Taking Care of Caregivers: Jaclyn
Last fall, Muscular Dystrophy Canada welcomed participants to its first Atlantic Caregivers Retreat weekends in Nova Scotia and New Brunswick. This post is part of a series. Learn more about the retreat by clicking here and you can read Alistar’s story here.
Tell us a bit about yourself and the person you care for.
My name is Jaclyn Gallant. I am the mother of three children: Micah (age 7), Maia (age 5) and Myer (age 14 months). Both Micah and Myer have spinal muscular atrophy (SMA) type II.
Although both of my boys have this condition, Micah is currently the only one showing symptoms. His physical abilities are not that of a typical 7-year old: he is unable to stand or walk on his own (although he can still crawl very slowly), and he drives both a powerchair and manual chair. He is continuing to lose muscle, and we have noticed he has gotten weaker over the last few months. He requires help to get in and out of his chair, to use the washroom, bathe, get dressed, get in and out of bed, and roll over during the night.
Despite his physical weaknesses, Micah is strong in spirit. He is so smart and kind—my goodness he is kind. His heart is so special, and he has wisdom well beyond his years. He thinks a lot, and because of that, we can have some really great chats. He is happy and content the way he is made, and he has a wonderful relationship with God. He is wonderful to his little brother and has an incredible relationship with his younger sister. He also loves superheroes (A LOT!), video games, watching movies and playing games as a family, playing with and building Lego, having boy time with his dad, and drawing. He also loves to visit his grandparents and cousins, have friends over to play, and have sleepovers whenever he gets the chance.
Why did the Caregiver Retreat appeal to you?
The Caregiver Retreat appealed to me for a couple of reasons. First, I always need to connect with other people who “get” this life we are living. We have so many people around us who are wonderful and who can empathize, but very few truly “get” it.
The second reason was that I just desperately needed a break. An extreme amount of family stress had taken place over the previous year: I had our third child and was dealing with postpartum depression, and I was trying to be superwoman in every other area of my life. Asking for anyone to help with the kids is not something I do often, and I would never ask just to “have a break.” However, I felt that since this was an organized retreat through Muscular Dystrophy Canada, it was grounds to call in a favour.
When coming to the Retreat, how did you feel about leaving your children?
I was stressed about leaving all three kids with my parents. It is SO busy with the three kids: I find it difficult to keep up, and I am with them all of the time, so I did worry about how things would go for my parents.
As much as I worried about those things, though, I knew that I had to get away before I had a complete mental breakdown. Also, because I never ask my parents for help, both my kids and my parents are missing out on their relationship with each other.
How have you applied what you learned at the Retreat to your day-to-day life?
As much as I would love to say that I have taken everything that was taught to us and applied it, I can’t. It’s not that I wouldn’t want to, but it is a process to change habits.
I am MUCH more conscious of how I need to look after myself, because if I don’t, who will look after my kids? It is difficult to have breaks at certain times of the year because my husband works away for weeks at a time. When he is home, I make sure I leave the house without the kids, even if it is just to get groceries. I go for walks when I can after the kids are in bed, and I go for a drive when needed with my best friend, who lives just a couple minutes away.
I have started a new rule in my house where I have a “girls night” once a month to go away for 24 hours and have no responsibility. I have missed that a lot. I also have begun to breathe deeply, which I learned at the retreat. I find it very helpful to slow my racing thoughts and my heart rate.
All of my children benefit when I practise these things, as I feel like I am back in control of my life. There are so many things that I cannot control, but I need to embrace the things I can. I am happier and therefore the people around me are happier.
What advice would you give a fellow caregiver?
I would tell a fellow caregiver to find people who “get it” and take every opportunity you can to connect with them. To know you are not flying completely solo is a lifeline.
Do not forget who you are and what you need. Our children need us to be positive, and when we get overwhelmed from being immersed in caregiving and the stress it entails, it can wear you down. Do not give up everything that you once were before your life of caregiving began: keep what you can, and make sure they are the parts that can make you the happiest.
There will be a time in your child’s life that you may not be around to care for them. They need to know there are other people who are capable of filling your shoes. Give people the opportunity to learn how to do that. If you do not, you will never let your child have the opportunity to trust anyone else, and you will never be able to have the breaks you so desperately need.
Finally, we can only do the best we can. Looking back, it is very easy to see how we could have done something better or handled that situation differently. We cannot do everything perfectly all of the time, however: we need to cut ourselves a bit of slack and not focus on our failures.
Is there anything else you would like to share?
I remember chatting with a co-worker years ago after seeing a student with numerous health complications. I said that I couldn’t do it—I just could not handle raising a child with a disability. I did not say it in a condescending way or with disgust, but with genuine honestly: I simply did not think I could do it. Yet, here I am.
When you have a child with a disability you love them harder than you ever thought possible, and you would do anything short of selling your soul to ensure that they have the best quality of life, the best experiences that they can get, and that they are treated the way anyone else would be treated. We do all of these things for our child because of the vastness of our love for them, and we have the desire to do it at any cost—even if it kills us. The hardest part to learn is how not to let it kill you.
The next Caregiver Retreat in Atlantic Canada takes place in May in St. John’s, Newfoundland and Labrador! Presented by Lawtons Home HealthCare, and with specialist content delivered by our partnering organization Caregivers Nova Scotia, this Retreat will provide unpaid caregivers of persons with neuromuscular disorders an opportunity to relax with peers as well as to learn skills and resources that will aid in their role as a caregiver. We hope you can join us at the Murray Premises Hotel on May 27 & 28, 2017. To register, click here.