I’ll start with the good. This weekend we finally celebrated Easter. Because I was in the hospital on Easter day, we couldn’t enjoy our normal family traditions: church, food, family, fun. The weather was so beautiful this past weekend that we decided to have an Easter “re-do”. We had an egg hunt for Mackenzie, who quickly found all of the eggs. Once she realized there was a piece of chocolate in each of them, she started unwrapping all of the candy. We’re still rationing that chocolate, so next year I need to take a more diversified approach to filling plastic eggs.
We also gave the girls their Easter baskets filled with toys. Mackenzie enjoys taking care of her baby doll everyday, so she loved her new play diapers and bottles. Lexi was more interested in the basket than the toys, of course. We ended the day with a ham and all the fixings. I’m so thankful that we celebrated Easter as a family, even if it was three weeks late.
Now for the bad, which incidentally is also the fistula: I’m in the hospital again. It’s only been three weeks since my last visit, but here I am, back at Johns Hopkins. And it’s all thanks to the fistula, which by the way, is a word I didn’t even know existed until a month ago. Nevertheless, the fistula from my bowel to my bladder is causing me trouble. It seems that bowel is starting to leak into my bladder, which has created an infection and is causing me pain. I’m having surgery tomorrow to remove the fistula and resect my colon, as well as remove about a foot of inflamed intestine. The surgery will take about three hours. My doctor will attempt to do it laparoscopically, but she might need to open me up if things look worse on the inside than she anticipated. I will be in the hospital recovering for 3-5 days and then I’ll continue my recovery at home for 2-3 weeks.
Of course, I’m anxious about the surgery, but I’m also excited. I feel like I have hope for returning to a normal life. My doctor said I should look at this as a fresh start. She is removing the disease and then I will have a normal GI tract. I haven’t heard the words “normal” and “GI tract” in the same sentence in… well, let’s not reminisce. In addition, the Remicade infusions could prevent future inflammation and complications. My doctor said most patients are surprised by the boost in energy they experience after surgery, and that most of us don’t realize that the fatigue we experience is a symptom of the disease, not a side effect of everyday life.
I almost cried as she told me all of this. When chronic pain has become your normal, it takes away a piece of your spirit. I’m a Christian, so I have faith. I’m an optimist, so I have hope. But my spirit, what distinguishes me from everyone else, has diminished some. I don’t say this out of self-pity or loathing, but in sincerity. When you spend enough time watching your daughter play outside while you sit inside on the couch, it affects you. When your daughter sees you on the couch and without hesitation touches your stomach and says “Mommy tummy hurts”, it affects you. And when your daughter prays for you each day and speaks healing over you, saying, “Mommy all better, bye-bye doctor”, it nearly crushes you. I’m lucky that my girls are young and won’t remember any of this, but I will. And here’s what I’m choosing to take with me:
I’ve received exceptional health care during my time in the hospital. The nurses are friendly, attentive, and patient, and the doctors are competent and thorough, with a good bedside manner. The staff here truly wants me to succeed.
I have a great support system at home and at work. My family, friends, and coworkers reach out to me on a daily basis, offering prayer, support, and help in any way they can. They make this feel like less of an inconvenience, which helps me to relax.
My older daughter, Mackenzie, is more empathetic than I would expect a 2 1/2 year old to be. She holds my hand and rubs my back when I’m in pain, she hugs me when she can tell I need one, and most importantly, she prays for me. I never imagined a scenario in which I would rely on my daughter instead of the other way around, but I’m glad to see the kind of person she’s becoming, one who cares about people.
Lastly, I’m stronger than I realized. I’ve spent much of my time in the hospital alone, and that’s okay. Matt still has to work, the girls need to go to school, and life goes on. I’ve spent a lot of time reflecting in this blog, which has helped me more than it’s helped others. I look forward to looking back on these posts when I’m healthy, with a humble appreciation of the simple things we all take for granted.