From the minute he was born I knew something was different with Hart. The nurses struggled to straighten his legs to measure his length. He suckled hard, shallow, and often until I bled and he spit up black.
I took him to get his lip and tongue tie released. All issues persisted. I took him to a chiropractor, cranial sacral therapy. I took him to a pediatric ophthalmologist when I noticed he couldn’t see his hands and his eyes stayed crossed longer than normal (update: he doesn’t have any vision issues and his strabismus is minor enough not to be addressed, just monitored).
Well, I knew. I always knew. I just knew…
I told our pediatrician – she said he was fine. I begged for a neurologist referral and when I got it – he said he was fine. I then begged for a neurologist who specializes in Cerebral Palsy (I jumped through hoops to get this appointment, so many hoops) and she said he might be fine. I then begged for an MRI.
Eight days after the bottom fell out of my life I put my son through an elective MRI with anesthesia.
I sat at a table with my husband for an hour as we waited for Hart to come out of the MRI. Tears gushed from my eyes as I blankly stared at the cars on the highway – but I wasn’t crying. My husband asked me what he could do. “Get me a Coke.” Those tears were for a lot of things, but mostly the unknown and mostly Hart.
Three days later Hart’s neurologist called me. Hart has minor Periventricular Leukomalacia on both sides of his brain (namely the white matter), but more so on his right. She said that this explains all of my concerns: the rigidity in his muscles, the (somewhat) delayed physical milestones, the lack of fluidity with arm and leg movements, the stiffness in joints, the weakness in his lower back, the somewhat favored use of his right side. She told me this mainly occurs in premies and since he was not a premie (he was born at 37 weeks gestation) she believes this damage somehow occurred “a couple months before he was born.” She explained that he is at risk for being diagnosed with Cerebral Palsy and will be monitored.
Hart has irreversible brain damage, it’s called PVL.
Like I said, I already knew. I immediately called Jimmy to tell him. He was surprised, which surprised me. Then I called Missouri First Steps to get him enrolled in the therapy he’d been previously denied due to only having very minor – if any – developmental delays, but now his diagnosis qualified him. I then called each one of my family members individually in order to give them the respect to grieve (because I know my son affects many more people than just my husband and myself).
That night Jimmy and I went out to dinner for the first time in weeks.
I explained to Jimmy how we are not somehow compromised or punished for having a child with special needs (whatever that may or may not mean!), we are BLESSED. I will go on about this another time but just know that I do not see his diagnosis as anything but a gift: we were chosen to take on this special person. I truly feel as if we’ve doubled down and won the underdog hand. Truly.
This doesn’t mean his diagnosis isn’t a challenge… or a little bit sad, or that I don’t feel a little bit guilty. Because yes – just yes – to all of those things.
I pray for a miracle and I grapple with how to navigate his life. Thirteen days after his diagnosis I finally put these thoughts to paper. This is a heavy challenge as a mother: where do we go from here? This is where: one foot in front of the other.
God, you’re talking to me. I hear you. Let’s do this. All of it.