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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Wednesday, January 19, 2011

It's A Family Affair

Life with chronic illness really is a family affair. Those of you living it likely already know this. Or, if you are new to chronic illness then maybe you aren't "there" yet. And, if you are the fortunate one not touched by chronic illness at all in your own family then pay attention :)
Two and a half years ago when Bean was diagnosed with JA and then with Uveitis we had no idea the impact it would have on our family. We just thought, "Okay, so she's got this thing, she'll take meds, it will go away and maybe come back, no big." HA! Can you say blind? First of all, it doesn't always go away. I have recently "met" some teenagers on Facebook with JA. They have had it since they were little tots and have never made it into remission. Dang. Second, yes, it is possible to end up in remission, but with so many kids, it just comes back a couple years later. So, guess what happens once that kid hits remission? The parents sit and wait. Wouldn't it be great to be able to just shout from the rooftops that "it's" gone and then go about leading a normal life? Not gonna happen. Heck, even while in "medicated remission" the parent sits and waits for the proverbial "other shoe" to drop. You see that is the other scenario that often times plays out. The child gets into a "medicated remission". That is when they are currently on meds but symptom free. Typically what happens is that after 2 years of being on meds without symptoms of the disease, the doctor will start weaning the meds with the goal of coming off completely and not having the symptoms return. But, sometimes while in that medicated remission the current med stops working. What?! Yes, it just stops working. Then you go back to the drawing board and start all over with yet another med. It's exhausting, frustrating and frightening to think about all this. Then there is when something new pops up and it gets you thinking, "What now??". A parent of a "normal, healthy" child likely doesn't panic over every headache, stomach ache, fever, rash, ache, pain, limp, ANYTHING out of the ordinary. I know I never did. And that worry isn't just limited to the child that has the diagnosis either. With a hereditary disease you have to worry about ALL of your children. I have 2 other children that could, potentially at any time develop JA and Uveitis just like their baby sister.
That's part of how it's a family affair. The parents never feeling like their minds can rest. Then there are the siblings. Another JA Mommy blogged last night about how chronic illness affects their family. One BIG way it has is this. "It broke my heart today when Matty got sad and upset because we can't sign him up for baseball this Spring. He looked at me and said "If you and Jordan weren't sick I could play." And the thing is, he's right." I can't tell you how many times we have had similar things happen in our own house. "Can we go to the park today?" No, your sister needs to rest. "Can we go to the mall today?" No I'm sorry, you're sister can't walk that much. The list goes on and on. It's ridiculous the things that we keep our other kids from doing because their sister is sick. Another Mom recently blogged about a photo that her oldest daughter had found of her baby sister from earlier in the year. "A few nights ago, my oldest daughter found a picture of Emily that I had put in the scanner. It was from the last year around this time. She has a cute little smile, and she looks happy and well. Gir stood looking at this pic for a while, and then says "It's so sad but I forgot what she used to look like". We all had like a moment of silence. It's so hard to get used to this being her. " Then there is shot night. My oldest daughter can't even be in the same room when Bean gets her shots. I have asked her to please come sit and hold her sisters hand. Let her know that you are here. Tell her it will all be okay. She just can't do it. I don't know what part of that breaks my heart more. My son on the other hand can typically stay nearby for shots. Many times he has gone to his room and come back with his blankey and favorite stuffy from when he was a baby. He gives it to her to comfort her. Two weeks ago, her Humira shot was so not going well. It was a really ugly fight. I looked up just in time to see him run from the room. *sigh* I hate that. I hate what it does to my other two kids.
Of course, let's not forget the strain on the parents marriage. I used to hear about families facing tragedy that crumbled and fell apart and never understood it. Why would they not form a closer bond and help each other through. I still don't really know why but I have an inside look now. It is really hard on a marriage having to deal with a chronically ill child.
I just re read this and I'm thinking to myself, "I don't want this to BE our lives!" I don't want us to be defined by the disease. Yet how do we not? It is part of our EVERY day. I would love to pretend that it isn't there but I can't. Maybe there is a balance to be found.


Courtney said...

Jackson is currently one those symptom free kids that's still on all his meds. Good times I tell ya. :/ Thank you for posting this.

Amy Cunningham said...

Oh Courtney, I pray e.v.e.r.y.d.a.y for these kids!!! The ones like Jackson, the ones like Emily, the ones like my Bean, then there is Jake that is SO close to another full remission. All in different stages of this journey and all in need of prayer.

Angela said...

Thank you sooooooooooooo much for this post. Living with chronic illnesses is so hard. It's hard not being able to do the things with the other kids, because the other one is sick, hurting, getting ready for surgery, etc etc etc. I too think about how I don't want it to define us or him, but in reality my son's medical issues ARE a part of him. Thank you for the post.

Amy Cunningham said...

Aw thank you Angela!! You know, when I write these posts I always think they are mostly going to be for me. To vent or sort my thoughts in my head. I can't tell you how happy it makes me to know that it helps others. And you are right. As much as we don't want it to define them, it IS at least a part of them. Finding balance must be the key!

Deetipton said...

Omgosh, Amy. I could have written this. I know... it all just plain sucks. Em's health is literally on my mind every waking moment, and I think an awful lot about all of our other kids, too. It always seems like it's never *just* arthritis. It's always the hell or arthritis and then something else pops up, & maybe something else.

I had tears reading about Jenna's shot nights. Ashley leaves the room, too. Zach used to always try to comfort her, though she doesn't need it anymore. How sweet that your little man loves her so much! (Again, the beauty in the breaking...) LOVE your posts.

Amy Cunningham said...

It's so hard sitting back and watching, really SEEING how sickness affects the entire family. And all in their own ways. The good part of all of this though, is that it gives us all a gift too. It teaches us all something that we wouldn't otherwise have known. Yes, the "beauty of the breaking" :)