The Beautiful Life I Have
A Perspective: Parenting with a Chronic Illness
Blog written by Marisa Maese
On his way out of my bedroom, he quickly swung around, face full of joy while his sweet, rosy little cheeks showed off their dimples, “Mom, goodnight. I can’t wait to see your smile in the morning.”
He didn’t notice, but I had been crying. Not even a second before his tender and loving departure, I had wondered whether my life had any value at all. His sentiment answered that question.
My health. My disability. My diagnoses. Can sometimes skew my perception of who I am as a person. Because they like to “moon” as my friend likes to say, they can obscure my view of everything else.
I’m not ashamed of my disability or illnesses. Although, at times, I do feel a sense of false guilt or shame when I need help. Or when I have, what feels like, a thousand set of eyes on me in public. On the outside, apart from being in this chair, I may look perfectly healthy. But I’m just one of 50 million people in the U.S. who have an autoimmune disease. And unfortunately counted amongst 25% of Americans, according to the Autoimmune Association, that have more than one.
In the beginning, receiving multiple diagnoses felt like a relief because diagnoses meant that I could possibly receive treatment. But at the same time, it was devastating. Because the diagnoses also meant that I’d live with, and possibly die from, more than one incurable, degenerative, and life-threatening diseases. The year I was diagnosed was a waking nightmare. In denial, severely ill, underweight, and in ‘n out of the hospital, it felt like my life had been ripped out from under me.
At home, my husband, and two children shifted to accommodate me. I went from managing almost everything in our home, to barely managing to lift my head off the pillow. A year later, I was diagnosed with another autoimmune disease, and shortly after that, I lost my ability to walk. Our family quickly needed to make more modifications, not only in our home, but in our lives. Parenting with chronic illness is a highly unique adventure. It’s unpredictable, and matchless to any other person’s in both its challenges and triumphs.
I love this simple definition of suffering, penned by Elisabeth Elliot, “suffering is having what you don’t want, or wanting what you don’t have.” Suffering has a way of placing a big mirror in front of you. All you can see is yourself. But my diagnoses also gave my family things they didn’t want either. Their mom and wife would never be the same. Everything in their lives changed too.
Life felt like chaos. There was a mad scramble in our home to figure out how to do “life” differently. We learned what worked and what didn’t; but most importantly, we learned how to lean. To lean more on Christ, on each other, on our families, and church community. Learning to let go of the desire to control how our home functions is an ongoing task. I must constantly remind myself that things can be done just as well by others, even if they aren’t done my way. I just need to let it go.
Life can seem overwhelming if we look too far into the future, so we focus on walking faithfully, one day at a time. Because each day looks different. And plans get interrupted. I think that living with uncertainty has been one of the most difficult things for me to adjust to. I would like to tell you that it gets easier over time, but the reality is that life with chronic illness is difficult. But how you respond to it, can get better and that can make things easier over time.
I don’t know what the future holds in regards to my health, but I do know, “He doesn’t ask us to walk a path where He has not walked before.” (Amy Carmichael) So, while life is full of uncertainties, the Lord’s ability to see me through them is not one.
I seek to avoid discouragement by setting small realistic goals each day. What may be realistic for a healthy person, another chronically ill, or disabled mom, may not be realistic for me. Denial can be one of my biggest mental hurdles. So, the sooner I can accept my situation, the faster I can regather myself and focus on how to overcome the obstacle in front of me.
Social media can be a huge stumbling block, but it can also be a great tool for encouragement and ideas. Sometimes all I need to do is stop and ask myself, “How can I do this differently?” “What is most important?” “Is this the best use of my energy?” or “Do I need help?”
In the beginning, I hated asking for help. Especially from my kids, but they have proven to be such wonderful, and willing helpers. They know they play an important role in our family and their contribution is necessary and appreciated. It may not be done perfectly in the beginning, or ever, but I must resolve that’s okay… at least for some things. Teaching them to have pride in their work, a good work ethic, a pleasant attitude, and consideration for others are just as valuable life skills as learning how to properly cook a meal or do laundry.
It’s a priority for us to regularly sit down, pray, and discuss how things are going (emotionally, spiritually, and physically) as a family. Some studies have shown that children with a chronically ill family member seem to need more support or help and are at risk for developing emotional and behavioral problems. Yet, other studies report greater levels of maturity and stronger social relationships. Suffice it to say that chronic illness affects the whole family. And it takes work as parents to make sure that we aren’t just focused on our own mirrors, but cultivating a safe, loving environment for our children to grow up in.
We have found, at least in our own experience, that our children had unvoiced fears about my health and felt anxious after knowing I had a doctor’s appointment. So, we guard them from any unnecessary information that might evoke worry, then share how appointments go, and are honest with them regarding test results. It’s important that our children know that we’re not withholding the truth from them. We choose to be age appropriately transparent, so that we can teach them how to biblically process the realities that we all, individually, are facing as a family. We are thankful that our kids also know trustworthy adults they can go to for help should anything arise.
The needs of our family are different and generally require others to go out of their way to make special accommodations, so it goes a long way when friends include us; research accessibility; my diseases; get familiar with grief in chronic illness; or even go out of their way to include our kids in activities that aren’t necessarily accessible for me. Just because I can’t do something, doesn’t mean our kids need to miss out. I’m happy to see them happy!
Grief is a normal part of chronic illness and is woven into the very fabric of my life as a mom. I grieve who I once was; What I was able to do; and What I may never do in the future. A quote by John Piper reminds me that it is okay to, “Occasionally weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.” There’s nothing like that quick snap, “Mom, goodnight. I can’t wait to see your smile in the morning.” to remind me of the beautiful life I have.
