Mothering while chronically ill can be difficult, but I've found ways to adjust. Creativity rather than activity now fuels our family.
"Mommy, do you remember when we lived at our old house and you weren't sick all the time?" my 5-year-old asked sweetly while his bright-blue, puppy dog eyes met mine. He looked sad.
"I remember, sweetie," I replied, trying desperately to hold back the bucket of tears welling up behind my eyes.
"I miss my old mommy; that mommy used to play with me. Do you think your sickness could go live with someone else now?" he asked.
"I wish it could, pumpkin. I so wish it could," I said, as I wrapped my arms tightly around him and he nestled his head into my chest. The tears that I was trying so hard to hold back fell gently onto his white hair. My son used to hate cuddling, but with the gradual decline of my health, I find him nudging me several times a day, waiting for an invitation to occupy the space on my lap. Adjusting to life with several chronic illnesses while mothering three toddlers has been an unexpected and painful journey.
I've always been active and on the go. Motherhood didn't change my adventurous spirit and busy lifestyle; in fact, it enhanced it. My husband is the same way. We are, undoubtedly, adrenaline junkies. The week before our wedding, we jumped off of a bridge into a lake that was at least 30 feet below. Our love of spontaneous adventures shows through crazy experiences we've had, such as rappelling waterfalls, zip-lining through rain forests and jumping out of airplanes. When we had our first baby, the spontaneous, adventuring didn't stop. Our now 5-year-old was 3 weeks old when we hiked him up to the top of his first mountain.
My two eldest sons have always seen me as a fit, active mom. They're used to me running, jumping, climbing, and playing with them constantly. However, after giving birth to our third son a little over two years ago, my health slowly and steadily began to decline.
This past year, my body has experienced significant physical limitations that affect my ability to parent. I can't always get on the floor and play with them. I'm rarely able to hold them anymore. The guilt that accompanies my inability to physically participate in most activities with my children is relentless. My incessant physical pain wears at my patience and tolerance, bringing with it a seemingly permanent state of irritability. I am not the mother I used to be, and my children are undoubtedly affected.
I once talked to my therapist about how annoyed I was that my boys ask me to jump on the trampoline every single day—multiple times per day, if they know I'm not feeling well. She brought up the idea that maybe my boys, especially my eldest, use the trampoline as a gauge for my wellness.
If mommy can jump, mommy is okay. If mommy can't jump, I should be worried.
My therapist suggested I make a calendar that counts down days until I can jump. I have been setting aside a day every week or two that I allow myself to jump. The boys love to help me create the calendar and are excited to check off the day each morning. It helps to eliminate their anxiety over how I am feeling and provides hope as they anticipate the day with the star on it.
After my therapist gave me that idea, and it worked so well, I began to shift my parenting approach. I no longer focus on what I can't do but rather what I can. We have started painting together; the repetitive motion is therapeutic for me, and the boys enjoy creating in their own ways. We use kinetic sand and Play-Doh often and connect through conversation while we're playing. We have also started to bake together. The boys love to help out in the kitchen and their participation allows me to sit back and watch.
The days when my pain is manageable, we take full advantage. We adventure—we climb trees, take walks, play at the playground, wrestle, and race. And days when I can't get out of bed, they come to me. We read books, watch movies, snuggle and tell stories.
There are days, like this morning, when my family feels the weight of living with a chronically ill mother; days when my boys tell me how much they miss the "old me" and how desperately they want me to be well again. My heart aches to fill their longing for a healthy mom. We talk about it; we cry together; I let them get mad at me. I know that they're still processing it all. They don't have the depth of understanding my husband and I do; they're still confused. The best things I can do in those moments are to provide them with a safe space to feel and to hold their hands while they walk through the process of adjusting.
I used to believe having a chronic illness meant I couldn't mother my children well. It doesn't; my illnesses aren't robbing my children of their mother like I once thought. Chronic illness doesn't mean I have to watch from a distance as my children grow and experience life without me. It's an invitation to connect with my kids in different ways. My illnesses have opened the door for deeper communication and more constant affection. Our family is learning to adjust; creativity rather than activity now fuels us. And the one constant through it all, what keeps us all going on even the hardest of days, is the laughter.
Chronic illness can take a lot of things from me, but it will never take away the bond with my children or the laughter.
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