Sunday, May 22, 2016

The Stayed Life

The stayed life is one that trusts in the character and attributes of God in so much that his own trials, fears, and needs become insignificant in the light of the knowledge of God.

The stayed life, then is one of complete rest in the sovereignty of God.

The stayed life is one of everlasting strength from God. Our eternal God is truly our refuge where under Him are everlasting arms of strength and comfort (from Deut. 33:27).

The stayed mind is not troubled at the thought of earthly loss or death because it is gripped with the unrelenting knowledge of God who is eternal and who is preparing an eternal home for all those who believe in Jesus as Savior.

We must, as the hymn, "Like a River Glorious," states: be stayed upon Jehovah in order to find the promised peace and rest from God.

The stayed life is one of humble prayer. The one who is stayed on God knows that their own flesh prohibits them from knowing how to pray, yet they do so, and in doing so they are assisted by the Spirit who then, with God, works all things for their ultimate spiritual good and for the glorification of God in their life.

The stayed life knows that in order to truly glorify God, he must suffer like Christ so that he can be a joint heir with Christ.

The stayed life loves the eternal God - loves eternity. He is stayed on heavenly things - not this earth. Earthly pain is difficult, but being stayed on who God is keeps him in perfect peace.

Isaiah 26: 2-3
Deut. 33:27
John 14:1
Romans 8

Thoughts gleaned from today's sermons

Revisiting Trenton Part II - CHARGE syndrome

I realize that many of my current friends have never heard the first stories about Trenton that were on my blog.

Not many people have heard of CHARGE syndrome - probably including many doctors. It's a genetic mutation that was originally considered an association illness where a child had certain attributes and were put into one category. Not much has changed except that now most kids are found to also have the gene.

CHARGE is an acronym for the following: coloboma of the eye, heart anomalies, choanal atresia, growth retardation, and genital/ear anomalies. Sometimes renal is in here as the kidneys are often touched too. Usually if a child presents with at least 3 of these attributes at birth they can be given the CHARGE diagnosis. Trenton has coloboma, ear anomalies, and heart anomalies, so our geneticist was pretty certain, and the tests did come back positive.

What we didn't know back then and I learned this year is that Trenton actually carries two gene mutations that can cause CHARGE. One is common, and one had never been reported at the time of his birth. No one really knows what that mutation does except that it's not good. 

Trenton can currently see well even with the coloboma. The placement of his leave him able to see completely unlike what we were originally told. His heart has two other abnormalities that may need repair down the road, and he is currently living on one kidney as the doctor believes his other one has pretty much atrophied. His hearing is a little confusing. We were originally given the diagnosis of auditory dissynchrony where hearing comes and goes with static in between. After using a bone conduction head set though and seeing it increase his hearing ability, I would lean toward auditory processing disorder. It's similar, but rather than a nerve issue, I believe it is more of a brain connection issue. He currently has no speech. 

He is g-tube fed because cranial nerve paralysis is one of the common attributes although not a part of the acronym. One of his eyes will not close all the way, and one side of his face droops slightly. It used to affect his vocal cords for swallowing, but now we believe his inability to eat by mouth is developmental.

He does not walk, but last week he sat independently without fighting it for 30 seconds.

These are pretty much the details of what Trenton has medically wrong with him.

Thankfully, he is a really happy boy, and he can keep himself entertained so easily. I sometimes wonder how it's possible, but I believe that somehow God must give him something wonderful to think about. He's becoming more and more interactive again after losing most of that after we took him off of his heart medication. He developed Cyclic vomiting syndrome at that time too, but he now seems to be doing well with that and growing in interaction as well as we put him back on the medication for the new diagnosis.

I realize this was very informational, but some people may wonder about the details. 

Friday, May 20, 2016

When Everything's Not Okay

If I look back, I can remember the first moments of knowing something was off with my pregnancy for Trenton.  We had an ultrasound at 32 weeks. This was the one that was a precaution since our first son was born early due to low fluid, and we wanted to make sure the same thing did not happen twice.

The same thing did not, but it was far worse. The first results pointed at hydrocephalus and kidney issues. Ironically, neither of those really have been and issue. In fact, he did not even have hydrocephalus even though they measured his brain ventricles constantly after that ultrasound. 

I remember the fear and worst case scenario thinking that he might be mentally handicapped. I stayed home from church that night because I just had to sort it all out. The Lord brought me peace. He brought us peace as we went to continuous maternal-fetal specialist appointments with many ultrasounds. The more we went, the better things seemed. Most things pointed to his heart having a small issue in the aortic arch that could be taken care of with a surgery under the arm and maybe a week or two in the NICU. We were okay with that. We had been there and done that with the NICU, and it was okay. 

I had Trenton by C-section at 39 weeks. I was able to hold him right away, and then they took him away for testing. His heart was worse than expected, and they ended up going in through his chest which was a much more serious procedure. His aortic arch was almost completely blocked, and he had to be given a "transplant" arch from a baby who had died. If they had not known anything was wrong, if we had not had that extra ultrasound, it's possible he would have lost all blood flow to his lower body.

The days following this were a blur. I think we felt strong in the Lord during this time. Our most difficult day was when we were told he would not see when we already knew he had not passed his hearing tests. It was devastating. Thankfully, that eye doctor was completely wrong.

He wasn't swallowing well, so they started discussing a g-tube. I think we just felt like we were pushed forward. We took each step as it came, but I got so I couldn't sit in on the doctor's "discussions" anymore. It was just too much back then. 

God definitely carried us through these days. Trenton came home the day of my 6 week pp appointment. In some ways, those first days were easy in there own way. It is the days after you get home when things have to become normal again, and you have to try and fit your situation into the normal of life that it becomes difficult. These are the days when your faith is tested. It is the times when you are on your own to figure out something new and have to figure out the best course of action that your faith gets tried. Sometimes you make a decision, and it turns out to be the wrong one, and then you know for the next time - maybe unless it doesn't work another way either. 

Life becomes very complicated because this part of your life is so much different than most people around you. You grow weary with explaining and perhaps sometimes you just stop- hoping that no one will ask or that they will somehow just try to understand the why of what your life is today.

In all of this, you know in your hear that God's hand was there. You know that He orchestrated all things saving your son's life for a purpose. The little things become big victories. 

Things did not work out, and everything is not okay, but it's the way it's supposed to be. My son is mentally different in the very least because he cannot communicate, but God was good and still is. 

I remember the day that I thought I lost Trenton early in my pregnancy. I begged for his life before I knew anything about any problems. God gave him life and let it continue in spite of what seemed like would be the end at about 14 weeks. God's purposes were good the moment He began forming Trenton with a different genetic make-up than perhaps anyone in the world. 

The orchestration written by God's hand must contain the low notes of the cello along with the high notes of the flute in order to make music that is truly full that will glorify His name.