Tuesday, August 23, 2016


Growing up is hard to do!
In about twelve hours, my baby will be three years old. 

His birth was a 52-hour long struggle, culminating in an emergency C-Section.  But he was strong, and the doctors were amazed at his Apgar scores and good nature.  I was the weak one, having bled so heavily that we had to stay in the hospital for a few extra days.  He refused to nurse, lost 10% of his body weight during our stay.  And then, there was the Cystic Fibrosis scare - thankfully, it was a false positive, but as he was my first baby, I was petrified at what could be.

We struggled with illness so much in his first year.  Nine ear infections alone, plus bronchial and sinus infections with them; we ended up getting tubes placed right after his first birthday.  But he was happy through and through, taking his meds like a champ and babbling adoringly at me after.  He was such a congenial baby, but he never slept well.  By four months, the hubby and I would look at each other and say, "Any day now, he'll start sleeping longer."  By six months, it was a mantra.  By ten months, we were exhausted and frustrated.  I let him cry it out too long, and still, he didn't sleep.  I remember watching the minutes tick by on the clock as he screamed for me, begging me with his tears to come help him sleep.

Year two rolled around, and our happy boy still wouldn't sleep.  But worse, the language gap that I saw forming from his first years was widening.  He wasn't talking.  I referred to EI to get him some help right before he came down with Hand, Foot, and Mouth Disease, running a 104-degree temp for several days.  He got over it just as quickly as it set in, but not even a week later, I started seeing him twitch and duck his head.  Concerned, I took him to the doctor, who referred us to the First Seizure Clinic at Children's, who did an EEG...He was put on anti-convulsants, and an MRI was ordered.  Not long after that, he was diagnosed with Tuberous Sclerosis, and our lives -- already so changed from the perfect image I'd imagined -- altered even more drastically.

This last year has been a crazy mash of therapies, tests, medications, preparations, frustrations, and love.  If anything, I'm honest here, because it's important to me that those moms out there with special needs kids understand that this life we lead is no "miracle" life...it's no "warrior's life"...it's no "special" life.  It's all-consuming, immersive, and exhausting.  But...it's also an amazing teacher of patience and perserverence.

This last year, I've learned more in how to appreciate the cuddles and kisses instead of wasting time dwelling on the frustrations.  And now, with my baby so big, going off to school in less than a month, I find myself misty with nostalgia for those days where it was just me and him in a big, quiet house, snuggled up on the couch together.  I mourn less and less for that ideal, normal life as he forges forward in the only life he knows, exploring and getting into heaps of trouble -- much to my exasperation most of the time.  It's hard for me to express in words my hopes for him, so for now, I can only say that my biggest hope for him is a good year, a seizure-free year, a year of learning and catching up, and a year where the smiles and wonder come back faster and brighter each time he expresses them.

Happy Big Three, baby boy.

No comments:

Post a Comment