unexpected emotions

Its been a couple of days since Jeff has been home from the Glenrose Rehabilitation hospital and my lack of celebratory posts on instagram and the blog might seem odd. Jeff spent 2 weeks at the Glenrose after a 40 day stay in the hospital. These 2 weeks were filled with many therapies with trained professionals who knew exactly what to work on with Jeff and how. His days were structured and he was progressing at a rapid rate. This is an exciting time and this progression should have been joyful. So why have I felt more anxious than ever? I have a few theories, all of which seem completely rational yet filled me with overwhelming guilt. Jeff being home means we lose the support and direction of the many professionals Jeff had working with him for the past 2 weeks. My responsibility would increase as I took over the role of therapist, and I honestly didn't want to lose the incredible support we had from so many friends and family members who wrote Jeff off as "better". Suleika Joauad put it nicely in her recent Ted talk when she said, "being cured is not where the work of healing ends, its where it begins." Although I don't view our situation from the lens of someone who has been "cured", I can bring the perspective of a caregiver to someone who admittedly doesn't remember the first 4 weeks of his recent hospitalization. Previous experiences taking jeff home after 3 brain surgeries, many rounds of chemotherapy and radiation, have taught me how true this statement could be. The first day having Jeff back was a difficult one for me full of complicated and unsure emotions. Guilt for not being ecstatic to have Jeff home and anxious for what the days ahead would look like. While everyone around me jumped for joy and celebrated the good news of Jeffs return, I wanted to hide or more accurately run away. I suspect I'm not the only one who feels guarded after such a trauma but I do know, so many of you out there put on the same mask I did. I hid my feeling down deep in a place where only I could see them so that others could have their happy ending. I nodded in agreement as acquaintances awed over the miracle that Jeff was and smiled while others told me what a relief it was to have Jeff home. It IS an incredible blessing to have Jeff home and I have been acutely aware of the many miracles that have happened along the way. Regardless, I would be doing a disservice to others in my same situation if I only wrote about the good. Over the last 2 months I have had the opportunity to talk to some truly insightful people who have blessed me with their perspective and the 2 greatest things I have taken away is 1) Its ok to not be ok and 2) Don't should on yourself and don't let others should on you. Ok ok, the second one wasn't from someone I talked to directly but from Nora Mcinerny in her podcast "Terrible, Thanks for asking." I realized that I was letting others should on me when I put on my mask and pretended to feel exactly how they thought I should feel. And, why, after all our family has been through, did I feel like I needed to be ok. My most meaningful moments these last 2 months are the times when I was able to be so incredibly vulnerable with friends who would open their arms and allow me to not be ok. Not allowing others to should on me is a work in progress but allowing myself to feel what I feel when I feel it has helped me to understand myself and work through those emotions more efficiently than I would have otherwise. Jeff has continued to progress over that past few days since he has been home and I look forward to continuing progression. Even though some days my be harder than others, I look forward to the day I can be as much of a support to my friends and family as they have been to me.