What IS a normal day? For anyone, really? I think all of us just want a ‘normal day’ most of the time, but it’s always interrupted by something unexpected. Which just means that the nature of life is unexpected stuff that happens all, the, time. A normal day actually means a boring day, does it not? The most we can hope for is that the unexpected just slows you down, derails the plan, or makes you a little crazy...nothing that brings you to your knees.
Six and 1/2 months, Rhodiola and Thyroid meds, some new friends later...it seems we’ve fallen into the rhythm of that elusive “new normal” one reads about all the time after something life-changing. There are often several days in a row without significant tears (aka a true breakdown of more than a few minutes that requires more than one kleenex), though every day or two there are still a few that fall amidst a breaking voice in some conversation. Those moments of trauma big or small happen less often, we spend less time in her room. I even got on a bike yesterday and today and was able to genuinely enjoy that they have been beautiful summer days. I go to work, we go to support group, Brad looks for jobs and files for unemployment payments weekly and manages all this stuff with his Dad (along with his siblings), along we go.
And yet, and yet. Sunday I spent 3 hours weeding the garden as Brad was making his way back from golfing with friends for 4 days, and thought about how this was why we registered for the powerful baby monitor. So I could be far out in the yard and still hear her cry if she woke up from her nap. During that 3 hour period, surely I would have had to feed or change her. And Brad, when he came home, would have smooched me soundly before going immediately to find her, if I didn’t have her in my arms to welcome Daddy home already. I don’t spend all my time thinking “if she were here, XYZ would be different in CDE manner”, but sometimes it just Is. That night I had to get out of bed at midnight and just go have a good cry in her room because I couldn’t stop the slow flow of tears and the tightness in my throat was too uncomfortable and the tide of missing her wouldn’t recede. Working at the hospital last Friday I was walking down a hallway alone and suddenly thrown back to leaving the (birth) hospital with all the doors closed in the maternity ward so as to spare us those happy new families and Brad absolutely falling apart at the seams and utter horror of leaving there without her. It remains one of the worst experiences, right up there with the night she died. I found myself saying “think of something else anything else it’s only 9:30 in the morning and you have patients to see and you can’t do this now think of anything else”...which of course works not so well. Then Saturday, for the second time I think in the 16 years I’ve been a speech pathologist I had to take a few minutes to shed some tears over a patient. We work with getting patients back to their life, not making death easier. When a patient goes on palliative care, we rehab therapists are outta there. To know that for a few minutes today I interacted with a life that would no longer be a life before I even left the building...the tears of the son who was urgently calling family members to get there before it was too late, as the event was unexpected. It was just...too close to home.
That said, our own experiences of late certainly influence my interactions with patients and their families. Teary eyes, a few more minutes to genuinely be with them, to acknowledge and affirmtheir life-changing event, that none of it is easy, that for many life will never be the same. And so it goes. The big question isn’t whether your life will change, it’s how and when.