A change in scenery, whether it be physical or mental, will undoubtedly alter one’s perspective. I’m embarrassed to say it took Mac’s diagnosis to see the beauty is some of the most ordinary day-to-day things of raising a toddler. Whether it be bathing, swimming, going to the beach, or even being able to wear a t-shirt, these were all things we used to take for granted. No more.
Our boy in the bubble was starting his life of trying to not live in a bubble. The bubble of, “he can go out in public, just not in large crowds. He can play outside but cannot have prolonged exposure to the sun because not only will he be more susceptible to sunburn but it will actually alter the makeup of his medication. He can’t go swimming. Don’t let him be around anyone you may suspect may have any type of sickness…even a runny nose they claim to be allergies. He can’t take a bath.” Yep, he can’t take a bath. In a split second I realized that our nights of two toddlers in a tub leaving the walls, floors, and self drenched to the bone were over. Well, for a year at least. “Well, actually, Mrs. Howard. He will have his central line 6-months post-chemo.” Ouch. Bath time used to be an indicator that the day was almost over–it was the last “chore” to be done before “mommy’s favorite time of the day.” Bath time quickly turned into a constant reminder of Mac’s illness, a reminder that he is not a “normal” kid, and he is living in modified-bubble. Funny how having something taken away from you makes you appreciate what you had. This is where we cue hair band Cinderella, “Don’t Know What You Got (Till It’s Gone).”
Now, we (Team Mac Howard) have walked down the path a little further. We have a few more “wins” under our belt. In this game of life-altering diagnosis & long-term treatment plan, you count the wins—EVERY SINGLE ONE—for once, we lived in days of losses but today, we are WINNING.
Mac’s Broviac-Central line was removed shortly upon our move to Boston and a portacath was implanted. The downside to this is obvious: our poor little guy having to have yet ANOTHER surgery and yet ANOTHER scar on his tiny body. The upside…you guessed it: “real” baths, pool time at pepe’s, and t-shirts (onesies are now an option and not a requirement!!). The fear before is that he (or Bleiler) would pull or trip over his central line. Heck, we will even let the guy play “naked baby” and run around the house. Oh, and another win that most of you wouldn’t consider…the linen closet now has one extra shelf to store towels, washcloths, or anything. In fact, I’m keeping it empty just to remind me that once, not too long ago, it was the holder of masks, gloves, heparin, saline, dressing kits, and all that other fun histio/cancer-fighting paraphernalia. Life is all about perspective and Team Mac Howard is choosing to see the “wins.” I can be the adoring and semi-psychotic mother that takes a million pictures of him sleeping just so I can look at him when I am not around him. I can watch the video of him swimming for the first time post-surgery over and over and still cry (every single time). The biggest win is we have Mac. I love him for his strength and the lessons and love he has taught not only us but complete strangers. Mac’s a Fighter!!
Bath time w/ big sis: WIN
Pool Time: WIN
Family Beach Day: WIN
Church on the beach as a family: WIN