This is just going to be kind of a random blog about Gabe’s progress and life in general.
Gabe is now 5 months into topical steroid withdrawal. I know I left off with sharing what rough shape he was in a couple weeks ago (with what may or may not have been measles…) without any real update. He did get better. Now he is back to his usual TSW self.
His skin looks much better than in the early days (or even two weeks ago with mystery illness!) but his energy levels are still very low. I imagine long term topical steroid use caused major adrenal gland suppression and it is just taking a long time for them to “re-boot”.
At this point he is still sitting in his favorite spot, the recliner, for most of the day. He doesn’t want to go anywhere. I can’t blame him. Minnesota summers are hot and very humid and it aggravates his condition horribly. Just 5-10 minutes outside will lead to a 20 minutes “itchfest” where he’ll scratch till he is bleeding and in pain.
One of the hardest things is feeling guilty because so much of my time goes to taking care of Gabe. My other two children just aren’t getting as much attention. We could have picked a better time to start! I feel like we are all missing out on summer fun, seeing as how we spend most of our time indoors.
I know next summer will be different, will be better.
In the mean time I can’t wait for school to start. I know moms aren’t supposed to say that, but it’s true. I am truly an introvert, and I need a good deal of peace and quiet every day for a sense of emotional well-being. Being mostly stuck inside all day with three loud children is very draining! That plus the fact that many nights Gabe is literally up till midnight and then up again at 7 am, needing care.
As someone who is naturally prone to depression, I feel like I have been handling this all really well. My husband is my support system for sure. Plus my sweet dog (the subject of my last blog post) he is always there with his comforting presence. And of course, God (!!!).
There has been quite a lot of pain along the way. In that this condition is very alienating and I haven’t gotten as much support from other people in my life as I would hope for. I have felt judgement (real or imagined) at our decision to take Gabe off of his potent steroid creams.
I know that ultimately it really doesn’t matter what anyone else thinks. My husband and I are 100% on the same page. We feel like God led us to this point. I know that Gabe will heal and that will be vindication in itself, along with being our greatest hope realized.
In closing I think that so often we feel like if God is with us, the journey would be easier. We feel like if we are hurting and exhausted, God can’t possibly be involved. But that just isn’t the case. Just like how he met with the Patriarchs in the desert, he meets with us in our “desert”.
“I will make rivers flow on barren heights, and springs within the valleys. I will turn the desert into pools of water, and the parched ground into springs.” Isaiah 41:81
“Lord, help us to find your streams of life-giving waters in whatever barren wilderness we find ourselves in. Help us to rise above our circumstances as we keep our eyes on you. Do a work in our hearts as we submit the brokenness of our situations to you. Help us to know that you are the prize we seek and that we have eternal value as your workmanship in Christ Jesus. Amen”