My daughter Syona’s school bus pulled up in front of our house late afternoon. The driver deployed the lift, unlatched Syona’s wheelchair, and pushed my daughter to me. As the bus pulled away, I opened the back door to our minivan and turned Syona’s wheelchair to face the open van. Then I climbed into the van and took my seat on the floor, so we could face each other to have a snack. It was December in our north-Toronto suburb, and it was cold—not an ideal time for a picnic in the garage. But there was a good reason we were not hurrying inside—I could no longer lift my daughter out of her chair by myself.
I worried that Syona would get cold, which would make her muscles ache. I felt guilty she was not in our living room already, stretching out her limbs. But I reminded myself that this situation was only temporary—hopefully just the occasional hour, for the last two trimesters of my pregnancy, when none of our friends or family members were available to help out.
Having borderline placenta previa and a history of early labour, I had been told my pregnancy was high-risk and that I must not lift my daughter and her equipment. Syona has cerebral palsy, meaning the signals her brain sends to her muscles are misunderstood, causing tightness and spasticity. She uses either a wheelchair or a walker to get around and needs adults—strong adults—to lift her for transfers between these pieces of equipment, when she wants to move around our home and tackle stairs.
I’d anticipated needing to coordinate logistics more carefully after becoming pregnant with our second child. What I wasn’t prepared for was the impact being pregnant again would have on my close relationship with our firstborn.
My physiotherapist says I have the mangled back muscles of a retired steelworker. But the upside to all the lifting was getting a lot more bear hugs with my six-year-old than the average mom. This helped keep my daughter and I tightly bonded. Now that the lifting had stopped, I missed the bonus affection perks desperately. And worse still, as Syona’s mother, for the first time I started feeling like I was not enough.
Syona started preferring people who could assist her with ease. At first I was filled with gratitude for the help of extended family. But when my daughter started asking my sisters or my mother to do non-lifting tasks that I could still do, like read with her and help feed her, I started to worry.
Syona had also started warning me to be careful—not to bend and not to lift everyday household items like a bag of milk. That was the tipping point. I didn’t want my little girl to feel she had to mother me.
I started thinking about how to reestablish some of my old physical tasks, without putting the baby’s and my own well-being at risk. We made some small but vital changes: I started having someone lift Syona onto my lap, so I could hold her close. And we established a new nighttime routine that included cuddle time, reading and “journaling” about our respective days.
There were some other surprisingly positive outcomes to this new situation. A couple of times, there was really no other option than for me to lift my daughter, like when she told me she really needed to go to the washroom during one of our garage picnics. I wasn’t about to let my six-year-old have an accident, so I waddled into action. We figured out what Syona could do to minimize the physical exertion. “Hold tight around my neck,” I instructed her, while I grabbed her legs and held them straight instead of letting her wrap them around my waist. We made it to the washroom in the nick of time.
After Syona finished, and we washed our hands, I placed her on the ground and encouraged her to roll and scoot on her bottom to our family room. There we talked about how we’d used teamwork. She beamed with pride. We concluded that when we work as a team for emergency lifting, one of her responsibilities should always be to hang on tight and minimize any extra movements. It’s a strategy that we still use, even now that the baby is here. Syona has gained more confidence in her physical abilities and the new technique makes the lifting a little less taxing for all of us.
I thought we’d be able to go back to our usual routine six weeks after my scheduled C-section. But when our second daughter arrived at 34 weeks, that plan went out the window.
Our second daughter was born by an emergency C-section, small but healthy. However, it took the surgeons almost 2.5 hours to control the bleeding that inexplicably started after our daughter was born. My heart rate maxed out on the table as anesthetists inserted additional IVs and an arterial line to get an accurate read on my dangerously low blood pressure. I required two blood transfusions and multiple iron infusions to bring my hemoglobin up. When I was finally discharged, six days later, I felt weak and exhausted. My infant daughter remained in the neonatal intensive care unit.
I went home with a catheter to minimize any chance of permanent bladder damage from the extra stitches that had been required to stop the bleeding. I was ordered to rest and not to lift anything heavier than a baby until I hit the three-month mark. For Syona, the situation went from having to get used to lifting restrictions to having to see her mother really, really sick.
Yes, people like me can have babiesWe had a rotating door of caregivers now—not just for Syona, but for me, too. Syona didn’t like being alone with me. She was scared to look at me and even more afraid of accidentally hurting me with the extra, unexpected movements her body makes. Oftentimes my husband would bring Syona to our bed for some cuddling. As soon as he stepped away she’d cry and ask for him to take her away again.
The combination of being unable to visit the NICU as frequently as I wanted and having Syona avoid me when I was home left me feeling helpless—both physically and emotionally. I’d gone from supermom to being unable to care for my children. It was heartbreaking.
But like everything in life, that passed. A week after being discharged, I returned to the hospital to have my catheter removed and get a check up. Later at home, I was able to reassure Syona that the doctor had said I was getting better, even though I still looked exceptionally pale.
“Can you lift me now?” she asked tentatively.
“Not yet, but I will in three months, around your birthday,” I said. Then I paused before asking her about what was tearing me up inside. “You seem a little scared of being around me. Why is that?”
“Because you look scary,” she said. “And I missed you when you were in the hospital. Do you have to go and stay there again?”
I reassured her as best I could then spent the following weeks, determined to get well for her. At first when I walked, I either needed someone with me or I kept a hand on a wall in case I had a dizzy spell. But by my third week at home, I was walking down the stairs without holding the banister. When Syona saw this, she yelled at me to hold on tight and come down slowly. I told her I could go a little faster now that I was feeling better. I showed her the vitamins and supplements I took every day to help me feel better. We even had a countdown to when I’d be able to lift her, which turned out to be as reassuring for me as it was for her.
Finally that day came. The first time I lifted my eldest daughter after 11 months, her eyes widened, and her body went rigid. She held her breath. Recognizing Syona’s signs of panic, I quickly morphed back into supermom mode. Though the lifting left me a little winded, I was pleasantly surprised not to feel as weak as I thought I would, and I told her so.
“Syona, are you scared?” I asked quietly. A breathless “yes” escaped her lips. “I’m allowed to lift you now,” I said looking steadily into her eyes. “You can help me by hanging on tight. Now let’s count the steps.” We counted slow and steady to 10, and she did her part to make it easier for me by relaxing her body. We decided to keep going and even did a trip up the stairs, then right back down again. When I put my daughter down she smiled. “Mommy, you can lift me again.”
Syona’s words and the fact that all four of us were now at home together—happy and healthy—made me feel like everything was right in our world again.
While I’m not quite a strong as I was before, we’re both relieved that there are no garage picnics scheduled for this winter. And when Syona pulls me in for a hug as I’m lifting her these days, we’re not just grateful for the bonus moments of affection, we’re grateful for what we learned during my pregnancy—both of us can deal with a lot more than we ever thought possible.