Celebrating Inchstones: A broken heart and a new identity

Tuesday, May 31, 2011

A broken heart and a new identity

I've heard several messages and speakers lately talking about self esteem and self worth, about the need for identity and knowing ones self and one place in life. The latest time was just this Sunday. A singer and pianist came to our church. At the age of 6 he was run over by a lawnmower and his left leg had to be amputated. His father was a basketball coach so he identified as a sports star but that identity no longer fit. He discovered the piano and went to college on a scholarship and had a successful career in Branson, Missouri as a member of a quartet. He travelled the country with the quartet until he had a car accident and it paralyzed his left arm. He thought that was the end of his identity as a performer. Amazingly though he can still play and sing and perform with an artificial leg and a only one arm! He was great!!!

So tonight while I was laying down with Asa I started thinking about my identity. Before Asa I was a perfectly functioning person. I volunteered at the school. I worked in my church. I could carry on a full conversation. I was thankful and grateful for the blessings in my life. I was aware of how blessed we were to have a healthy family. I could parent, teach, play, cook, eat, enjoy activities with friends. I was a normal person!

Then when Asa got here the water got mucky. It was a crazy, strange world. Nothing worked like it was supposed to. Cooking, playing, working were all different and hard. Nursing, changing diapers, baby play was all different. I lost my confidence. I lost my identity as a Moma. It was no longer easy or very fun!

As we learned more about Asa and issues were piling up not lessening, I began to realize that the identity I'd painted in my head was not going to be. There would be one less on the ball team, one less in the school play, one less in VBS. Our family identity would be different and my identity would be different. And it was heart breaking! And I let God know all about it! It was a long conversation on my end, short on His! I finally just gave up the complaining and whining and gave my broken heart to God.

And God did what God does so well. He took my broken, lost heart and He healed it. Not only did He heal my heart but He made it better! He didn't just put the pieces back together giving me the same worn out, used up heart but he remolded and reshaped it to be more like He desires it to be anyway. He caused me to be able to see the positive and the good in my situation. He showed me blessings in the struggles we endure. He made my heart more like His heart.

Tonight I couldn't help but wonder what else He could do if I gave more of my broken self to Him so He can transform more of me. Why am I trying to find my own identity and not letting God show me what He can do? Why do I doubt my abilities and not just trust what God gives me? I am His perfect creation after all. He is the authority over me. He has proven His faithfulness to me time and time again. The only mold that I need to fit into is the one He has planned for me. Afterall I kinda like this identity!

Now if I can just remember all this tomorrow and the next day and the next day and the next day!

3 comments:

Clara-Leigh said...: Kim, THANK YOU!!!!!!!!!!!!!!!!!!!!!!!
Your post touched me in the deepest level, woke me up, shook my soul....I was just talking to my mom about this topic tonight....how God gave me soooo many amazing opportunities and great experiences right up until Garrett was 16 months old and we started this whole chaotic experience. I had aspirations to get my girls and Garrett graduated from our homeschool, then go back to school myself or start a business....because I would be sort of back to the original me.
But that was not to be and God has taken all of my previous history of ambition for achievement and success in the outside world away from me. And what a BLESSING!!!! And he knew just how to unfold it in his time so I would "get it."
SO I get it, totally, but to hear it from you made me want to jump for joy and appreciation!!! I get it. I am different, but it is good. I could be terribly disappointed, or I could be angry...wasted emotion!!
Hug that sweet boy for me!!!
Clara-Leigh; June 1, 2011 at 1:36 AM
Sara Eaton said...: I THANK YOU too, wow, this was just what I needed to read this morning!! I too question my identity daily... I think I will read this entry over and over and over today... it's perfect!!

xoxo; June 1, 2011 at 10:21 AM
Clarissa said...: wonderful post! and so true! God bless!; June 1, 2011 at 11:35 AM

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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!