This is something I have learned to tell myself time and time again in the entire course of my life really, but definitely over the passed year. It was about this time last year that it all started. At some point I will reflect on the details and the emotions, I feel like everything just happened yesterday. But for now, I will reflect on the present.
Last week we received a call that Ella's immunoglobulins were low and she was in need of another IVIG. She has received 6 IVIG's so far, once a month from February to July this year. I'll be honest and say sometimes I still don't know the exact medical terms and reasons for things but from my understanding this is a good boost to the immune system. Everything else has been looking good- all labs have been great except for the immunoglobulins are a little low. So, on Tuesday of this week I took Ella for her IVIG. The infusion went smoothly, all labs looked great and she even returned back to school on Wednesday! Thursday (Halloween) was another story.
We woke up and Ella was so excited about Halloween and trick or treating and of course her costume. They were able to wear costumes to school for character dress up day and all was going well. I dropped the girls off then headed over to bible study. As soon as I sat down I received a call from the school that Ella was acting off and not herself. We thought maybe she was a little standoff-ish because of the costumes and she was nervous, etc. Well, she was getting warm and only wanted to be held. So I left and went to pick her up right away.
I admit it adds another element of anxiety when your child is sick and you worry that it could cause a flare in another disease. Even though we've been assured vasculitis is treatable, it's only normal to worry. After a long day of phone calls, pediatrician visit and more phone calls it turns out she was having a reaction to the IVIG. The frustrating part was when I spoke to the first nurse with rheumatology she was pretty adamant that it would not be from IVIG. As any parent would, I spent the better part of the day going back and forth in my head speculating what it was and worrying about she couldn't go trick or treating cause I didn't want to make any other kids sick. Finally, around 5:00 Clif was able to talk to the rheumatologist directly and she did confirm it was from IVIG. Luckily, we haven't had to deal with any adverse side effects before… so blessed by that. But this time we are. Apparently you can have headaches and nausea up to 72 hours after the infusion. Sure enough, she's had both.
Sometimes I feel like I can't handle it because I feel like I'm not doing a good job. Satan has a good way of attacking when you're down and telling you that you're not good enough, you're worthless and you're a failure. He told me that yesterday. This morning I opened my Jesus Calling devotional and the first words I read were "DO NOT BE DISCOURAGED…" Coincidence? I think not. And reading on there's a line that says "You live in a world that has been rigged to distract you." I can honestly say I've never thought about it that particular way. I've always said and known we live in a fallen world and everyone falls short of the glory of God, but never thought that because of that we live in a world that is basically assembled to distract us.
So today, I choose to be aware of the fact that we live in a fallen world… but I choose not to let it bring me down with it. I am more than blessed by the love and support from great friends and family that the Lord has put in my life. Especially my husband, Clif. He is my biggest encourager, supporter and my best friend. I thank God for giving me such an amazing husband that I do not deserve.
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