I guess in the last few days I've realized one good thing, my adrenal glands seem to be pumping out the stress doses of cortisol. I haven't had to bump my steroid dose once during a huge amount of stress. There's the good news...
Here's the rest...emotionally I am a mess. I feel guilty for having a child when I knew autoimmune arthritis runs in my family, I feel selfish that my daughter may be in pain for the rest of her life because of me and when I think of both of these feelings they are too big for my mind to handle so I just back right up into denial where I've been hanging out for the last few days.
I married the hubs at 25 and he immediately started to talk about having kids, I was not at all sold but by the time I turned 29, I figured that I better start thinking about it because I was getting old and kids really were a must for my husband. When we finally started to try, surprise,
I was infertile (which is not unusual for women with RA). It took us 18 months of testing, trying, a lot of medical intervention before I became pregnant with my daughter, ironically on an off cycle while we were waiting for our first round of IVF (I'm very glad we didn't have to go that route).
We comforted ourselves with the fact that the meds were so much better that even if our child had JA, it was the "best" time to have it (oh yeah, we had it bad). What we didn't know at that point was the med that had me in remission for 4 years was going to quit working after I gave birth. After giving birth mere hours later I took my injection with the hopes that I would slide right back into the remission that I had been so lucky to have found. Imagine my surprise when I woke up the next morning at home in the worst pain I had ever had up to that point. Add in a decent case of PPD and yup, I was a train wreck with a new baby to take care of.
While I'm shocked to admit that we hadn't taken this into consideration, we pretty much thought that this was probably the worst thing we would have to deal with, I guess what I mean is we hoped this was the worst thing we would deal with. Until the last month or so that is...
That was when my daughter started having pain. We talked to her pedi and they said look for warmth and swelling. We did, nothing. As a veteran RA'er I knew that inflammatory arthritis is so much more than swelling and warmth, so when the pain started, I started to pay attention. We looked for swelling and warmth and found nothing but when I finally started to see a pattern I knew we were in trouble. When I finally put together that every morning my daughter was having morning stiffness I knew this was more than just the growing pains we had been pushing this off as for the past couple of months. Then came the text, "Mom, can you pick me up from the bus stop?"
I texted back, "Is something wrong?" and then I got a message back that said, "Everything is wrong". By this point I'm wondering just what happened at school because as some of you may remember Middle School isn't exactly the best few years of life. I grabbed by phone and called her and when she picked up she was crying. I don't know how much you know about Middle School kids but pretty much everyone knows it's never a good idea to show weakness, especially on a bus full of 7th and 8th graders (but that's a whole different story). When I was finally able to get her to answer she told me that she hurt everywhere and could I pick her up.
Of course I was waiting for her on the bus stop when she got home but I was pretty much unprepared for what I was about to see which was a pale, limping little girl trying to make her way to the car. It was like looking at myself in the mirror and I really wasn't quite ready for that kind of reality considering that I had a very difficult day myself. I had the heated seats on in the car and she crawled in and got comfortable. I took her home, dropped a few Tylenol in her mouth and tucked her into bed, she came down for food at midnight and then slept until morning. I on the other hand was completely wrecked.
How could life be anymore unfair? First, my daughter has to live with a mom that has a lot of health issues. She has lived through me being sick enough too die a few times and absolutely hates it when I go in for surgery (which I've recently had 2 in 3 months). So it's not bad enough she has a sick mom, now there is a great chance that she will end up with what I have. Before I tucked her into bed she asked me, "Mom, do I have arthritis?" At which point we both burst out in tears...how do you answer that question? Do you lie or tell the truth? Either way is equally horrifying. So I said, "well, maybe but we'll need to see a doctor so they can tell us" and then I apologized and cried harder. Because in that second I realized how selfish I had been and quite possibly she would pay for my choices with pain for the rest of her life.
Being pregnant took about 10 years off my life, my body completely changed after being pregnant and not in a good way. Every time I would see something get worse, I would calm myself with the thoughts that my daughter will truly be the best thing I ever do in my lifetime. She's a wonderful, sweet, compassionate girl. She loves the underdog, is a bit of a misfit and will always try and include everyone in whatever she is doing. As her elementary school principal told her "she has a big heart" and she will always be the best thing I've ever done during my time on earth. While that has consoled me when I see my health getting worse, I always knew it was for the greater good. She makes everyone around her better and willing to try harder, she's an amazing little girl (ok, not so little anymore but she will always be my baby, even when she's 40).
I always thought the deal was I would be sick and that life couldn't be horrible enough to make her sick too (why yes, I am a little naive, thanks). But here we are both hurting at the same time, both sharing ice packs and Tylenol and predicting the weather (she is even better than I am at this one which scares me to death). My poor husband and his two sick girls.
I would never wish my child away to save her from pain, I believe that life is better than not and even though I made a really selfish decision, I wouldn't change it for anything. She has changed my life so tremendously and helped change me into a completely different person than I was when she was born, but I feel so guilty for bringing her into this world when I knew there was a great likelihood that she could get ill from my immune system.
Needless to say every time I think about this whole situation I go round and round in my head until it's about to explode and then I slip silently into denial because it's just too big. How do you live with the fact that you ignored the odds and basically set your child up to have JA? I'm not 100% sure how I'm going to do that and let me mention not only do I want the lab work to come back negative so she doesn't have to deal with this disease, I also want it to come back negative so I'm off the hook, which also makes me feel very guilty. I don't know how I could have been so stupid and then I think of life without her and I can't even imagine how empty it would be. She is my life and I have spent the last 11 years pouring myself into her, I can't even imagine who I would be without her. Does that make me selfish or just a good mom?
I guess I'm not really going to solve my problem here but I'm hoping that maybe some parents of kids with JA will chime in and tell me how they deal with the feelings that come along with a JA diagnosis for their kids. I feel so blindsided and lost and maybe a little shocked at that because I've had this long history of JA, you would think all of this would come easy. Instead, I'm hanging my hat and cooling my feet in Denial Land until we get some results we can rely on.