Negative. Mayo Clinic has deemed the results negative, but did acknowledge an elevated level of glycosaminoglycans. They believe this to be from contamination, or could be a sign of some other disorder. So though the answer is not a perfect and resounding “NO!” it is more of a “Almost assuredly and mostly no.”
You would think I would have jumped for joy, but instead I felt immediate fear. What if the elevated levels mean that he actually does have Hurlers?! What if we have to repeat this test?! I CANNOT WAIT AGAIN! I will kill myself. I will jump in front of a bus. I will die because I cannot take one more ounce of stress. These thoughts were immediately followed by more fear that by me saying ‘I can not take any more’ that I was issuing a challenge to God to give me more pain and anguish to prove that I can take it. Cynical, I know.
I put too much faith in science and logic and exactness. Jesus knows that about me, and He wants me to trust in Him whatever the outcome, and I struggle with that–with saying, “Whatever the outcome, I love and trust in You.” Because a part of me, the sinful part, does not feel that way. I love Jesus when I receive His blessings and goodness, and I often lose faith in Him when “it’s not fair.” Jesus knows this about me. So, I believe He gave me a lab result that wasn’t quite perfect. And I reacted predictably–in simultaneous relief and despair.
I am reminded of John 11 account of Lazarus. Jesus loved Lazarus and knew he was very, very sick. Despite this, Jesus stayed where he was for 2 days and said (paraphrased), “This will not end in death, but this will be for God’s glory, and God’s Son will be glorified through this.”
Y’all. Lazarus died. He had been dead for 4 days by the time Jesus came into town. Lazarus’ sister Mary told him,”If you had been here, Lazarus wouldn’t have died!” And then Jesus opens the tomb of a dead man, tells him to get up, and he DOES! Like a mummy, Lazarus walks up out of the tomb. Seriously on the mummy part. John 11:44 says his hands and feet and face were wrapped in cloth 😱
What I’m trying to say, and probably failing at, is that God rarely gives me expedient, nice, and tidy answers. He gives me halfway answers, prolonged waiting times, and frustrating questions. I forget that an answer of “maybe” is not the same as a hard “no,” and sometimes I forget to be grateful for that. Jesus is working for something huge, here. Bigger than huge, even. My despair is caused by putting my faith in the world instead of the One who created it. Shame on me. Jesus is healing my baby. I’ve seen proof of it over and over again, and I still doubt. And today, He answered our prayers. Thank you for your prayers. I am blessed beyond measure by those who love and pray for me and my baby.
Clark is an overcomer, and we are mighty when we unite in prayer. Love to all ❤️
EDIT: I was hesitant to submit this update because my pediatrician wanted to talk to geneticist to clarify the confusing results. I decided to believe in the negative result. I pressed submit and my pediatrician called me immediately. He said that the Mayo Clinic geneticist said the elevated level was from craniosynostosis and NOT Mucopolysaccharidosis. You will never convince me that wasn’t Jesus. 😭👏🏻🙌🏼❤️
Rayner Shine 