“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 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