I watched this video yesterday and broke down crying. It pulled on my heart strings because I know exactly how each of the moms feel. You struggle privately and have to put on a brave face for your kiddo.
Going through TSW is incredibly isolating because it isn’t a well known condition. People have never heard of it. Whenever I post updates or pictures I always get people saying things like, “OMG! That’s an allergic reaction!” or “coconut oil took care of my small patch of eczema!” Insert head-slap here.
Also not particularly helpful is reaching out to the mother of a sick child….trying to sell them something as a MLM distributer. We’ve tried every lotion on the planet at this point, I’m sure yours isn’t going to be the magic bullet that will end his suffering. But….um thanks for offering??
Or posting progress pictures. I always point out that’s he still has a long way to go. But still people “be like” Hallelujah! He’s finally healed!! Um…slow down. He’s still very much suffering and going through this. I just like to post pictures when there is any progress to encourage myself and let everyone else know how he is doing.
Speaking of that, he has come a long way. When you deal with something like this it is easy to fall into hopelessness because it just goes on….and on. He’ll make major progress and then flare again. Our hopes will rise, then get squelched. But I know every single day we weather brings us one day closer to him being healed.
At the moment he is flaring on his face pretty badly. He doesn’t want to leave the house, because he is so embarrassed. He’s lost weight off of his already very skinny little body. In spite of seemingly eating 24/7 he is very thin and his clothes hang off of him.
I also believe he is healing on the inside too. His organs became steroid dependent as well. Every morning he has a hard time getting going. We need to carry him out of bed, get him breakfast, and then bathe him. I still need to wash all his bedding every single day. Because every night it gets bloody and crusty and covered in his dead skin.
We are hitting this thing from every possible angle. Probiotics, vitamins, homeopathy, bone broth, garlic, sea salt….just every thing we can do to help him.
That’s been our focus and it’s really brought us all together. I feel closer to my husband than ever. I thank God for our solid marriage. He has been my partner in this 100% and is so quick to sacrifice for his family.
Most days we are doing pretty good considering. When you’re going through a long term crisis everything else get’s backburnered. We barely celebrated Easter. We haven’t really been able to go to church in ages because it takes so long to get Gabe going in the morning. I was ok with that until I drove past a cross with ribbons billowing in the wind the Monday after Easter. I felt an unexpected tidal wave of sadness at not being able to celebrate my favorite holiday the way I would have liked. It threw me into a bit of a depression for the rest of the week.
But I know that next year will be totally different. Next year we will go all out for Easter. Next year we will properly celebrate our Anniversary.
We know that our faith has carried us through this and also all the many prayers offered up for Gabe. Thank you everyone for your continued support and prayers!!