Celebrating Inchstones: Why does God allow suffering

Tuesday, January 11, 2011

Why does God allow suffering

I follow a couple of blog regularly. OK, who am I kidding, I follow a dozens of blogs regularly! I've actually been very blessed to have some powerfully strong moma's that blog about their journeys and faith on my blog list! These two things don't always go hand in hand but I've been delighted to find many who use a strong faith to get through the struggles of life. I find encouragement in their knowledge of mito and special needs but even more so in their faith and love of our God.

A recent blog find is "Adapting Creatively". It has some great ideas for special needs families. I was pleasantly surprised to find this post on faith and suffering yesterday. I could have written it myself, it is that close to my heart. I'm just glad Rose-Marie beat me to it or you'd have to endure my typos, poor grammar, run on sentences and apparent LOVE for exclamation points!!!! SEE! Please, please take a moment to click the link and read even if you aren't the parent of a special needs child. There are all types of suffering and at some point you'll likely struggle to understand. It'd be great to have this message engraved in your mind for those times!

And the song that is quoted is one of my favorites! I adore Natalie Grant and "Held" brings me to tears each and everytime I hear it! It ranks right at the top of my list of songs for encouragement. Right up there with JJ Hellers "Your Hands". Sometimes we get the wrong idea about God, faith and struggles. We will struggle and suffer but the difference in a Christian's and a non believers struggles is that a Christian will not struggle alone! That is my encouragement!

And on an Asa note: His pink eye looks much better! The bad news is the pink eye seems to be replaced by a cold or virus! He has had a fever all day. Now both eyes are sad little sick eyes. He is coughing and sneezing and his reflux, poor appetite and DGE are all acting up. Other than a crabby few hours he has been pretty happy today. He played upstairs with Cade and Gracie for a while this morning. He got fussy and pointed upstairs so up we went. I sat him down and started playing with him and Gracie started telling me that I didn't have to stay with him. After about her 3rd suggestion I did come back down and he had a blast with them! Such a big boy!!!

1 comment:

Rose-Marie said...: Kim,

I'm so honored that you shared the link to my post with your friends! Thanks so much!

I'm glad you found a connection with it...and am also quite sure you would have done a more eloquent job than me of getting that same message across. :0); January 12, 2011 at 3:43 PM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!