I haven’t written in awhile. Amidst the end-of-summer craziness and back to school hubbub, I just haven’t really had anything worth writing about or the time to write it.
But, miracle of miracles; my kids are all in school. At this moment it’s just me, my dog, and a coconut mocha.
It’s a true miracle that Gabe is in school. Yesterday he felt good enough that we decided it was the day. His backpack had been packed weeks earlier. He was scared but I coached him on what to say if anyone asked what was wrong with his skin. I said if he started crashing at school to tell his teacher and I would come pick him up immediately.
I dropped him off and got tears in my eyes. He hasn’t been able to go to school since last February. He’s come so far and there were days we felt like we would never get here.
He had a good day and was optimistic going back again today.
I had posted about it on facebook when a facebook friend commented, “GIVE GOD THE PRAISE!!!”.
I know she meant well but I felt an unexpected pang of irritation and anger.
A couple weeks ago I had been worshipping in my car and God had revealed to me the nature of the thing I’ve been battling for months, or even longer…
My trust in his goodness towards me has been seriously wounded and it was shaky to begin with.
There’s been so many hard things, so many painful things…and then this? Even coming out (hopefully) on the other side of the worst of it…my soul has been so traumatized by witnessing suffering that no parent should have to see.
Sobs in the night. Wounds that won’t heal A true sense of hopelessness.
I know God is there, has been there. But, it’s complicated. I’m hesitant to speak to anyone about my feelings because I just can’t handle getting chastised or beaten over the head with platitudes.
I know what’s blocking my growth is my lack of submission to God. But how can you submit when you can’t trust?
I’m still working things out. I still believe. I still listen.
This is just where I’m at and I have to give myself permission to be ok with that.
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”
Warning: this blog contains graphic medical photos….
Gabe was doing pretty good. The liviaone probiotic spray was really helping to clear up his skin. He was still very much still going through TSW (topical steroid withdrawal) but still able to get out and enjoy life in a limited capacity.
Then last Monday he started not feeling well. Very tired, very irritable. By Tuesday he was getting a bumpy rash and was feverish. We assumed it was a staph infection. When it didn’t respond to our treatment at home, my husband took him in to the emergency room. We got a quick staph diagnosis and antibiotics and went home.
He was way too sick to go anywhere for fireworks on Tuesday.
Sometime mid Wednesday we realized that he wasn’t responding to the antibiotics. The rash of little red bumps had spread all over his body.
My Mom came over and suggested it might by measles, which I quickly dismissed. Later I realized I knew very little about measles so I do some quick googling. I realized that Gabe’s rash looked very similar to the typical measles rash.
He also had the other symptoms of headache, sore throat and tongue, fever, etc…
We brought him in to urgent care Wednesday night. The took swabs and samples and said we would know by Friday if it were measles or not.
By Friday, Gabe was still in rough shape. The measles plus his underlying TSW made for a hellish week for everyone. Gabe’s skin was literally peeling off. A thick layer of dead skin would come right off to reveal still-too raw red skin underneath. You can see this on his feet…
This obviously involved a lot of pain for him- on top of the other symptoms of measles and his TSW flaring.
Yesterday I brought him in to see a pediatricion to get him something stronger for his pain. Ibuprofen wasn’t cutting it. When I got to the clinic the ladies at the front desk all made knowing eye with contact with each other and backed away from the desk. Great, Gabe is the “measles kid” and everyone at the clinic has been talking about it. He had a mask on and they were well over 15 feet away but the reacted as though I had just rolled up with a zombie-leper in that little child sized wheelchair.
We got Gabe some tramadol and vitamin A. But at this point we still don’t have answers. None of the four doctors who have seen him this week have ever seen measles before. The state health department has taken over his samples and testing so that is delaying getting our answers until Monday or even Tuesday.
How did Gabe get the measles? We don’t know for sure yet (we don’t even know 100% if it IS measles…) but just a few days prior to all this I had read about documented cases of people getting sick after coming in contact with someone who had recently been vaccinated with a live virus. Gabe had been around a young child who just got her MMR shot in the days leading up to his illness. It’s very possible that the child was shedding the measles virus and Gabe was susceptible due to his weakened state.
The Doctor told me that they will be able to tell if his strain of measles is wild or cultivated. Basically if he got it through vaccine-shedding or by a random encounter with measles. How has he been handling this? Not well. It was a huge setback, not just physically but psychologically. For a little boy who’s been through so much. This was just too much. Several times, when the pain was really bad, he talked about just wanting to die so he didn’t have to be suffering anymore.
As a parent there just isn’t much worse.
We are holding to our faith and the power of prayer. We tell Gabe continuously that he is going to get better. There is a light at the end of the tunnel. That God loves him and is going to cause all this suffering to work for his good.
He’s still very much in the thick of it so if you could take a moment and pray for his complete healing, that would mean so much to us.
Gabe started topical steroid withdrawal in mid-February of this year so he is 4 months in.
The bright red skin of the first two months has faded and now it just looks like he has horrible eczema/was in a car crash. The areas that still look really awful are where we applied steroids the most and longest- wrists, feet, ankles and legs. His face is flaring though we never really applied steroids and he never had eczema there.
His energy levels are still maybe 35% of what they used to be. He still spends a lot of time sitting in his favorite spot, the recliner. He is able to be active and enjoy some quality of life thanks to some supplements we do everyday.
Right now what is really helping him is astaxanthin. It’s a super potent antioxidant that is reportedly 6,000 times more powerful than vitamin C!! I carry him out of bed in the morning and after breakfast he chomps up a 12 mg capsule of astaxanthin and within 10 minutes he is feeling 80% better and is able to get up and run around and be a normal kid. His mouth is perpetually stained orange but it works!! Astaxanthin is a naturally occurring antioxidant found in red algae (and sea food). It’s what makes flamingoes pink!
We still give him CBD oil (yes, from marijuana) when his pain and anxiety levels are very high. We give him 3-4 drops and he holds it in his mouth for 30 seconds before swallowing. It really helps him and the benefits go behind pain relief.
We also give him detox baths every other day. Epsom salts, dead sea salts, lavender oil and sometimes a bit of bentonite clay. He likes the water very hot and even though it usually stings at first, he never wants to get out. It’s the only place he doesn’t feel pain or itchiness.
Gabe also take probiotics and drinks a lot of kombucha. He is constantly asking for fruit so we try to stay stocked up.
His sleep is still a nightly struggle. So 1-2 times a week we give him 10 mg of hydroxinine to help him get some uninterrupted sleep. We get a break and he gets to sleep through the night without shredding up his skin.
I just ordered liviaone topical probiotic spray and I am pretty excited to try it out. I really think it will help Gabe heal because of so much of what he’s been through (similar to most people with eczema/TSW) destroy good bacteria on the skin- the steroids, the antibiotics, and bleach baths…. that I really feel he will be able to heal much more quickly with the introduction of healthy bacteria to his skin.
What I’ve tried that hasn’t been successful-
A high grade sodium bicarbonate (baking soda). There is a lot of buzz about safe soda helping people heal very quickly on the TSW pages. Problem is, this stuff is super expensive and hard to get. I tried what seemed to be a similar alternative but without success. I haven’t ruled out safe soda but it’d be painful to spend $60+ on a small contained of baking soda.
Essential oils. I’m a huge user of them. I’ve used them near daily for the past four years. I just can’t put them on Gabe because his skin is so sensitive that they make him worse. A couple drops in the tub is ok, applied topically just seems to be too much.
Homeopathy. Granted we went right in the beginning and we were exhausted and overwhelmed. We left with like 20 supplements all with complex directions. Half of them were pills that he couldn’t even swallow. It was basically a waste of $500. It probably would have worked better later on in his treatment and if it was more simplistic and doable.
My little girl turned five on Thursday and my mom and step dad came out last night. They gave her possibly the best gift for her- a gumball machine! Shiloh is a bit obsessed with gum so it’s perfect for her. Gabe had a good day too. His little friend came over and he got to play and have fun like a “normal” kid for the first time in a loooong time. Then he felt up to playing outside with another friend for another hour and a half. Lots of giggling and running around. It made me so happy because since we quit topical steroids nearly three months ago he has been going through hellish withdrawals and had many days where he had to carry him because he was too weak and in too much pain to walk.
So he had a great day and got to have cake and ice cream!! You can see there is still some redness and scabbing on his face. But he has come so far from these days… I got another gift as well. Gabe had been upset about getting disciplined by his dad. He was really pouting but I went up and cuddled him anyways. He said, “Mom, I like being around you because you are always really happy.” That meant a lot to me because I have really struggled with depression but I don’t want it to affect my kids at all. I’m so glad Gabe doesn’t see that.
Don’t worry, this isn’t going to be a “there’s demons in the rock music” type of post… just some random reflections and what’s been rolling around in my head lately.
Just within this past week or so I have been coming to grips with the fact that I have depression. I think I’ve always put my depression in the context of “overcoming” just because that’s how I’m wired. I’m an INFJ and part of that I am always aggressively looking for ways to improve myself, including my mental health.
“Feeling sad? Feeling down? Nothing a good workout and chocolate protein shake can’t fix!!”
Recent events have brought it more clearly into focus. I have depression. I’ve probably had it since I was 13. I usually manage it well enough through healthy coping mechanisms (and let’s face it, sometimes unhealthy ones). I’m a sensitive person, I think and feel very deeply. I naturally tend towards melancholy. Out of all 4 of my siblings and I, I think it is safe to say we all struggle with some degree of depression and anxiety every single day.
There is certainly a genetic component as well as a very real spiritual one. I do struggle with depression however I do still hear from God, I do still feel a great deal of happiness in my life- because of my relationship with Him and all the gifts he has showered down onto my life.
I can honestly say I don’t think I would have survived my depression without God breaking through into my life. “the people living in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned.” Matthew 4:16
With the passing of Chris Cornell I can’t help but reflect on my past and the impact depression has had. I was only a kid when the grunge movement was big but my older siblings were really into it. When I got into my teenage years the angst and authenticity of the music really spoke to me. My favorite band was Soundgarden…and then of course, Audioslave.
Chris Cornell was, like many artists, a sensitive soul that battled his own demons and dealt with depression. We don’t know for sure if his death was a suicide, but it seems likely. He likely fought the depression and the darkness the best he could, until he couldn’t.
I’ve gone through major crisis’ in my faith. When I came to God I knew I had major issues, deep pain in my heart. I knew I needed healing. I knew I carried a shame around in my soul that tainted every part of my life. I sought God with everything, I sought healing. I prayed, I fasted, I wept…. for years. Yet I still feel such angst in my soul. I still wake up everyday and feel the need to prove my worth. I still fight to keep the depression at bay.
I really don’t like offering up “untidy” blog posts. I really like to post when I’m pumped up on a spiritual high with God and feel like I can offer inspiration. Those times are true and genuine but they certainly don’t capture the whole story.
I feel like I want to be a little more real in my writing. Because, well…there are no “successful Christian makeover!” stories, at least not in the sense that we get so healed and delivered that we live in a sort of spiritual reverie, immune to the flesh nature, with a perfect grin and perfect family until Kingdom come.
It just isn’t reality.
In being thrust into a caretaker care for my son, a lot of the self-medicating (or coping, tomato-tomato!) tactics I’ve used have been really messed with. The things I use to prop myself up (don’t we all have them?) where suddenly taken or just not enough. I’ve realized my motivation for serving God is actually very little when I am really hurting and my prayers seem to go nowhere. “If we are unfaithful, he remains faithful, for he cannot deny who he is.” 2 Timothy 2:13
Just today I was feeling down about something when I heard God speak to my heart about how He loves me. He loves the “hot mess” me. I remembered a time, when I was in my early 20’s and seriously depressed. I couldn’t love myself and couldn’t imagine God could either. I stopped praying. I remember sitting on the dusty carpet in my bedroom near tears when this song came on the radio… https://youtu.be/Ek4I6BeMQIs
I just knew that song, at that moment, was for Me- from God. I bawled and bawled. It was a real moment in my life where his light burst forth into the deep darkness I found myself lost in.
I struggle with wanting to wrap everything up into a neat little Christian bow but I really can’t. As my 8 year old was asking me why God has allowed him to go through these years of suffering, there really aren’t any easy answers.
I think in this life the pain is real. The hurts are real. Especially the hurt we all carry around in our hearts. So much of life seems random, chaotic even- but for the moments that the light of God breaks in. Somehow we survive and come out a little softer, a little stronger.
It’s ok to be hurting. It’s ok to have questions. As long as those pangs and hurts ultimately lead us to our Healer, into a deeper relationship with Him, as he slowly unravels the hurts and shines his light into our deep darkness. And if we take a detour, He will come and rescue us when we are ready.
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!!