See, it’s been raining here for dayyysss. Our back yard is a soggy marsh! But yesterday was beautiful. Sunny and 65 degrees. I was really hopeful that we’d be able to get out and hike and have fun as a family.
But Gabe went downhill really quick. By the time we got to the park he was already frantically itching. He shredded up his legs and feet. We had to go home where I spent the rest of the day caring for him.
As much as I love him I have to admit that being a caregiver to a very ill child is incredibly draining. It hasn’t just been weeks, or months, but years of this.
But what also happened is that we had a really rich spiritual conversation. Gabe’s suffering has made him very sensitive to the things of God. That and all this time I’ve spent with him has made our bond so close.
Sometimes I just stop and thank God for giving me such a great kid.
I think about how when he was so little, the times his father and I knelt down next to his little toddler bed and prayed over him while he slept. We dedicated our child to God and asked that he would use his life in powerful ways.
I was praying a few weeks ago and feeling very discouraged and hopeless even, but God reminded me of those prayers. He told me, “Just keep dedicating him to me, every day.”
I woke up this morning and prayed and petitioned God with tears. for his healing.
I got this image in return of the sun rising over the empty tomb.
It’s our faith, it’s our life. The empty tomb is the hope of humanity.
By his stripes we are healed.
Suffering and pain may come knocking at our door. They may even stick around far longer than we’d hope. But the empty tomb gets the final say. Weeping may last for the night, but JOY comes with the morning.
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.
Yesterday I took just Gabe out shopping. I don’t often get to spend alone time with him and I was reminded what an amazing kid he is. He has such a tender soul. He wants to run an orphanage when he grows up… but he also wants to drive a Ferrari, so… 😉
We had a fun time, just the two of us. On the way home he kept asking me about Heaven and what it’ll be like when Jesus comes back.
I explained to him that Jesus will appear in the sky with great glory, riding the clouds. That every eye will see him, even those that pierced him. That we will rise to meet him and be changed, to be like him. That there will be no more sickness, death, pain…
I got choked up and so did he. He said, “Mom, I can see him coming.” I said, “honey that’s the Holy Spirit showing you that it’s true.”
You see, just the day before he had been in a lot of pain. In between tears and sobs he had asked, “if God loves me, why am I suffering so much?”
The conversation, and the sweet presence of God, was something we both desperately needed. Something that I need more of.
In my own suffering I tend to turn away. I feel like I can’t take anymore disappointment at times, without losing hold of my faith. But yesterday, it was like He peeled back the curtain obscuring eternity and gave us both a glimpse of our future and the end of suffering. I felt a glimpse of the eternity and wonder awaiting us, and looking over at Gabe’s tear-filled eyes, I know he did too.
I know that Gabriel is being molded in ways I can’t even begin to comprehend. I know he has a huge call on his life. Even at the age of 8, there is a level of tenderness, empathy and hunger for knowledge of God that is amazing…. probably as the result of all the suffering he’s had to endure.
We can got lost in the hardships we face but we need to remember that life here is short and eternity is long. We can’t choose the trials but we can choose how we face them. Our God loves us.
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.