June, 2022, the gifts and challenges of being home, from ashlee

As most of you know, we are home.  Home with all that home could possibly mean.  But as I said a few weeks ago, home is not a place, home is not a house or a building or even a city or state. Home is a state of mind and a state of being.  So yes, in April we left the safety of Nicklaus Children’s Hospital, located my dusty car, and cautiously drove home.  We traded the hospital room for the 3 bedroom house where our kitty cat, our furniture, all of our necessary (and unnecessary) stuff live.  Where I could cook meals once again and we could open the front door, check the mail, touch the grass, see the sky, step outside without asking a nurse if it was ok.  Where we could feel the comfort of sleeping in our own beds, but also sensed a lingering fear of getting too comfortable.  Too relaxed. After all, since July of 2020, we have had a small suitcase of hospital-stay-essentials packed and ready to throw in the car.  Now it has been almost 2 months since we have needed that suitcase.  We continue to go to the hospital for infusions, blood tests, follow ups, scans, physical therapy, but we have not spent the night in the 6th tower in over 7 weeks.  It is wonderful and terrifying.  But mostly it is a step forward towards healing and I think a new kind of independence.  I think of myself as pretty self-sufficient. I am a 53 year old widow.  I have had a career, been a wife, raised 3 children, had my own business, written music, been on television, on the radio, on tour.  Yet still, coming home made me realize how dependent we had become. I had become. Obviously, I have leaned on all of you. A lot. So much more than I could have ever imagined. I put my ego aside and have trusted your support to get through this storm. I am grateful every waking moment for that love.  Yet the hospital, the entire system, from doctors to nurses to employees, had been our daily foothold not only for support, but survival.  Our life jacket to keep us afloat. Our parachute as we fall. That 6th tower room was our safe space and our reality.  Michael’s existence was intertwined with these extended hospital stays. We longed to be home, but how could we leave when Michael’s life was still in the balance?  He was broken and being held together by IV’s, infusions, doctors, pills. Until something changed. And little by little, the broken pieces were being put back together, held by some greater force than medicine could explain, leaving strong but beautiful scars.  He could take his medications on his own.  He could walk.  He could get out of bed.  His “Michael smile” returned.  He was talking to visitors and looking them in the eyes, as if life meant something again. And his liver somehow rebooted and started to function once more.  We could envision doing this at home.  Without IVs. Without daily scans. But just like all the other steps for the last (almost) 2 years, they do not go in a straight line.  We have had goals.  Some of them we have reached, some we had to let go of, trying not to feel ashamed.  In the span of one week, between May 15th and May 22nd, we moved from our 3 bedroom house to a 2 bedroom apartment, celebrated Michael’s 21st birthday, watched on live stream as my oldest son Steven graduated, and booked one way tickets to Vancouver for Jennifer’s next chapter to becoming a dancer, the Arts Umbrella Professional Training Program.  The move was tough.  But isn’t EVERY move tough? Especially when you downsize by a LOT.  Michael’s birthday, maybe not exactly the 21st birthday most imagine.  The festivity included Jennifer, Kitty, me, Michael and a lot of cardboard boxes still waiting to be unpacked.  He had a few small gifts to open and a homemade vegan, sugar-free cake.  No going to a bar to get drinks to celebrate his first year as a “legal” adult. No hitting the club to hang with friends without a fake ID. But…… alive.  A month  before, I was not sure he WOULD see 21.  This is not an exaggeration. So, cake with his sister and mom, maybe that was enough. Steven’s graduation was a bigger checkmate, maybe.  We had a goal when we left the hospital in April: to drive to St. Petersburg and see Steven graduate in person, in cap and gown, walking across the stage to be handed his diploma with the highest of high honors.  I had missed so much the last 2 years, I could not miss this.  But I did. Michael spent that first month at home throwing up almost daily.  Unable to hold down much of anything.  How could he make the 8 hour drive there and back?  Or how could I leave him behind?  So, I sat in front of my computer at 8am, in my pajamas, with my cup of coffee, grateful that someone at Eckerd had decided it was worth it to live stream this momentous event.  I was crying when they announced Steven’s name.  Laughing when I saw he was barefoot under his gown.  His girlfriend sent me videos and photos.  The best video, Steven jumping into the water after the ceremony, still in cap and gown, with his roommates, now friends for life. Steven’s only demand to me for the day, stay with Michael, keep my brother safe and out of the hospital. He was such an adult already.  And Jennifer, well, her leaving home to pursue her dream still feels unreal.  Is this my baby?  Who never put on shoes, but always wore a princess dress? Who preferred her brother’s bathing suits to bikinis, rode a scooter before she could walk, then fell in love with dance just like her mama and her grandma before that?  I feel like I missed out on her last year at home, we spent more nights in the hospital than in our house.  But that is life. Our time was interrupted, but the time we spent together, spend together, is so much more precious. So deep. So filled with emotion and life. Maybe that means more.  She is beauty, in every sense of the word. Now, as I look over at Michael reading a book on the couch, I wonder what is next. The world does not stop moving or pause just because you are sick, or down and out, or spend months and months in the hospital. We are still on a kind of pause. No, that is not right.  That would mean stagnation and every day we go to great efforts to do good, to move forward, to get better, if not physically, then mentally.  So, no, not a pause, but maybe a kind of sheltered existence. We are once again part of the outside world, but not really.  Still finding our way. Still finding strength. Still finding our footing. The vomiting is getting better with a new medication.  But again, another pill. Another thing to take with side effects and consequences.  Always checking to be sure the good outweighs the bad.  Like that decision to stop prednisone 2 months ago. So far, the other dozen or so pills he takes each day seem to be working. Sun sensitive, immunocompromised, hair is thin, skin is thin, food is a challenge.  BUT, we are still home.  2 months later….. I am still a caregiver 24/7, but we smile more.  We try to live for the moment, but we talk about the future. We think of ways to promote helping others going through similar, or not-so-similar, situations.  We want to write a book, to speak, to share, to spread anything and everything we have learned.  We want to give back to all who have given so freely to us.  To you, reading this. We know there is a purpose. If this happened without giving life more meaning, then what is the point?  The tough thing is that we are home and everyone expects all to be good. It is over.  Battle won, mission accomplished. Michael has been healed and now we can go back to normal.  But we can never go back. We are too changed.  And the recovery is long. Sometimes it feels like the world did stop 2 years ago.  Or at the very least, that we are in a time warp. But Michael is not the 19 year old surfer who was diagnosed. Steven graduated college. Jennifer is off to foreign lands.  And I try to relish the moments we do have together. It is not the overflowing plate from the all-you-can-eat-buffet, but the small, rich morsel of nourishment, each bite to be savored.  I remember very clearly the day I learned that someone becomes a “cancer survivor” the moment they are diagnosed.  Each day of life after diagnosis IS survival. What I did not learn until now is that surviving has so many new challenges.  It is so long….. But, it brings so many new gifts into our lives.  I think we will focus on those gifts, while we keep facing those challenges head on.  We owe our strength to you. We love you….