This is a topic that has been on my mind lately. It has come up multiple times in our medical circle and I can't help but think more and more on it.
It's something that over the last 3 1/2 yrs Bob and I have talked about extensively, almost exhaustively. I think it's time to address it.
I bet we are thinking something different at this point. Most of you are thinking about divorce, court orders, split parenting, custody battles, and your ex's. As much as I could talk about those things, that isn't what I'm referring to.
Bob and I shared custody of our tiny hero. We shared custody with social workers, case workers, therapists, interpreters, teachers, doctors, surgeons, PA's, home nurses, hospital nurses, respiratory therapists, schedulers, pharmacists, child life specialists, nursing agencies, our medical online and local community, and all of the other people who shared a vested interest, need to protect and nurture, and downright love for our little man.
Eli was never just our child. I was never just his mother. From the moment we found out on our 18 wks ultrasound that our little baby was a boy and that he would be sick, we began to share custody. At first it seemed ok. A bit like a basic doctor visit. Chat about him at the office but ultimately he was our baby. We could go home and talk about things together, privately, just the 2 of us.
After Eli was born we had a few days at home. We watched him get sicker and sicker. Within days he was back in the hospital and at that moment shared custody became a real and permanent part of our life. We left that hospital on Christmas Eve with a van full of medical equipment, a handful of prescriptions and medications, home nursing, and tubes coming out of our beautiful perfect little boy.
Things in our home immediately got sold, packed up, shoved into storage to make room for all of the medical equipment. We learned new ways to care for a child that we had never heard of. Nursing started showing up every day. Our children quickly learned how to have a 3rd adult always in the home. Bob and I quickly learned about how much privacy meant to us, because it was gone. Every conversation, every kiss, every fight, every frustration, every messy dish, every unattended load of laundry, every tear now had a witness. We learned what it meant to trust someone we had just met with our home, our family, our private home life, our baby's life.
As time went on all of these things increased. We had to look for housing simply to accommodate Eli's medical equipment and his team and his therapies. Homes that were walker and wheelchair accessible. Homes that allowed nurses to be able to safely carry Eli around and navigate stairs. We bought furniture to fit our ever expanding family. Larger couches, dining room table with more chairs, etc. We learned to cook larger meals so we always had food to feed whichever nurse was working that day. We cleared out entire closets just to house the nurses supplies and paperwork. Birthday dinners, family holidays, home celebrations all included and extra chair, an extra gift, an extra bit of love extended to our new family additions.
Doctors became friends, as I spoke to them more than my own family and friends. I knew all the nurses, and schedulers, and receptionists. They were my friends, my confidants. We talked about life. We talked about Eli. We cried together. We discussed options, and quality of life. I entrusted them to care for my child day and night, weekday and weekend. They answered my calls no matter the time of day, no matter what. They were always there when we needed them. They helped make medical choices, they helped talk about quality of life, they talked to my little man, tousled his hair, colored with him, read books with him, played drums with him, they were on TV with him, they held him, they watched him grown, they noticed the tiniest changes in him and looked into it.
At the end instead of turning the other way, they came running. They showed up in PJ's and sweats, with caffeine to stay awake as long as it took, they gathered everyone, they called people all day and night and the next day. They fought valiantly for our tiny hero. They cried when we cried, they dropped when we dropped. They hurt. They gathered and struggled. The pain shown thru lighting up the entire PICU floor.
They held us, they cried with us. They gathered around us and held us up when we couldn't stand. They shared custody. The baby that died in the early hours of the morning wasn't just my baby, it was our baby. I shared custody.
I don't regret this for a moment as I truly believe that Eli wouldn't have made it as long as he did, he wouldn't have been as strong as he was, as healthy he was at the moments that he was, he wouldn't have gained the skills that he did without all these people.
BUT as a mother my heart and soul aches. I didn't get to just be a mom. I was also all of those people. I was a doctor, a nurse, a therapist, a scheduler, an insurance agent, a respiratory therapist, a pharmacist, a lab tech, a coordinator, an on and on. I had to share custody not only with the entire team that it took to keep my son alive, but with Mito itself. The medical equipment, the interventions, the meds, all of it.
I look back now and wish so badly that I hadn't watched the clock so hard to make sure we didn't do a med late, to make sure we didn't miss an appt, or a therapy, or a glucose check, or a nebulizer treatment, or that we weren't 10 minutes late for a feed or IV fluids.
In the end he got all those things and they were important and I don't regret it for a moment, but I wish I didn't have to share custody so much. I wish I could have been a mom more. Held him more. Kissed him more. Read just one more book. Played just one more game. Gone to the park just one more time.
Shared custody is over. Everyone has moved on with their lives. The moment my tiny man was buried the world moved on. The doctors and nurses and all the teams moved on to their next patients. I know they still love Eli, I know they still think of him, but they are all gone.
We shared custody, but we don't share our grief. I've been left alone for that. Was it just a job for them? The look in their eyes at 4:08am on April 28th 2013 tells me that it wasn't, but the 5 months since tells me for many that it was. Either way here I sit. My arms are empty and my heart is broken, for the rest of my life here on earth I will share custody as my baby is no longer with me.