The day had finally arrived. After spending the first few months of his life in hospital, our infant child, Eric, was coming home.
It was a time to rejoice, to celebrate. What a great feeling! Or was it?
While we were leaving the barren, antiseptic world of the hospital behind, I couldn’t help but wonder, “How am I going to do this?”
Our son barely slept, maybe two hours in total, in a 24-hour day. He screamed a lot, and I mean a lot, for most of the day. After months in the hospital, we still didn’t know why he was so unsettled. “He had a rough start” was one of the explanations. So, we were going home, without any answers or any idea of what to expect. I was happy to be going home, to sleep in my own bed, to spend time with our 2-year-old other son. But that nagging question was still looming in my head, “How am I going to do this?”
I was scared. I had an infant child who screamed all day, barely slept, a 2-year-old son who needed a mother, a household to run, meals to cook, and “Oh!”, somehow, I had to take care of myself.
In one breath I asked, “How was I going to do this?” In the next breath I said, “You’ve got this, you will do it.”
Fueled with about 3 hours of sleep, I would wake up every day feeling like I was floating. I was exhausted, but the day had to get started. I could do this.
I felt very alone, and I would cry when my husband, Lou, would leave for work each morning. And the constant visits to my son’s doctor. And the continual worry about my other son. And the stress of not knowing why my baby wouldn’t, or couldn’t, settle and relax. And the continual attention he needed, because he couldn’t settle and relax. And that I didn’t take a nap because he didn’t nap and even if he did nap, I wouldn’t nap, because my 2-year-old son needed me. And that while everyone else was at work, I was home, alone, with a screaming baby. And yet, every day, I said to myself, “Keep going, you can do this.”
And keep going I did. I had to. I had no choice.
Sure, there were support people in our lives who provided a listening ear, therapy and treatment. We had about 8 hours a week of in-home support. Let me repeat that, 8 hours a week. My parents helped a tremendous amount. Thank God for my parents. Lou and I developed a system of sharing the load when he got home from work and a system of sleep sharing, so that we could at least try for 3 or 4 hours of sleep each night. Three or four hours of sleep…aren’t there studies on sleep deprivation?
We did this for over 3 years until I said, “I don’t know how we can keep going?”
As a result, a referral was made to our local community access center. When asked what kind of support I needed, I said, “more in-home support”. So, we were blessed with another 5 hours a week where a nurse would come to take care of our son, and we could take care of ourselves. Or make dinner. Or do the laundry. Or cut the grass. Or if we were really lucky, take our other son to the park.
It didn’t take long for the nurse to recognize that we needed more help. She asked if we could get it and if we could have someone come in at night so that we could sleep, because she realized, we didn’t sleep. The response was that more in-home support wasn’t possible and relief so that we could get sleep, unheard of. You see, as parents, we weren’t ill and so there was no medical reason for us to get support, especially to sleep. My answer, “if you don’t provide the funding to have someone help us so that we can sleep, you will be providing a heck of a lot more funding in the future, to take care of us when we break down.”
We received relief so that we could sleep, one night a week.
After a few weeks, we were offered an additional night and after a month, we were getting 4 nights of sleep a week. And we were grateful for that.
We kept going and before you know it, ten years had gone by. Things had settled down somewhat. We were sleeping about 4 hours a night. We had a bit more in-home support. We managed to take breaks and I was able to work a few hours a week. I co-founded a small organization to support other parents and to teach others by teaching about a parent’s perspective. Around the same time, we decided to have another child. Talk about fear. “Would this happen again?” If it did, “how would we ever do it?” Fortunately, our third child was healthy, no issues. “Thank goodness, because, I don’t know how we would have done it.”
And then, our other son’s health began to decline. He had aspiration pneumonia and was very sick. We almost lost him. I won’t even begin to go into the details of the heartbreak and sadness we felt. I will simply say; it was a very stressful time. By some miracle, our son pulled through. But there were limitations. He wouldn’t be able to eat anymore. He had to have a g-tube inserted and that’s how he received all of his nutrition. Nothing by mouth. Nothing. Can you imagine how difficult that was for him, not to mention for us as his parents? But we were committed to do whatever it took for him to stay healthy.
In the midst of all of that, my mom was diagnosed with colorectal cancer. Three years later, after a couple of surgeries and lots of pain and suffering, she passed away. A year later, our son passed away, just before his 15th birthday. Six months after that, my sister-in-law, at 45 years of age, one of my best friends, unexpectedly passed away.
I kept going. I wanted to keep going. I loved life and all that it had to offer. Despite all of the loss and difficult times, it was important to me to keep going. I got a full-time job, something that I had wanted to do for years. I felt a sense of opportunity. I could contribute more to others. I was happy.
Then, my dad was diagnosed with chronic lung disease along with a small tumour on his lung. “What?” Here we go again. It was so difficult to watch his decline. A man who had been so physically strong and who loved to socialize and who adored his grandchildren and was so happy to be part of their lives. It was sad to hear him say, “I am not afraid to die, I am just sad that I won’t be around to see all that they do in their lives.” And how hard it was to watch him struggle to breathe in the last weeks of his life, knowing how much he wanted to stick around.
“You’ve got this”, I told myself.
I remember sitting at the kitchen table, trying to eat breakfast before I went out to volunteer with some colleagues. We were helping to raise money and promote literacy for children. I wanted to go, it was important, and it was going to be fun. But my head felt so heavy and I couldn’t keep it up. I was emotionally exhausted. I remember too that my body felt so tight and that it was challenging to move.
I tried to go on, I truly did. “I’ve kept going for so many years, what’s another challenge?” Piece of cake.
Not this time.
People would remark about how tired I looked and hinted that it was important to take care of myself, that a job would be there in the future, but my health, if I didn’t take care of it now, it may only get worse.
In my heart, I knew I had to take a break. My body was telling me that I had to take a break. My emotions were affecting my tolerance of people and public places. Something had to change. This wasn’t who I was. After much deliberation, I told myself, “You’ve got to take a break.”
So, I did. It was a difficult decision to make but probably one of the most important decision I had made in my life time. I was taking care of my mental health. I needed to take a short pause, a brief hiatus, to rest. And I am so thankful that I did.
May is mental health awareness month and for that reason, I thought it was appropriate to share my personal story. Why? To let you know the importance of taking care of your own mental health; to be aware of how you are feeling and how what is going on in your life, may have an impact on your health. I also want others to know that someone in your life may be feeling exhausted or may be feeling like they can’t go on. Physically, they may not look like they need your support, but mentally, they do. It can be difficult to recognize. Please pay attention. It’s critical to have the support of family and friends and my wish is that people have love and understanding around them. Governments need to invest in mental health so that we can have a healthy society and one that is driven by empathy and compassion.
We are resilient and we can keep going in many situations. Sometimes however, it’s important to take a pause and listen to what your body is telling you. Each of our lives is valuable. Value your life and take care of yourself. Ask someone how they’re feeling and genuinely care about their answer. Take a break if you need it.
Be honest, be open, be vulnerable. Ups and downs are normal. It’s about being human. It’s who we are.
Let’s begin to place emphasis on nurturing and supporting each other. It’s a critical step toward our mutual strength.
We’ve got this and together, “We can do it!”