Wednesday, March 6, 2013

How Uncle Clint became Jack & Wil's hero

This guest blog comes from a girl that I grew up with. Her brother Clint is a few years younger than me. He has Down's Syndrome. He is one of the happiest young men you will ever meet. He stands up in front of church and recites whole passages of scripture. When I was younger, I remember going over to their house to work with him and paint with her. I know I was supposed to feel like I was helping with Clint, but the reality was that it was meant to help me. Growing up with Clint was my first experience with someone who had special needs, the Lord knew that I would have many more to come. Enjoy this story about Clint becoming a hero.

This last summer, it was finally family vacation and we were heading up to Northern Michigan. My husband, Aaron, and I invited my Dad, Mom, and brother Clint (born with DS, 27) to come up and share a few days with us at the resort. We were all excited! The morning Dad, Mom, and Clint came up was a little cool, but the weather-man promised sun and warmer temps by afternoon. Dad and Aaron, went out to the golf course; while Mom, Clint, the boys and I relaxed in our condo until it was warm enough for a swim. After much pestering, we decided it was warm enough for Clint and the boys to swim (Mom & I would just drink coffee and talk pool side).

 Jack (just 5) and Wil (3) had already had a few swims in the "family" pool and were very used to enjoying summer fun in the pool with life jackets. Aaron, a certified lifeguard, had been giving our boys a few private lessons, and although Jack was close to swimming, he still lacked confidence. So once we got down to the pool; yes, we were the only crazy Michiganders there, as usual I gave both boys a lecture about being careful and keeping on their life jackets; then the boys and Uncle Clint waded in. (Brrr!) They squealed with delight, and I'm sure a little buzz from the weather; and then swam the morning away.

 Once Mom and I decided that they should probably all go back for warm showers and lunch, I called the boys out of the pool for me to help them dry off. Jack was first to me, because being first is more a matter of speed and brotherly competition, than just obedience. I got his jacket off, wrapped him in a towel and said, as I was beginning to wrestle Wil's jacket off, that we'd use the bathhouse restrooms before walking back... (SPLASH!!!) My eyes darted towards the sound and my heart sunk as I knew that my daredevil, rambunctious, first-born son had just jumped in to splash Uncle Clint in the "deep" 5' section of the pool! I knew exactly what had happened, the thought crossed him that it would be funny to startle Uncle Clint who was floating with pool noodles. Adrenaline and testosterone kicked in and that boy never even thought about the now absent life jacket that lay at his feet. I jumped up and my eyes met Clint's (who was startled at whatever had just splashed him) I loudly, and somewhat calmly said- "Pick him up!... Pick him UP!" Just like that, Clint reached over and grabbed Jack's flailing arm and lifted him by that one arm out of the water (like- "what? you want this?"). Jack was gasping and sputtering as he had taken in a little water on his bob under and back up. But Uncle Clint reacted very quickly, despite the shock of the situation, and truthfully, I almost felt like Jack deserved a little more of a dunking after the first second of the scare that is sure to give me gray hair early!
As I pulled Jack up into my arms and started to pat him down with a towel again. He was crying from the scare, and gasping a little as he turned and looked at Uncle Clint and said, "Uncle Clint... you saved my life! You ... are a hero! You saved my life!" (Precious for me, Clint's sister, to hear Clint's swift response so genuinely affirmed) I assured Jack that he was right and went into a long diatribe of possibilities from such a thoughtless action to further ingrain what a scary situation that could have been- if, Uncle Clint had not been right there to save the day. For the rest of that day and the rest of the summer, my boys were very quick to tell others' of the day that Uncle Clint became a hero.

Monday, March 4, 2013

MASON’S STORY: WHAT WE DO KNOW

I'm thankful for the opportunity to share Mason's story with you. After Trenton was born, I came across Mason's story because he had a couple of issues that were similar to our son's. I'm thankful that the Lord allowed me to meet Mason's mom Jennifer so that we can share each other's stories and the truth of how God is in control even when in Mason's case there are so many unknowns. It is a blessing to see this family's focus on what is True:

I am fearfully and wonderfully made; your works are wonderful, I KNOW THAT full well.
Ps. 139:14

“More questions than answers.” That’s what the doctor apologizes for every time we come in for a consult about our little mystery man, Mason, who was born with a long list of medical problems and anomalies that haven’t yet been explained.

It would be easy to focus on what we don’t know. After all, it’s been this way since before he was born....from not knowing whether we’d be able to conceive at all due to previous difficulties, then being clueless anything was wrong based on a string of normal ultrasounds, and not knowing how serious it was once he was actually born, or why he had to be transferred to the NICU on a ventilator and needing intestinal malrotation surgery the second day of life, or why he remained inpatient for the next three months though he was full term, on a feeding tube and having seizures his team couldn’t figure out how to control, all the while not knowing if he could even see or hear due to birth defects of both his eyes and ears...or why he wouldn’t grow, or sometimes, stop growing. You get the idea. We didn’t know what caused his endless list of medical complexities, from the tethered cord that’s there one minute and gone the next, to autonomic symptoms and UTIs that just won’t quit, microcephaly and thyroid problems, such a sick immune system he requires weekly infusions of antibodies and sensory problems so severe that he refuses to hold, touch, sit or roll due to his own apparent profound fear of the unknown. No one could give us solid answers about if his “syndrome” was genetic, a random problem or a result of an illness or autoimmunity during pregnancy, or any sort of prognosis at all.

So, while the unanswered questions keep piling up, we decided early on (the week he was born) to not dwell on the unknown, but rather focus on what we do know. It has helped keep us grounded for the crazy-wild ups and downs of the last two and half years.

Here is what we know right now:
God answered our prayer and protected baby Mason through pregnancy for a reason - to us it is a miracle he was not miscarried since so many other babies with similar problems do not make it even to birth. No wonder there are no other babies with his condition. God really had his hand on him to show us He was already at work!
  • God has a plan here and a purpose beyond what we can see, and He will get the glory through it all.We gave Mason his name to represent the fact he’s a "LIVING monument to God's faithfulness" - that God, the ultimate craftsman, built him to be a living reminder of His glory which we see every time we look at him. His middle name, Josias, means "God heals" (he had this name before we ever knew he was sick to remind us how God allowed me to conceive when we weren’t sure it was possible). We know these meanings aren't... meaningless! We believe Mason will live up to them in every way.
  • God has already answered countless prayers for his improvement...two of Mason's multiple heart defects (the PDA and ASD) are GONE. He did not need any heart surgery! His kidneys have also been tested and he does not have reflux of urine so his kidneys should heal eventually too. He has grown to nearly 30 pounds, when the first few weeks of his life he did not grow an ounce. He is making intentional sounds of speech to copy us, has signs and sounds for “words” he knows, shows preferences for toys, is addicted to his jukebox and my cell phone pictures, he laughs the most contagious and loving laugh on the planet, is exploring more than ever with his hands and making progress with myelination on his MRI despite early reports that his brain was shrinking! He is a smart and sweet little man with some physical limitations. It took six months for him to give us his first smile, but we would not trade it for the world—such a hard-earned gift he gives us each time he flashes it!
  • The doctors may consider him “deafblind”, but he can respond to light and focus on colored toys and even grab for them and make choices from objects so we are optimistic he can see more than they think! His flash VEP testing actually showed a “normal” just delayed brain-vision response, on an optic nerve that is 100 percent affected by a coloboma (meaning, it’s completely unfused/not formed together like a 100% disconnected cable that should be connecting a vcr to the tv). He also seems to be alerting to more sounds! Wow is all we can say!
  • God is with us to give us peace and everything else we need for each new day, "our refuge and strength, a very present help in trouble." He is in control and we can trust Him.
  • The journey ahead of us may be long, without many answers... but "though down here we may not understand, we won't let go of the Unseen Hand...for it holds the reasons why." (from the 4HIM song, Why). 
To learn more about Mason, you can go to her blog: http://masonjosias.blogspot.com/2013/02/diy-corner-chair.html