When Crohn's Disease Pounces on My Life as a Single Mom
Although a lot has changed, well mostly I have changed, in the almost four years since my separation and divorce, one thing remained my constant priority. No one will hurt my little girl as long I was around. I was, and always will be, her protector. She would not experience pain, strife, disappointment or sadness while on my watch (unrealistic, I know). The past few years has been a journey of self-transformation and transition, from a traditional family unit, to co-parenting; from fear and trepidation, to determination and confidence; from remaining silent, to finding my voice. It was my hope that by observing my personal growth and determination as I transitioned from mother and wife into the role of single mom, that my daughter would learn never to be afraid to speak her mind and express herself, and just to be happy in each moment. I did my best to help my daughter navigate these changes in a healthy way, and I think she transitioned pretty well. Little did I know that my role as protector would be challenged by the one who was supposed to do the protecting… me.
I was diagnosed with Crohn’s disease (a form of irritable bowel disease along with ulcerative colitis) in February 2001, and over the years have had several complications, surgeries and hospitalizations. This disease is chronic. It never goes away. It’s always lurking in the background, ready to pounce like a cheetah on its prey. It happens quickly, with no warning, and before you know it, you’re explaining your history to another ER doctor while praying the pain meds kick in before you vomit in the mauve-pink basin. Sometimes you hear the whispers of nurses and doctors not completely familiar with Crohn’s… “She’s back again…” Cancelled plans become the norm, and big events or trips are always tricky and met with trepidation.
Don’t get me wrong, I have great doctors who are working fervently to help not only me, but all the other warriors who have IBD. But there’s always a lingering pang, or a day where I’m in the bathroom more than any other room in my apartment. I’ll have a few good days, almost enough to fool me into thinking we’re on the right path with meds. Maybe this time is different? We got it right this time and I can make that trip that I’ve so been looking forward to for months. But then there it is…the knock. I try to ignore it and go about my daily routine. The knock gets louder and harder to ignore, but still I try, all the while whispering “No, not again.” Then I’m stopped in my tracks… and the cheetah pounces.
There’s no ignoring the cheetah once it’s attacked. I make the call to my friend to give me a ride to the emergency room and arrange for my daughter to sleep at my mom’s so she can bring her to school in the morning. Then I sit my beautiful angel down on the couch with the familiar mask of ignoring the pain so she’s not so scared, all the while looking into her big, wonderfully loving eyes, knowing that she, too, heard the knock and knows the sound all too well. She heard it while we did her homework when I sat with my head on the table while she read her sight words to me. She heard it when I was up and down, in and out of the bathroom, while watching TV. She heard it when I laid on the recliner with my eyes closed because I had no energy to do anything else, trying not to wince with each stab of pain, while she played on her tablet. And as I sat her down, I could see in her tear-filled eyes that she knew the conversation that was coming all too well, and wasn’t even slightly surprised.
You see, this year has been particularly challenging with two major surgeries and multiple hospitalizations due to complications. More meds, more changes, increased weakness and lethargy, dramatic weight loss and lack of appetite, attempting to maintain my apartment while out on disability from a job I loved, while desperately trying to create and maintain some semblance of normalcy for my daughter (I am fortunate to have a large web of support in family and friends who have made this juggling act even remotely possible).
So there we sat on the couch, mother/protector and daughter. Her eyes well up with tears as I begin the familiar speech. “But I don’t want you to go back to the hospital,” she whispers as the tears break free and run down her cheeks. My heart breaks for my little girl. That pain in my heart and the guilt is worse than the pain in my stomach, which feels like the scene from the movie “Aliens” when the creature rips through the person’s abdomen. I attempt to reassure her, “The doctors just need to see what’s going on and change my medicine to help me feel better.” “OK,” she reluctantly relents. We hug, we cry, we love each other. I kiss her head, her nose, and the tears on her cheeks. I chastise my body for doing this again.
But mostly, I grieve. I grieve for my daughter and that her childhood is marred by my disease. That during these times when I’m hospitalized she’s shuffled to school by my mom, picked up by my brother and watched by my best friend all in the same day. It should be me doing those things. I should be packing her lunch and checking her homework, cuddling her in bed as she falls asleep. Instead I’m on a gurney again, foggy from the pain medication that gives me a false sense of temporary relief. I call to say goodnight, “I love you to the moon and back. Muah (throwing a kiss through the phone),” I say. I can hear her enthusiasm since she’s spending time with her cousin who is more like her sister, “I caught it! I love you, too. Feel better and come home soon… please,” she pleads. It’s not until the “please” that I hear the slight crack in her voice. My heart breaks again. Not because I’m sick, although it’s no walk in the park. I can handle the pain, the procedures, the side effects, the exhaustion, the lack of appetite. It’s the lack of control, my desire to protect her from all of this and my role as protector, has yet again been disrupted by the knock. Previously I said that with me on the job as her mom, she would not experience pain, strife, disappointment or sadness. Yet to know, recognize and accept, that sometimes because of my illness, she has experienced all of those things, has been the hardest pill to swallow… and trust me, I’ve swallowed plenty.
When I’m finally discharged home from the hospital and walk back into our home, we hug like we’re never going to let go. Yes, she visited me while I was there, but it’s not the same. I was home. She looks at my arms, and gently rubs the bruises from frequent blood draws and IV changes. “Did it hurt?” I lie, “Not too bad.” Relief washes over her face, but she keeps rubbing the bruises. My mom (an angel through all of this), is there too, making us dinner so I can rest and focus on being present with my daughter. I ask, “Did you do your homework?” She replies, “Yes, Mom!” with a roll of her eyes. OK, we’re getting back to normal. I tell her I need her help and her eyes light up, enthused and excited to have a role in me getting better. I tell her it’s her job to remind me to walk every day so I get stronger. “Oh, Mom, that’s easy!” she professes. I suggest we start now, while we wait for dinner.
So we walk out the door, hand in hand, and take a lap around my apartment complex, never letting go of each other’s hands. One lap was all I could do, so I sit on a bench while she plays on the playground in the center of the complex. There’s never been a more beautiful sight than seeing her do cartwheels and sing and climb and play. The air never smelled so fresh. Then the sun began to set. I make her come and sit next to me and I put my arms around her. I make her look. I make her see the sunset, in all its beauty and splendor. We sat there until the mosquitos let us know it was time to go inside. She looks up at my face and says “That was so beautiful.” I respond, “You’re right, it was!” and as I looked at the smile on her face, I knew I couldn’t agree more.