At night, I’m generally pretty exhausted, but it’s not always easy for me to sleep. I lay there trying to think through all the ways my two girls could get hurt, how I could respond to each of these situations, and whether I would even be able to help them. Most of these scenarios are somehow related to their disabilities, so there may only be only a certain number of things that I can do within the realm of possibility for them. The one that keeps me up most frequently is the fear that they will fall down the stairs. You may not have the same worries as me, but you may resonate more with the fears that other moms have expressed to me:
- Will my child ever make friends or fit into a group?
- At what point will my child realize her or she is “different “?
- Will I always be able to care for my child?
- What if I see a medical issue but the medical professionals won’t or can’t do anything?
- What if the disease progresses to a point that his or her body starts shutting down?
- What will he or she do without me?
Lots of things to worry about, only so much time to think about that AND everything else. That can be exhausting without bringing in the day-to-day routines of actual caring for your child.
Well-meaning people (and magazines) who may not understand try to give helpful advice to help decrease our stress level. “Get some exercise,” “Meditate when you wake up,” “Grab 5 minutes by yourself to recharge,” “Go out on a date night.” This is generally great advice, but easy platitudes like this aren’t useful by themselves because they don’t address the obstacles that keep us from taking advantage of that advice. We don’t exercise because of our exhaustion. We would meditate if we could remember, which we can’t do because we’re so tired. And you’re joking if you think 5 minutes is going to help us feel better. If we could get about 3 days of just laying in bed, that may begin to help, but we also wouldn’t be able to because to be able to get away guilt-free because do you know how hard it is to get a babysitter for a couple of hours, never mind a couple of days? (Breathe!)
Every parent has their own set of worries. This is not a political piece on how our lives are so much harder than those with typical children. Instead, I want this to be a discussion on our levels of stress, and our lack of self-care. Since our kids need a bit more attention, and for longer periods, we have to figure out how to take care of ourselves somehow. We need a plan for support.
We may not be able to get a day at the spa, or even a full day at home to get stuff done, but we can take steps to help ourselves and our families. What government or community supports do you have access to? Respite? Social work? Family or friends? Start making a list of these just to be able to reference. Also, because our families tend to be high needs, it may not always be about getting a break. It may be more about making the everyday routine run smoother. Can you get groceries delivered? Can you afford an occasional cleaning lady? What about freezing dinners for those extra hectic nights? Sometimes, it may be as simple as taking a step back and remembering that these are our children. We take on so many roles (parent, therapist, body guard, nutritionist, teacher, etc.) that sometimes we need to relax, forget those roles, and just play with our child. Those are the memories that they will remember.
I don’t want to bring you down with this article. I do want to leave you with some hope. And here is that hope: as much as you worry, and go through your hard times, you are not alone. We all have, at minimum, this group. Please use us as a place of support. Some of us are lucky enough to also have family close by or the financial support of local agencies for respite or nursing services, and hopefully some of us have good relationships with our children’s therapist(s). And there are those who are just beginning our journey into the world of special needs parenting. To the new families, I urge you to start doing your research now so that you have the support system in place when you need it. Because you will, and that’s OK.
Submitted by Jacqueline Bair