Resilience, Patience and the Strength of Family

Hi my name is Barb. My husband Simon and I are the parents of five amazing young people. Chloe is 19 and off learning about forensic science at University. Our triplets; Zachary, Aidan and Aaron are turning 12. And our youngest, Kate, is almost 11.

Our boys had a rough beginning. They were born at 31 weeks, weighing between 2.5 and 3.1 pounds. A woman's body is not meant to carry 3 babies at once. I spent almost 2 months in the hospital on bedrest at Women's College Hospital. I am an active person and I don't like to sit still. I did my own rounds every day, chatting with the other prenatal moms who came in and out of the hospital while I stayed on and on. I knitted many hats. I watched the entire collection of Grey's Anatomy (at the time it was only 8 seasons). I cleaned the storage room in frustration one day while the nurses begged me to go lie down. I looked forward to the daily jokes my father-in-law sent me. Anything to keep the worry out of my head.

During this extended stay, we discovered through ultrasound that Aidan had a cleft palate. We googled it. We tried not to stress. It was only cosmetic after all and we knew the team at Sick kids knew how to repair it. Our kids would be okay. Women had babies all the time.

We weren't prepared for how tiny the babies would be. How fragile. That they would need help to breathe and to eat. When the boys were born, I didn't get to hold them right away. My team of doctors had to close me up and make sure all was okay. Each baby also had their own team of doctors and were quickly whisked away to be hooked up to the lifesaving machinery that they needed to survive. I counted my blessings and said a silent thank you, grateful that we live in this country, where there were hospitals and staff to help my babies.

I didn't get to see the boys till the following day, through the glass of the incubator with all the tubes and wires connected to their tiny bodies. Chloe stopped by to visit and help us name them. At 7 years old, she needed to determine which identical twin looked more like an Aidan, and which an Aaron. Simon and I leaned hard on each other during the six weeks it would take till the boys could leave the NICU. We grew even closer. We concentrated on learning how to feed and care for our children so we could take them home.

We needed to learn to feed Aidan differently. He had in fact been born with both a cleft lip and palate. The roof of his mouth, his gum, and his lip just hadn't grown together in the womb. He required a bottle called a Haberman as the latching and sucking required for breastfeeding just couldn't happen for him. We quickly mourned this loss and moved forward.

Slowly, the boys grew. They produced tears (something they were too small to do initially), they started to eat without the use of a feeding tube. They were slowly weaned off the caffeine that prevented them from a sudden stop in breathing. They passed their car seat tests. After staying overnight in a room beside the NICU to prove we could care for our babies, eventually first Zachary, then Aidan, and finally, Aaron was allowed to come home. I remember the fear that Aaron wasn't ready and that he would stop breathing on us once home and I wouldn't know what to do. It was terrifying.

While we were in the hospital Zach had a head ultrasound that showed PVL. Periventricular Leukomalacia. More googling. The white matter in his brain was damaged. The doctors told us this meant he would have Cerebral Palsy. Google. We looked at our handsome boy who looked just as healthy as all the little boys in the NICU, who looked up at us and seemed interested when we chatted with him and we decided the doctors were crazy. I had a picture in my head of our cute triplets running down the soccer field together and this did not fit with my plan. Our child was fine and I didn't feel I needed that negativity.

So off we went home and the next few months were a whirlwind of trying to sleep and bathing and charts of who ate what and when they went to the bathroom, and family visits and RSV needles and eye checks and ear checks and weight checks and inoculations. We started at the Sunnybrook follow-up clinic for preemies and there was more talk of Cerebral Palsy and wheelchairs and feeding seats and I tuned it all out. We were busy scheduling Aidan in to get his lip repaired. The start of many, many surgeries and a lot of googling for our little clefty.

"D-day" is a term shared by special needs parents. It refers to diagnosis day. The day someone confirms what you already know deep in your heart, something is not quite right with your child's development. For me, D day came later, after I had already been told. It came when the other two boys, the exact same age boys started to roll over, hold their heads up and sit up. But Zachary did not. That was hard. I mourned for Zach. For all the wouldn'ts and couldn'ts and differences. For the appointments and equipment and therapies and the uncertain future. I worried about teasing. Would he find a partner later in life, would he be able to get a job? Most importantly, would he be happy?

At the same time, we discovered I was pregnant again. Kate was on her way, a plan all her own, and we had to prepare again for change. Almost exactly a year after the boys she made her appearance. But first, she sent me back into my old ward at women's college hospital for 3 weeks with broken water, trying to keep her in while Simon juggled babies and work and visiting me to keep me sane. At 32 weeks she arrived 4.1 pounds. Huge and healthy.

We leaned hard on our family and friends during the early years. We ended up losing some friends who weren't up for the journey but the ones we gained are like family. We needed each other for advice, information, and encouragement. We needed our peer group of TPOMBA parents. It's ridiculous how excited I get about the Twice Loved Sale, a chance to sell and buy the next season of clothing, but more importantly to hang out with my friends for two days. Other parents of multiples trying to balance everyone's needs, other special needs parents who get the journey.

Fast forward a few years and we have overcome. We have learned how to fight for what our kids need. We advocate. We don't give up. Sometimes we are sad, sometimes we have a bad day, but when we do we are up the next day fighting even harder to get our special needs kids what they require to excel. We know all the back hallways and shortcuts through both Sick Kids and Holland Bloorview. We can't walk through a hospital hallway without running into a doctor, therapist, or fellow parent we know. We visit often, normally weekly for one appointment or another.

Our children have taught us about resilience and patience and the strength of family. All five of our children know how to speak up when something is not kind or does not include everyone. They won't leave anyone behind. They have more responsibility than most, they all know how to give Zach his meds and take off his AFO's. They help him pack his lunch and prep his breakfast. They've seen Aidan at his worst recovering from his multiple surgeries. They know how to clean his hearing aids and replace the batteries. Most importantly, they know how to love and support each other. We won't always be here for our children, but we know they will always be there for each other.

Barbara Rayment