Celebrating Inchstones: Blessings, Part 2!

Wednesday, March 30, 2011

Blessings, Part 2!

I really thought I was done after last night. But God just keeps putting stuff in front of me that brings me back to this point. I also think that the title may be misleading or misunderstood at first glance. Maybe it should be "Sufferings?". Yes, with a question mark. Aren't some of our biggest blessings also our biggest suffering? Who are we to question what is a blessing and what is suffering?
I'm a member of a message board where a lot of parents have kids with special needs. A recent comment/question had to do with faith or a lack of faith. Is it bad to question God and wonder what He has in mind for your life? Does God show favoritism and heal some and take from others? If you don't get your prayers answered in the way you want, does it mean you are doing something wrong or not asking properly? So many questions and there is no simple answer.
And then we saw Dr. K and my focus shifted from how different Asa is from other "typical" kids to how much different Asa is from other mito kids. It could be said that we have been given a blessing by having Asa to be so healthy. I won't argue with that!!! But do I think that our family has done something to earn Asa's health? NO!! At one time we were on a parallel path with several other kids. In the last 2 years many of these kids have taken a different path from Asa. A path full of hospitalizations and procedures and interventions. So did our family say the right pray and so God granted us health? Were MY actions good enough to earn Asa's health? Did I "name it and claim it" for Asa's health? Or more in my character, was it my constant begging and nagging?
And finally, our church bullentin had some of my favorite verses on the cover Sunday. It was a selected passage from Job.
So let me give you a few lessons I've learned from God's word and His actions in my life. The first verse is at the bottom of this blog, Jeremiah 29:11. I find comfort and stregth in the fact that God has a plan for me. And it is not a plan to harm me but a plan of hope and of a future. "Future" means ongoing, not ending in me! And I've shared my feelings on this verse in detail before so I won't waste your time going over it all again.
But just because I have accepted that God has a plan doesn't mean it is easy peasy now! But I do know that God is with me and leading me along His path. All I have to do is follow along and not get distracted with what is going on around me! And just like Moses said in Exodus 33:15, if God's presence doesn't go with me, then I don't want to go! And when Moses questions how he will know if God is really with him, God shows him! God places Moses in the crevice of a mountain. He goes before the crevice, announces Himself as Yahweh, covers Moses' face to protect him from the full glory of God and then uncovers Moses' face so that Moses can see His back and know He was there!! Can you imagine being Moses!!! I have not seen God's face but I know for certain that I have seen His handiwork! Not as it has happened, most of the time, but only after a time of reflection. What glory would I get if I was just able to see God work! Instead I'm usually busy with my work and not looking for God's work.
And finally there is my reflection of Job. I love the book of Job! On one hand, I just want to shake my head and feel pity for poor ole Job. But on the other hand, I look at Job and think what a blessed guy he was! I'll sum it up if you haven't heard it before. God removed His protection from Job despite (or because of!) the fact that Job was "a man of perfect integrity, who fears God and turns away from evil". Satan could take anything from Job except his life. And boy did Satan do just that!! He took his livestock, his family, his wealth and servants, and even affected Job's health nearly to the point of death. I find it funny though that Satan didn't remove Job's "friends" from him! Once all is taken from him, Job starts to question and justify himself to God. My favorite part of the book is chapter 38. I love it when God brings on the holy smackdown....that's my words, not Job's! God asks were you there when I established the earth (verse 4), or closed the sea in (verse 8), or commanded the morning (verse12), or sent out the lighting bolts (verse 35)! Now really can Job or any of us argue with that!! Job responds in Job 42:2, "I know that You can do anything and no plan of Yours can be thwarted"! And that leads me back to Jeremiah 29:11 and God's plan for me.
Why should I question the plan? And even futher, how dare I question the plan? And I don't say that lightly! Of course I do question and wonder but in the end I recall and study the passages I've given you here. I hope that maybe you can relate and use these verses and lessons too.
And one other point, I've found that since I've had struggles I've grown in faith. Before Asa I would say I had faith that God could move my mountains. Looking back all I had in front of me was a grain of sand. Even now I feel I only have mole hills but I've seen God move them so yes, I do think he can move true mountains!! Be wary of someone who tells you that you don't have enough faith or XYZ would be removed from your life! My thinking is they've never had an XYZ in their lives!!
So blessings or struggles? I say blessings! What about you?!

1 comment:

~Jana~ said...: Blessings!! Can you tell me the name of the special needs message board you are a part of? I need to find a good one. Thanks!; March 30, 2011 at 5:58 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!