Cheryl, Katrina and Louie
I have always been a fan of Oprah Magazine's “This much I know column”. Guest writers talk about their a-ha moment in life. To me, the past few years have been full of a-ha moments, full of oh no moments and full of Thank God moments. Our little boy Louie was born with an underdeveloped brain, collapsing spine and no reflexes. He could not suck, therefore he could not feed on his own. He slept. He slept. And he slept. They told us he was blind and deaf and was having subclinical seizures constantly.
What was this new version of motherhood? My daughter was 5 when our Louie was born. When Katrina was a baby, we had a huge scare. We found out in my 38th week of pregnancy she had an absent corpus collosum. Prognosis could be normal or could be a child that never walked or talked. So we were told—“Wait and see”. She starting meeting milestones right away and at age three was discharged from neurology as a healthy little girl. Then Louie came along: Wait and see. I waited. He slept. I hugged him, he couldn’t hug back. I smiled at him and cooed. He didn’t make a sound. He slept. We just heard more wait and sees from doctors.
While he slept, we tried medicines. Medicines that had potentially lethal side effects. While he slept, he got a tracheostomy and went on a ventilator so his lungs could stay healthy and he could grow. While he slept, a doctor performed lifesaving operations on him to stabilize his spine.
But still a piece was missing. A piece that made me guilty and sad. Had I neglected my son? While getting him the best care, he still couldn’t bond to me. Was he there? Did he know how much I wanted to love him? And yet it wasn’t the same experience as I had with my crucial moments with my daughter. Did I love him enough?
During Louie’s sickest days early this year, when he was near death, with what we would find to be adrenal failure, I cried and held him tight in “our” rocking chair. I prayed to God and any angels that he might have to please take care of us. I sobbed and begged to God. Just then I felt hand on my shoulders gently rocking me from behind. An unbelievable warmth. I didn’t want my husband to see my tears and couldn’t speak but was grateful to have him there. But it was not him. He was asleep in the other room. He had a similar experience later that night before I could even tell him about mine. He woke up from watching the hockey game and saw a figure that looked like his father above him. I think on that day, I woke up. I always believed in God so much, but that Louie was so special and pure that I (truly) believe angels were sent to touch and comfort us in our biggest time of need was our wake up moment.
Louie is still sick. He still has problems. But sometime around his third birthday he began tracking…noticing sounds. A few months ago at the age of three and a half he had his first real big laugh. He started to put together some sounds. He is starting to be able to play on the ipad little games and has favorite toys. He is the happiest, purest thing I ever met. I read Kate’s post yesterday, how she feels similarly about Anabelle. How we are so lucky on earth to be touch by little angels every day. And that each sound, word or smile they give us is a piece of wisdom that is something so much more perfect that any medical milestone chart could ever describe.
Louie and big sister, Katrina