Two weeks ago, one of our twins, Margot, had her tracheostomy reversed in hopes of finally living a life free of medical “accessories.” The twins were born at twenty-five weeks, weighing 1lb. each, and both girls needed breathing tubes the first four months of their lives. Meryl came home with no respiratory equipment, but Margot received a trach and a ventilator (promise that one day she would outgrow her need for both).
Nearly two years later, Margot is recovering from her trach reversal at the PICU and she is breathing entirely on her own for the first time in her life.
Having spent several months in the NICU with my girls as they grew, I knew the protocol of ICUs and the uncertainty of even the simplest of timelines. And yet hearing “maybe tomorrow” for the fourth day in a row always seems to come as a shock to me. It can be frustrating to have the mental timeline you’ve created and held on to for so long be pushed off for another day over and over again, and it doesn’t take long for depression to set in.
But that doesn’t have to be the case.
After over a dozen failed extubations between both girls during our stay in the NICU, going through this process again with Margot brought back a flood of old fears and vivid disappointments. But it also reminds me of the strength I hold within myself, and that there are ways to stay hopeful even in the midst of disappointment.
Having a specific phrase to repeat in my mind when situations are frustrating or uncertain can help keep me from falling into an apathetic or hopeless state. Phrases like, “I am here, and I have the strength for right now” or “Today I have all I need for right now” will remind me to focus on the present and to do all I can for the current situation– tomorrow I can re-evaluate. I am convinced that we are given only enough grace and strength to navigate the current moment we are in- and worrying about the future does nothing but bring stress to that present moment.
Having something to look forward to- no matter how small- can also help lessen the pain of a frustratingly slow day or when progress feels backwards. The next chapter in a book, the next episode in a TV show, spending a few moments journaling or a quick phone call with a friend- these all help give me something positive to look forward to later when all my mind wants to say is “nothing will ever change, life will never get better.” Because in providing my mind with a glimmer of hope, I can keep my attitude positive and provide better care for those I love.
And no matter how exhausted I feel, spending even a few minutes exercising (taking a walk, walking up and down stairs, or flowing through a few yoga stretches) always brings my mind back to the present and reminds me to be thankful.
Our ‘tomorrow’ may never come- or it may be sooner than we hoped. But knowing that I will have the same strength for that moment as I do presently is a comfort I will never be disappointed in.
– Britney Ammen, Springible Contributor