve told her many times, “This isn’t just happening to you. It’s happening to me. It’s happening to all of us who love you.”
Anyone who’s watched a child suffer, (adult or not), and can do nothing to stop it, knows that particular heartache of helplessness. I also want to state that I know that there are many people who have it worse—a child who is sicker, or who has died. There is always someone who has it worse. If this is you, know that my heart goes out to you and I pray comfort and hope will come your way.
So, what is Scleroderma exactly?
In a nutshell, Scleroderma results from an overproduction and accumulation of collagen in body tissues. Collagen is a fibrous type of protein that makes up your body's connective tissues, including your skin.(https://www.mayoclinic.org/diseases-conditions/scleroderma/symptoms-causes/syc-20351952)
Anyone can get it. It’s not contagious. It’s not curable. But there are treatments that help hold back the rate of progression and make the symptoms easier to live with. I’m thankful for modern medicine.
If not for modern medicine, my daughter would be in far worse condition.
Let me shout this out: I’M SO THANKFUL FOR MODERN MEDICINE.
What has been so hard for me as a mother?
It’s hard to watch my ballerina, my beautiful dancer, lose her ability to dance. It’s hard to see her joints stiffen, and her knuckles, elbows and fingertip become covered in painful ulcers. It breaks my heart that she can’t hike with her friends because she only has 50% lung capacity, or that she has to sleep so much.
It’s hard for me to see all the medication she has to take every day. Serious meds. And that she has to have chemical infusions twice a year, two sessions two weeks apart for five hours at a time.
It’s hard for me to see her life’s potential taken from her, to see how she’s missing out on a “normal” life. She’s very intelligent, very talented, witty, and loving, and I want her to have every advantage and opportunity, like any parent does.
It’s hard for me because she’s an adult and she desires autonomy, and doesn’t want to necessarily share her physical or emotional struggles with me. She’s capable of driving five hours to a hospital in Vancouver to have a day procedure where they insert a catheter into her heart to test for pulmonary hypertension, without my help. I have to respect her space, but to me, she’s still my little girl and I want to do all the HARD things for her.
HOWEVER, it’s not all hard. My daughter has a beautiful SOUL, so much more important than a body that’s not functioning properly, and also everlasting. She’s got such a sweet and positive attitude, and quietly takes her punches. Other people, unless they look very closely, would never guess she’s fighting this battle daily. She has a science degree and is attending art school. She works in an optometrist office. She has many friends who love her, not to mention a family who adores her. She has a good sense of humor, which as they say, “doth good like a medicine.” I'm so incredibly proud of her.
There really is much to look forward to.
Because of modern medicine and the prayers of those who believe in the power of prayer.
I believe in both.
Which is why I’m vaccinated. I’m vaccinated, not only to protect myself, but to protect my daughter. I’m double vaccinated and if I need a booster, I’ll get that too. Every year, if necessary.
I know people have vaccination hesitation for different reasons, but my appeal is that you would consider people like my daughter, who would have a very difficult time beating covid if they got it. Do it for yourself and do it for them.
Love Thy Neighbor. Get Vaccinated.
And if you can, please donate for scleroderma research. Every little bit helps.
Whew. Next time I’ll go back to posting about light and happy things like our first RV trip adventures, and of course, book news!