Celebrating Inchstones: Plans, hope and a future

Sunday, April 11, 2010

Plans, hope and a future

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I'm a planning person. I WAS a planning person! Then I was surprised. We didn't plan for Asa, he was a surprise to everyone but God! Then once I got settled into the thought of this "surprise", the surprise came with surprises!! That is when it become harder to plan!!

In the early, really tough days (mostly the nights!) I tried to plan and reason why Asa was suffering. What could I do about it? How could we fix it? There sure weren't baby books on any of the stuff we were going through, we had no plan! Even the plans we would make would go sour. That made the plans even worse!

So one day God gave me this verse of scripture! It has become my life verse! I have no idea what the plan is now but someone better does! God has a plan for Asa, for me, for our family! It sure isn't the one we thought we were on but it is a plan of more than I could ever ask for or imagine!!

So, I was delighted when our pastor started preaching from these verses this morning! Cause, you know, I got this verse figured out, right!! I could get an A++ if we had a test after the service! Well, turns out there is more to this verse and guess what, it fits into my life even better now!!

This verse was given to the prophet Jeremiah, by God, for the exiled people of Israel. You see, they had been taken to a foreign land, against their will. They were in a strange and unfamiliar land. In Jer. 29:4-7, God tells the people to "settle down" in this new land, to continue to "marry" and "increase in numbers" (which is basically "go on with life"), to "seek peace" and "prosperity of the city to which I have carried you". The end of verse 7 says "because if it (the city) prospers, you too will prosper"!

Wow, that spoke to me! My mind jumped right to the poem "Welcome to Holland". I wasn't given a choice to be in this land of special needs parenting. And I resisted at first. I prayed that I'd wake up in the morning and it would all be a bad dream. I prayed the supplements would amazingly "cure" Asa's tone and one day he'd just start to sit up and crawl and walk. I eagerly went to appts and sought out the experts and advice, just knowing we'd find a magic combo that got us out of Holland and on the first flight to Italy! Then one night, I decided maybe God knew what He was doing when He put us in Holland. Maybe Holland isn't so bad if we just used the guidebook God gave us. You see, it applies to Holland or Italy or any other country!

And while I didn't throw out the regular handbook and I still flip through my Italy tour guide occasionally, I have come to love Holland! And you remember the part about prospering the city you are in.....there are some amazing families that make Holland rock! You might look at a special needs family and feel pity but let me tell you, I know some awesome families who would pity a "normal" family! By sharing info and tips and ideas, not to mention the amazing support and love, we make the special needs community prosper. Not whither away in some corner. Just look at Morgan's Wonderland....talk about prosper! Maybe Walt and Co. should look out!!

I love it when I get a familiar passage of scripture and learn something new. Something relevant for me, for now! There is a ton more stuff I could say about this scripture. I could go on about how the Israelites were banished and suffered to be molded for a better, higher purpose. I could go on to talk about how the struggles and trials of life only make us rely on God more and better us for His kingdom. I could mention that many suffer more than we do and God cares and sees their pain and needs, and He has a plan for them too.

But it is just enough to rest in the idea that I don't have to make the plans anymore. That part is taken care of, all I have to do is follow the map! And at the end is prosperity, hope and a future! That is enough for me tonight.

4 comments:

Debbie said...: Love it...thank you for sharing and revealing what you have learned in Gods word.

Thank You!; April 12, 2010 at 12:01 AM
MamaHam said...: That is my favorite bible verse and one that I held onto when I was pregnant with Ethan and the doctor's told me to abort...; April 12, 2010 at 7:39 AM
marie clare said...: I love this scripture too, and have been saying it over and over in my mind to give me understanding that theres a bigger plan for all this. Im not quite loving Holland yet, but getting there, and yes you are right, its because of all the awesome travellers we meet along the way. Thank-you for letting us share your journey.; April 12, 2010 at 12:56 PM
gg said...: I noticed the scripture on your blog when you started it. It's also my favorite verse...it just speaks to me.; April 12, 2010 at 4:07 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!