Where do I begin?….
Well first off, you should know that I had a perfectly normal pregnancy and knew nothing of any special anything. I enjoyed being pregnant and chasing my toddler around. I rocked a bikini at the pool all summer with my big huge belly and loved it. I was induced due to high fluid. And I cried because I wanted and all natural labor and delivery.
We went in and had sweet baby Ollie on July 28th, 2009.
We were waiting to take Ollie home and had eagerly been checking off the big long list of things that have to be checked off before you leave the hospital. Our last check mark to get was from the pediatrician. But when she finally came to our room, she looked him over and was skeptical about something. He looked healthy and had a decent apgar score….however she was concerned about this ‘pose’ that he kept striking. Maybe he was choking on liquid from the womb….or maybe he was having a seizure….? It was enough of a question mark for her to send us to the NICU (Neonatal Intensive Care Unit) for further testing.
In our first day at the NICU he had an ultrasound performed on his head to check for seizures….great news! No signs of seizure activity. However, it looked like maybe he was missing a small portion of his brain called the corpus callosum. Huh…. We would need further testing.
While we awaited the MRI scheduled for the following day we were greeted by doctors who would explain to us what ACC (agenesis of the corpus callosum) is. It’s really simple you see….. We were told “If your child has ACC it could be a wide range of possibilities. Maybe Ollie will just need a special reading group in school. Or…. maybe he will never do anything ever on his own…no swallowing… no rolling over… no sitting up… maybe nothing ever.”
After the MRI confirmed his ACC we had some genetic testing sent off and were given very detailed instructions on how to care for Ollie. “Take him home and love him,” they said. And over time we would see what this little guys life would be like. To this day I can’t believe that parents are given this sort of news every day. How do you go home? What do you do? How do you get up the next day? What information do you need to keep moving forward in a healthy direction?
With lots of love and support, we did all of those things. We got up. We loved him. We played with big brother Taylor. We sang to him. We loved the snot out of him! We found out at 3 weeks that he was missing a part of his 13th chromosome… a very very small part that would affect how his body was created. We loved him some more. Grandma practically lived at our house during that time. More love….
But something was horribly wrong…. He seemed to get progressively sicker. He was throwing up all the breast milk I could get down him. He nursed fine. He had plenty of milk. But he just couldn’t keep it down. I saw everyone. I had him weighed weekly. The pediatrician had me driving to Portland to see geneticists. I was begging to be seen by someone who could figure out the throwing up issue. But the pediatrician was stuck on genetics…
Unable to get any further with that pediatrician, I searched for others and miraculously (really I think it was) we got into a different pediatrician. She had 10 minutes for us. Could we make it there in an hour?
My dad met me there with little frail Ollie. By then he was beginning to look like Golem from Lord of the Rings. His skin was grey and saggy. He was almost hollow looking….Except for his eyes. He always always had fighting eyes.
Within 10 minutes our new pediatrician had us sent to the nearest hospital. Within 3 hours of being there, we were rushed by ambulance to the nearest PICU (Pediatric Intensive Care Unit), 2 hours north. She didn’t know how he hadn’t died. His levels of sodium and potassium were so off, he should have been having chronic seizures and heart attacks. Her best guess was that it had happened so slowly that his body kept adjusting to handle the imbalance.
We stayed at Doernbecher in Portland, Oregon for eight days while they figured sweet Ollie out. We saw every specialist under the sun and because it’s a teaching hospital (and we were such a special case), we saw the doctor’s teams of students. Our room was always packed with people. To explain it simply, Ollie had some problems with his kidneys and some parts around his kidneys. The parts were fixable with surgery when he turned 1, but until then he had to stay on anti-biotics. We went home on day 8 with a feeding tube and soooooo many medicines. And lots and lots and lots of follow-up appointments. We would continue to see the optometrist, eurologist, nephrologist, geneticist, audiologist, nutritionist, and maybe more… Needless to say, there were SO. MANY. -ISTS.
It took some time to figure out Ollie’s many complex needs, but where we eventually landed was that he has a global developmental delay. He’s deaf. For some time we thought he was blind, but it turns out he can see. He has numerous abnormalities that keep us on our toes and going to doctors. But at this point in his life, he’s stable. He’s healthy. He’s been learning to walk. He uses ASL to express himself and can hear with cochlear implants. He’s sweet and joyful and kind. He has the cutest humor and he adores babies.
I get stopped daily by people who tell me that Ollie is such a delight.
Somehow, he touches this world in a way that “normal” people (whatever that is!) can’t. And for that I am truly, genuinely grateful to be his mother. What an honor…
I cannot even begin to list all of the countless ways that Ollie has enriched our lives and what a blessing he is. Are there days that he drives me crazy? Absolutely. Do I get angry when trying to parent him? Sometimes… But overall, this time on earth is going to be so short. Because of Ollie, life is beautiful and messy and fulfilling.
If you find yourself trying to raise a special kiddo right now, I encourage you to sit down with them and play. Go get ice cream if they can eat it and simply look them in the eye. If it’s going to be loud and they’re going to make a scene, let them. These kids are serious miracles and a gift to our society. The world will be inspired by the love and the hope these guys possess.
There are days that I tire of people looking at us. I want to just live my life in the quiet shadows and be unseen. But when given such a light, it’s impossible. These little lights are going to shine wherever they go.
The lyrics to “This Little Light of Mine” comes to mind when thinking of these kids…
“This little light of mine, I’m gonna let it shine… This little light of mine, I’m gonna let it shine…This little light of mine, I’m gonna let it shine…let it shine, let it shine, let it shine!!!”