By Sue Anganes
Not only have the past few months been ultra busy, they have also been ultra stressful. Between multiple doctors’ evaluations, medical procedures and day-to-day life, I have barely had time to catch my breath. Having a child with a chronic, debilitating illness often leaves me exhausted, and somewhere between depression and grief. As a mom, my natural instinct is to try to fix everything that is wrong, but for the past nine years, not only can I not fix the problem, the problem is getting worse.
My thirteen year old son, Ray, has an undiagnosed neuromuscular disease. Every physical task is hard for him; from brushing his teeth, or sitting up in a chair, to walking. For some unknown reason he is losing all his Type I muscle. At this point, his body consists of 80-90% Type II muscle. Most people have approximately 50% Type I muscle and 50% Type II muscle. The Type I muscle that Ray is lacking is the muscle that holds his body upright and allows him to stand. Both sitting up and standing are getting progressively harder for Ray to do. He also has chronic pain because the Type II muscle that he does have, is always straining to do the job that the missing muscle should be doing. Ray uses a wheelchair when he is outside our home and also has an electric scooter that his dad designed and fabricated for him to get around outside (dirt trails and grass) where a manual wheelchair can’t take him. For the most part, Ray is very accepting of his limitations and deals with life as it comes. Doctors have told me he has a very good attitude considering what he deals with, and I agree.
Since this is a mom’s blog, I thought I’d discuss the struggles that I have, as well as many of you may have, when dealing with a chronically ill or disabled child, and tell you some of the things that I do to help me cope with the stress. Disabilities come in many forms: physical, emotional, mental, behavioral and, no matter what the issue is, the toll it takes on you as the mom is tremendous. There are endless appointments for doctors, therapists, educational specialists; not to mention the extra effort it sometimes takes just to get out of the house with special equipment. There are medications to remember, tears shed over the loss of abilities and future dreams, occasional aggravation from those who give us unsolicited advice, and isolation that comes when others just don’t understand the hardship because they haven’t walked in our shoes. These are things that cannot be changed, and somehow have to be embraced as the norm of life. There are, however, some very practical things we as moms can do for ourselves to help us cope.
One of the most important things that I feel has helped me is to get plugged into a network of other women who have similar issues. I have been part of a support group for moms of kids with disabilities for the past couple of years. We have a “mom’s morning out” group that meets once a month during the school year. The moms I meet with have children with a whole spectrum of different disabilities, but we all have the same common thread of loving our children and wanting the best for their lives. Being part of this support group has not only allowed me to develop new friendships, but it has truly been a benefit to my mental health, reminding me that I’m not alone and that I have someone there to listen to me.
Support does not have to come in the form of a monthly meeting. It can come from a church family, an online discussion group, extended family members who are willing to listen and help, or a doctor who has a genuine interest in your child. Even Facebook seems to have a group to support just about every issue out there in life. Searching out the right group of people and then connecting takes away that feeling of being all alone in the situation.
I have also come to realize that I also need to take care of myself. There are days when I just need to dig myself out of a pit and that’s hard. One thing that seems to help me is to get outdoors. Either a walk or weeding in my flower garden can do worlds of good for my mental state. Just having a quiet time to think is often therapeutic. Sometimes I like to put in my ear buds and listen to music or a podcast to take my mind off things and relieve some stress. I know it’s often impossible to get away by yourself when you have younger children, but sometimes going to a park for a picnic or small hike can do worlds of good. Somehow exercise and being outdoors always benefits my mental state.
The most important part of taking care of myself has been taking care of my spiritual self. For me it involves reading my Bible, praying and thinking about all the promises God has for my future. If anything lifts me out of the pit of depression and weariness, it is my time talking to God daily in prayer. The Book of Psalms speaks to anyone who is weary in life.
Once a year, for the past eight years, my husband and I have gone away for a weekend. That was not an option for us for many years while most of our children were young (the first twenty years of our marriage it was impossible), but recently it has been a great way for us to step away from the responsibilities at home and refresh our minds.
Friends of mine have flung themselves into fundraising for various organizations that research their child’s particular disease or disability. By putting their energy into supporting the organization, they not only work towards a hopeful cure for their child, but they also direct their minds in a positive way, and I’m sure that helps them through their difficult journey.
I would love to hear from other moms who have children with disabilities and would like to have someone to talk to. You are welcome to message me on Facebook or post your email address and we can talk that way. It is very hard when you feel alone when caring for a special child. Knowing you are not alone makes a world of difference and helps us to do the best we can for our children.