I’m only speaking for my family, here, but I’m pretty sure these sentiments are shared by most parents of children with health issues or chronic illness. I know they’re real for JA families.
“Who Done It” Guilt
When I first found out that my sweet child is ill with some disease no one has ever heard of, the burning question was, “Why?” Why my baby? Why now? Why? Why? Why? Yet no one had an answer. There is no obvious reason for the pain and suffering that my child had to endure.
That was not acceptable to a parent’s ears – there must be some reason.
In comes the guilt. It must be my fault. I provided half of her genetic make up, carried her in my womb for nine months, I breastfed her, chose her food from the store. It must be my fault. Logical or not, I went through this guilt. Thankfully, I moved beyond it, but it’s a very real feeling for a parent reeling after a scary diagnosis.
“To Medicate or Not” Guilt
After a diagnosis of Juvenile Arthritis, the next step is to come up with a treatment plan. The medication out there for this disease is scary. Chemo therapy drugs, immune suppressants, steroids. These meds have a variety of terrifying side-effects on their own, plus they make kids more susceptible to infection. What if my baby develops cancer because I chose to give her these drugs? What if she becomes sterile and can’t have children of her own? What if she gets a rare infectious disease and we end up in the hospital?
With each new medication, the same fears resurface. The same questions. The same guilt.
Of course, the alternative is not to medicate. Then, the poor kid could end up unable to walk, tie her shoes, or hold a pencil. How long before she will need surgery to replace a knee or hip? How long will she be able to endure the chronic pain?
“Administering Meds” Guilt
Real life, every day, making my child swallow down the medication that will ease her pain while threatening her liver. Maybe I’m lucky and she takes it like a champ. Maybe she thinks it’s gross and fights day after day.
Real life, every week, giving my child injections of medications that will decrease her inflammation and enable her to walk, but put her at higher risks for organ damage and infection. Maybe she screams and cries and my husband has to hold her down. Maybe she sits still and is proud of herself for being brave. But she’s only two years old and shouldn’t have to be brave.
Guilt. Guilt. Guilt.
“My Baby Is Sick” Guilt
Emma woke up with a cough Sunday morning. I kept her home from church and took her temperature multiples times. When it was time for meds I had to decide if I should give them or not. She didn’t really have a fever, so she got her injections as usual. Later that night her cold got worse and the fever came. Is this just the natural progression of this virus, or is it worse because I gave her those immune suppressing drugs when I should have held them for the week?
Every time my kid catches a cold, flu, or bizarre viral rash, I think to myself, “Maybe this infection/cough/fever wouldn’t be so severe if I had just skipped her dose this week.”
We’re lucky. Emma has had some yucky bugs since starting JA medication, but she’s managed to stay out of the hospital and overall remains in really good health. Which leads me too my last category…
“My Baby Is Doing So Well!” Guilt
AKA “Remission” Guilt
At the beginning of this journey, I felt alone. My family was completely isolated with only this horrible disease and terrifying decisions of an unknown future before us. So we reached out. I made friends with other JA families. They have been a huge source of strength, love, and support to me.
In getting to know other parents of JA kids, I have come to realize that we are blessed. Emma’s JA affected less than ten joints. Her eyes and internal organs have been spared so far. She was diagnosed quickly and began treatment right away. She responded beautifully to her medication and hasn’t had a new flare since the initial onset of this disease. We haven’t seen any active arthritis in an entire year! She is in medicated remission! This is wonderful!
Yet I feel guilty.
I feel guilty that she is doing so well when some of my friends’ children suffer endlessly, are in and out of hospitals, and get a seemingly endless amount of bad news from doctors. Why can’t they have the same success that we have been able to enjoy?
These feelings of guilt come and go. Come and go.
But JA never goes away.
Sarah is the mother of a three-year-old who was diagnosed with juvenile arthritis at fifteen months old. Sarah blogs here