Tuesday, January 29, 2013

JA Guilt

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.
Em is saying, "I don't have (active) arthritis!"

10 comments:

  1. Thank you for writing this. I am a fully grown woman with JRA, specifically polyarticular juvenile rheumatoid arthritis, or idiopathic or just JA. There are now so many terms flying out there. Please do not ever feel guilty about medicating your daughter. I know the meds are scary, but I'm sure they're helpful, or else she wouldn't still be taking them. I also have a child who requires medication, though not for JRA. They started running tests on me when I was 4 (that was 33 years ago) At that time there was asprin, prednisone and Gold shots available for kids. Methotrexate started being used for kids when I was about 10. I got that (and included in a few research studies). With all that, I ended up not walking for nearly two years. I also ended up with lots of deformities. I know in my heard if meds like enbrel, humira and the like were available then, I wouldn't have the problems I have now. So try not to feel guilty (though, as a mom, I know that's next to impossible). You're doing great!

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  2. Exactly the feelings I have with my daughter. She had her first flare when she was 6 months old, right after I stopped breastfeeding. I couldnt help but thing "If I hadnt stopped breastfeeding this wouldnt be happening" Or wondering what I did wrong during pregnancy or did I eat something that harmed her. Thank you for sharing this showing us that we are not alone!

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  3. Thank you so much for this post. You hit so many nails on the head. I hate this disease so much but I'm so grateful for people like you who are real and honest because you help me see that when I feel the way I do I'm not alone. Blessings to you!
    ~Ashley
    www.momma-on-a-mission.com

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  4. Thank you so very, very much for this post. These are also the same feelings I have/had with my daughter. A lot of people don't talk about all the "guilts" out there....but they are there. I have experienced everyone one of those "guilts" you mentioned. Thank you for sharing your heart and for being "real" in your writings. I will pray for your daughter and your family.

    Dana
    www.weshallovercome1215@blogspot.com

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  5. Wow... so very well written. Just like the stages of grief in coming to terms with a diagnosis, you have captured the stages of guilt. I recognize them all... and like you, am now dealing with remission guilt. But the very fact that you demonstrate such empathy, understanding and courage shows that your heart is, and forever will be, with all of the JA parents, no matter what stage of the disease. Because even when it seems to have gone away, it never really has.
    Beautifully written... Thank you. My best hopes for continued health for your daughter and family.. and a wish little peace to squelch and stifle the guilt for all of us - as we just try to do what is best for our kids!
    Colleen
    www.jiamom.wordpress.com

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  6. Thank you so much for saying everything I haven't been able to say. It just couldn't find the right words or the right way to say them. You have expressed what I have been feeling. I am going to share this on my blog :)

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  7. I'm going out on a limb and assuming you are LDS. I am too and feel guilty because I can't explain why my daughter hasn't been healed. Even family bring it up and I asked them not to talk about others being healed around her because I don't want her to feel like she has done something to deserve this, she is only 6. I can't fully explain to her why some receive blessings of healing and yet when she gets them she is never offered healing or recovery. That is my struggle, sometimes I want to look up and yell where is my Ems miracle? Because everyone else seems to get them. I wonder if it's my faith lacking or something wrong I am doing. I don't know if you ever wondered this, but I thought you might understand.

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    1. AJ, I am LDS and I understand what you mean. Sometimes I wonder why Heavenly Father allows little ones to suffer, but I always step back and remember that He sees and knows so much more than we do. It has nothing to do with your faith or lack thereof. Everyone has trials in this life, this illness is our trial. It is all part of the plan to help us grow and become something greater than we can even imagine. Hang in there.

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  8. My daughter was just diagnosed with JIA 7 months ago and it has kind of rocked my world. She was only 21 months old. One of the things I have struggled the most with is the feeling that no one understands what I am feeling and that my feelings aren't justified because it could be way worse...because it's "just arthritis". I cannot tell you how much I appreciate this post you wrote. I was in search of finding people who are experiencing this same thing and this post was exactly what I needed to read. I have experienced all of those exact same feelings and it is comforting to know I am not alone. I know this was written over a year ago, but I hope your family is doing great and I just wanted to say thanks:)

    -Marie

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    1. Marie, I'm glad you found me! I can hook you up with a facebook group of fellow JA families, if you're interested. JA is rough, it changes everything, and it's hard when you feel all alone. Feel free to email me, sdhackett(at)gmail.com

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