“I don’t know how you do it, I wouldn’t be that strong,” a close friend said to me during a recent conversation.
I have heard this sentiment over and over again for the past seven months. My 4-year-old son has been hospitalized since September 2016, coming home briefly in March before going back to the local Children’s Hospital with yet another central-line infection. For seven months we have lived a disrupted life. Time split between two children. Days divided between home and the hospital. My husband and I have become ships passing in the night.
As well intended as the people are who compliment my strength, I can’t help but feel they are wrong. They could never understand how inaccurate it is to assume I’m strong. I’m not nearly the picture of strength I portray. But as a parent, there is no other choice than to stand beside your child. So I do. There is no other option than to fight alongside them. So I always will. The unconditional love of a parent for their child will allow you to find a strength you never knew existed but it pales in comparison to the strength residing within your child.
My son is the fighter in the family, the one whose strength and courage during this journey has never wavered. As his mother, I would love to say I have remained strong in my faith, in standing beside him, in fighting for him, but I haven’t. On more than one occasion I have broken down, pleading to a higher power for reprieve. But not my son. He has fought hard and continues to do so every single day.
My son is the one who has undergone countless medical procedures and interventions. The last half year is marked by surgeries, line placements, EKG’s, EEG’s and GI tests. Yet he never complains, taking each in stride and with unparalleled grace for his age. He lies still, smiling at the camera for X-rays and GI tests. He doesn’t play with the EKG or EEG wires, focusing instead in his favorite train, Thomas. He rarely cries or fights when coming out of anesthesia, though on occasion he will call for his momma.
My son is the one who has spent the last seven months living in a hospital. Every major holiday, and his birthday, has been spent within the hospital walls. He has been away from everything he loves since September: toys, his sister, the beloved family dog. He could be miserable and crying for home but he isn’t. Instead, he has adjusted to his living arrangement, greeting me with a smile every single morning when I arrive. Does he miss home? Of course, “I come home tomorrow, when I’m better” he says. But that’s it. He never begs to leave or for me to take him with me when I head out the door. Heartbreaking as it, he simply kisses me, tells me he loves me, and says, “I’ll see you tomorrow Mommy.”
My son is the one who has fought big battles raging inside his little body. He is the one who has overcome multiple infections. Infections that have threatened his life. He has battled against the 104° fevers that signal the frightening and reoccurring line infections. He is the one who had undergone countless courses of antibiotics, which upset his entire digestive system as they fight the bacteria in his bloodstream. He is the one who required only one day on the PICU after major abdominal surgery. He is the fighter, the champion who continues to bounce back after his setbacks.
My son is the one who hasn’t had anything to eat by mouth in seven months, and nothing to drink in three. He receives all his nutrition through Total Parental Nutrition (TPN) and supplemental g-tube feeds. Yet he doesn’t complain or cry for food. While we try not to eat around him, on the rare occasions we do, he doesn’t become angry. He doesn’t beg, asking for bites of our food. He simply asks, “Can I have noodles when I’m better?” accepting our “someday” response. Somehow he understands he can’t just yet, and accepts it.
The truth is I’m not the strong one. My 4-year-old son is. And if I’m lucky, some of Michael’s strength will wear off on me, so that I may continue to be the mother and advocate he deserves.
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Thinkstock photo by kdshutterman
Maria Colon is former teacher, turned medical stay-at home-mom, who also has a few mental health diagnoses. She writes when neither of her children need her.She has two medically complex children, a daughter, a son, a dog, a husband and a whole lot of housework.
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