Spring, Sadness, Hope

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.

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This was about 1 1/2 months ago.  Yep, RSS is that horrific.
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That’s him now.  Not healed but making progress!

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!!

Rebirth

It’s a bit gloomy here (spring is always dicey in Minnesota!) but there are undeniable signs of spring.  I can hear birds chirping right now and the sun is trying to peek out.  I have been so happy because I love spring so much.  The winter here is long, cold and dark.  It isn’t even just the weather though, it’s that spring is such a symbol of new life and rebirth.

Spring always brings fresh life spiritually as well.  I love Easter and all that it represents.  Ten years ago it was spring when I finally let God in and had the most joyful season of jubilee that I will forever be marked by.

My life is a bit crazier than usual at the moment.  I am in a full-time caregiver role to my son who is navigating red skin syndrome.  He is mostly bedridden.  His hands, wrists and legs are the hardest hit.  So much so that walking or even writing with a pencil is difficult, and at times impossible.   He is also struggling with insomnia so he is often very tired and cranky.

I know it is so imperative that I stay positive and joyful as his caregiver.  Positivity is HUGE in healing.  https://www.psychologytoday.com/blog/owning-pink/201112/can-positive-thinking-help-you-heal  I need to create an atmosphere of positivity to help Gabe cope with his pain and frustration.  Also, I need to stay positive to cope with being thrust into a very intensive caregiver role.

I had been really struggling.  Big time.  I was just succumbing to the negativity in my circumstances.  It wasn’t just everything Gabe was going through.  We all got sick for a ridiculous amount of time, two rounds of back to back flu.  Plus my youngest acting out to get more attention (can’t blame her).  Plus family drama.  It was just a lot to deal with.  And when I feel like that I inevitably start getting angry with God.

God is good and loving and generous and all that.  But there are seasons where he really wants to mature us.  He wants us to seek his face, seek HIM, and not all the wonderful blessings he bestows.  We all get our “Job” moments.

I feel like I’ve gotten more than my fair share….but then I realize God had also bestowed such underserved favor and blessing on me as well.  I have SO much to be thankful for.  SO much.

I decided to really embrace joy and walk in trust and joy has been bubbling over.  I have been ecstatic.  I’ve been really happy.  Really.  It’s proof that we can be joyful and thrive in our faith even when circumstances are beyond difficult.

“Rejoice in the Lord always: and again I say, Rejoice.” Phil 4:4

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Gabe is doing pretty good at the moment.  I discovered a new very promising therapy for him, cannabinoid oil.  I had been applying it to his skin without much improvement but then I decided to give him a drop internally.  Wowza!  He showed a huge improvement.  He was happy and walking around and playing, which is kind of a miracle at this point.

Unfortunately I had already used most of the bottle on his skin so I ordered some more this morning.  If this process has taught me anything it is that we should look to natural cures and therapies that work with the body instead of against it.  Many people take steroids (which shut down the bodies inflammatory response) then when that stops working they get immunosuppressant drugs which shut down their immune system.  We were perscribed such immune-destroying drugs but I’m so glad we didn’t use them.

In closing, please know that there is a God in Heaven who loves you.  He created you.  He uses both the good and the hard things to get your attention, to make you look upward.

“No, in all these things we are more than conquerors through him who loved us.” Romans 8:37

 

 

Getting through this Season

I wanted to write another update on Gabe, because I haven’t for awhile and people ask how he is doing frequently.

It’s 6 weeks in and he is still in the hardest stage.  People keep asking, “is he better yet?!”  No, he isn’t.  It’s a long, painful process and it just takes time.  No, it isn’t an allergy.  No, it isn’t eczema.  There is no magic bullet.  His body has to withdraw from the powerful steroid creams.  That is a painful and difficult and long process. 20170322_133757

The withdrawal started on his torso and neck but has worked it’s way down to his legs and arms.  His neck and torso do look a lot better at this point.  His legs look awful.  They are by far the worst hit, because they received most of the steroids over the years.  They are so dark they are almost purple.  Every night we have to wrap his legs in bandages so he doesn’t shred them.  Every night those bandages are soaked in blood and ooze. 20170322_134059

Because of the rough shape his legs are in, and the toil the withdrawal is taking on his overall health, he can’t walk at this point.  Well, not more than a few steps here or there.  We carry him around the house.  We are almost housebound.

We’ve been dealing with not only this but two rounds of the flu.  Plus, a certain neglected 4 year old decided to stop going #2 on the toilet for a week.  It was a week of negotiating and cleaning poo out of her clothes and off of carpet, walls, the ceiling (JK)… and on top of that I’ve been dealing with hurt over a lack of support through this, from the people I’ve supported in the past.

Plus most days we are exhausted because Gabe isn’t sleeping super great and needs treatment or just support through the night.

They say when it rains it pours.  It can get hard to stay positive and I’ve done my fair share of crying alone in my closet.

Hurt and disappointment seep in and have a way of hardening the heart towards God.  I woke up a couple days ago with the thought resounding in my mind, “you have an enemy and it isn’t God.”

God doesn’t cause the pain or hardship however he allows it.  Pain can be a powerful impetus for change.  I know I have quite a few “weeds” in my life that God wants to prune away.

 “But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.  We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted, but not abandoned; struck down, but not destroyed.” 2 Cor. 4:7-9  joy-comes-in-the-morning

Yes it hurts, and it’s hard.  But we know that we will get through this.  We know that God is for us.  We know that there will be a rainbow after this storm.