by Natalie Boese
I married when I was twenty-seven, completely not ready for kids. I knew I wanted them . . . someday, just not then. A few years later we took the big leap and decided to start trying to have a baby. The first month we tried, I didn’t get pregnant.
“Okay, what’s up with that?” I thought. “ I spent the last 10 years trying not to get pregnant and when I want to get pregnant, it doesn’t even happen? Sheesh!” The second month, I was ready, but it didn’t happen either. Or the next, or the next one after that. It took us three years to have our son Owen.
When he was born he was a dream. He was perfect, very late and really fat but in a good way, in the way only a 9 pound 3 ounce baby can be. I took to motherhood when I didn’t think it was in me.
Life was busy and I thought it was tiring . . . and I suppose relatively it was. When I was pregnant with Owen my husband told me that when we had a baby he was not going to help at night because he had to go to work during the day. I would be the sole person taking care of our baby so that he could sleep. When he had said that I was so shocked that I cried, I felt abandoned. Thoughts ran through my mind like, “What!? I can’t do the nights alone! I can’t be sleep deprived and do the days too! I can’t even deal with our puppy whining in the night, how on earth will I handle a baby?” Eventually though, I got the hang of it and my confidence grew.
We wanted a second child. Like our first pregnancy it took A.Very. Long.Time. If patience is a virtue, then I am one of the most virtuous women around. We were ready for baby number two.
Everyone seemed to be having babies all around me. Strollers, tummies and siblings were every where I looked. Never a moment went by that I didn’t feel grateful for Owen, even after I became pregnant again.
When I was expecting people asked me if I wanted a girl or a boy. I told them it didn’t matter as long as the baby was healthy, and I truly meant it. Then Rhys arrived. He was spectacular. I wasn’t worried about very much when he was born. I thought I knew what I was doing, me being a professional parent - if you counted my thirty months of motherhood. I was coasting in happiness.
On his second day, Rhys turned dark pink. We were told it wasn’t too serious, until it happened repeatedly. We asked the nurses what it could be and after showing them what we had seen, they realized that Rhys was having seizures. He was rushed down to the Neonatal Intensive Care Unit and placed in an incubator. We were at his side doing what we could, but I felt completely and totally helpless.
Like robots, the doctors watched Rhys and recorded what they saw. “Two minutes 31 seconds in length. Head turns to the left. Stiffening of the body and arms.”
I wanted to scream, “He’s having another seizure! Help him! Do something!”
The residents in white lab coats scribbled in their notebooks as they listened to the doctors do their rounds. They shuffled on to the next teeny, tiny baby with very little emotion. The heart rate monitor continued to beep. There was not much we could do but wait, and watch.
Eventually I went back to my hospital room to lay down and recover from my c-section. The staff rolled the infant crib with all of Rhys’ supplies and blankets, but he wasn’t in it. It was totally empty. As I laid there I could hear the mothers in the adjoining room with their crying babies. Their only fears were whether their babies would learn to latch, what name to choose and how to effectively swaddle their bundle of joy.
The next day I carried my empty car seat with me down the hall as I was discharged from the hospital. I had to get back home to Rhys’ older brother. Owen needed me.
I held Owen’s hand that night. Even though he was only two, it looked so large compared to his baby brother’s. Rockabye Baby, Lullaby renditions of The Cure played on his iPod while we laid side- by- side.
“Your brother is sick honey, and we’re not sure how long he’s going to be in the hospital.”
“Oh,” he said in his toddler voice. “Is he sleeping?”
“Yes, he’s sleeping now, but in a few hours I am going to go back to the hospital and see how he is doing. Will you come and visit?”
“Yes,” he said vehemently but solemnly. “I am going to be a good big brother.”
The days turned into weeks and then into months and eventually after the seasons changed we came home. We brought with us multiple medications, reams of papers, a Picc line in Rhys’ arm for his IV medication and a mountain of stress. The excitement, the telephone calls and the food stopped coming and life became a new normal.
One day as I was leaving the hospital a nurse gave me a copy of an encouraging essay called “Welcome To Holland.” It was written by Emily Kingsley about her experience of raising a child with a disability. Why were they giving it to me? My son was going to be fine. I was going to show the board of doctors who looked at me with pity in their eyes as they told me Rhys is very compromised that they were wrong. So wrong.
My husband was the pragmatic one who could understand and regurgitate every medical detail and I was the one with the hope. I was the one who made sure we had positive smiles on our faces and put one foot in front of the other, again and again until Rhys was well.
Rhys has Epileptic Encephalopathy, cortical blindness, low muscle tone and a mutation on the KCNQ2 gene. Somehow, I still thought, it’s going to be okay. He may not be the baby we thought we were going to have, but it was going to be okay. Little did I know that by seven years old Rhys wasn’t going to walk, talk, chew his food and later diagnosed with Cerebral Palsy. When they said Rhys would be delayed, I thought he might have to be held back a grade or two. It makes me laugh a little when I think about how simple my thoughts used to be.
Those early days were a blur. I remember going to endless appointments and seeing every healer there was in Toronto. Reiki, Cranial Sacral Therapy, Quantum Touch, Osteopathy, Naturopathy, Acupuncture, Medek, and Conductive Ed. I remember Owen was there. But what was he doing? Was he playing? Was he running? Singing a song? I don’t remember even though I was there with him. Where was my mind in those early years? Both of my children needed me, was I enough for both? It breaks my heart to think Owen didn’t get me at my best when he was just so darn little.
Owen is now nine. He is Rhys’s champion. He educates his school about his brother and the challenges Rhys faces daily. He used to talk about wanting another sibling, one that he could play with and “help him to take care of Rhys.” Owen hasn’t said that in a while. He seems to have taken that responsibility on, and that’s the exact opposite of what I wanted him to do. I wanted him to have fun, be carefree, play and never know what the inside of a hospital looks like or ever know how sad his mum gets when a stranger yells at us for using the handicapped parking spot because we “shouldn’t be there”.
“Owen knows too much.” I thought. “I don’t want this for him! I don’t want him to be compassionate just because he has a brother with special needs. I would rather have him be a selfish, partying fraternity jerk than have this life.” Honestly, that’s what I used to think. More acutely, I didn’t want Owen to have the burden of having to take care of his little brother for the rest of his life. When we realized what we were up against with Rhys’ prognosis it was crushing not only because our dream for Rhys was shattered but because our dreams for Owen would also have to shift drastically.
During that time I refused to see my life as a mother of a disabled child. I kept hoping it would get better and we could get “back to normal.” I realized as my kids have grown, as I have grown, that there will be no “normal” again and that’s totally okay.
Now Owen is advocating and was on the CBC talking about his brother, making an award-winning film about Rhys and KCNQ2 that screened at TIFF.kids (Toronto International Kids film festival). He has been interviewed by an Emmy winning foreign correspondent from Australia about siblings with disabilities and interviewed in magazines. Things have changed. I have changed and I believe it’s for the better.
I realize that our future is still bright, just different. It takes us five times as long to do something as simple as getting ourselves dressed and getting off to school. It’s just the three of us doing it together now and I am going to be there for both of my boys, as best I can. I am present now. Even though I am their mother, these two boys and their love for one another teaches me just as much as I teach them. I am blessed and I know it.
Natalie spends her time parenting, enjoying all things Apple, indie music, tennis and running. She is from Oakville and is currently living in Toronto with her two boys.
This story was published online, in Plenty Magazine, June 10, 2016.