We are a family of six: my husband Ben, myself, Julia (6 years), Beckett (would be 4 years), Clementine (would be 3 years), and Wilbur (18 months). My husband and I carry the same mutated gene giving our children a 1 in 4 chance of inheriting metabolic acidosis mimicking pyruvate carboxylase deficiency.
We are unsure of exactly what Beckett and Clementine had but basically their bodies couldn’t metabolize food properly, so instead of creating energy their bodies created lactic acid and ammonia. The disease Beckett and Clementine fought with was degenerative and with no real treatment options, slowly and quietly their bodies, especially their brains, were dying. We were originally given a life expectancy of 7 days, then a few months and finally doctors gave up trying to pinpoint a timeline for us. In August of 2014, Beckett and Clementine entered the Boston Children’s Hospital ICU for the 8th and final time. After spending 8 weeks in the hospital we decided to bring Beckett and Clementine home on palliative care/hospice. Clementine passed 9 days after coming home, within two hours of realizing she was in crisis, our sweet Minnie took her last breath on October 14, 2014. Beckett held on until December 13, 2014, his passing showing us a much more raw and defeating death; taking almost 24 hours and requiring Ben and I to be active participants in administering morphine.
When we went home on palliative care, there were lots of meetings. Meetings to sign paperwork, meetings to learn new home care and medical procedures, meetings to discuss how to give medication for comfort when “it’s time.” In the great shuffle to go from using every means necessary to save life to only providing what will be good for the heart and soul of patients and their families, often the healthy children are caught up. Parenting is difficult on it’s own, but throw in two terminally ill siblings and, well, there isn’t a Sesame Street episode to cover that. We spent three years trying to prove to our kids that this way of life was just as wonderful as the families whose children were all healthy. Then came Fall 2014, and just as the leaves fell to the ground so did all of our hopes for our family of six. During all of our time spent around conference room tables hashing out “the new plan,” the most important meetings were with professionals who could give us advice on how to help Julia (at the time 6 years old) and Wilbur (at the time 6 months) through the deaths of their brother Beckett (3 years old) and sister Clementine (2 years old).
We constructed what seemed to be a decent blueprint to go home, and then we did just that. We left the hospital, and we were finally free to soak up the last of our days all together. Ben and I did not tell Jules that we were bringing Beckett and Clementine home to die–we didn’t want her to worry. The first week was amazing and terrifying; we were trying to live in the face of death. It felt for a moment like we were suspended in mid-air, as though we could maybe somehow all come out of this alive. The morning of October 14th, I went upstairs to check on Beckett and Clementine (Minnie). I didn’t notice Minnie’s breathing at first, she was covered with blankets, her usual sleeping arrangement. As I rolled her little body towards mine, I saw it at once-she was beginning to slip away from us. I explained to Jules what was happening and asked her if she wanted to say goodbye to her little sister. Jules cried for a moment, said she didn’t want to see her but then her mood shifted to happiness when she found out she would be playing at a friend’s house until we called for her. I am glad that Jules was not home for the active passing of both children (Ben and I were able to focus on comforting our dying children and grieve that beginning of the process), but we made the mistake of not having her home to say goodbye to Clem’s body. When Jules returned home that night, she came in and looked around asking me, “Well, where is she?”
With Beckett eight weeks later, we brought her home to say goodbye to him. Our pastor had the brilliant idea to wrap Beckett in a heated blanket so that he was warm. Jules sat on our bed, chicken nuggets in hand and said her peace to her little brother. She cried and told me she couldn’t eat, but we laughed remembering that Beckett would have tried to grab the food from her and eat it himself if she didn’t. She was tearful, but asked me “does this mean I can have his seat in the [mini]van now?” We both left the room, but a few minutes later, Jules went back in on her own. Hugging and kissing him, she sang to Beckett and left him a note “to take with him so he will remember us.” Jules became hysterical when the funeral director came to take Beckett’s body.
Everything Julia feels is raw and so much of what has happened since last fall is so foreign to her. Jules feels all the feelings, at any given time and doesn’t have any past experiences to muddy it. It’s open and beautiful and innocent, but at the same time I wish she didn’t have to experience any of it. Ben and I decided to face all of this head on as we always have, treating Beckett and Clementine’s passing as natural, because for our family, it is.
She’s held both their ashes in her hands, helping to sprinkle them on our family vacations. Julia helps to decide what cake to bake on their birthdays, and she arranges their ashes at the table so we can sing happy birthday while she blows out the candles. She only recently spoke about them at her last grief counselling session (a small art therapy group for children her age), so I think she is more comfortable talking about them with people she knows a bit more personally. A few times she has had breakdowns. I have tried explaining that Beckett and Clementine are in heaven and someday Jules will join them. She replied, “that is going to be forever from now, not too long for you because you are in your older years but I am still little!” Jules wants more siblings, specifically a sister. She becomes quiet and withdrawn at family functions if she sees lots of sisters playing together. She made a connection while watching Frozen, she liked to see Anna and Elsa together because “it just like me and Clem.”
Wilbur has the benefit of his young age to insulate him from this process, which is both a blessing and a curse. Wilbur does not feel the emptiness and overwhelming sadness at this moment, but he will not be able to recall any memories with Beckett and Clementine. Wilbur will only be able to relive his bond with them through photographs and our stories of their short time together. Julia has witnessed all of these last four years firsthand. She has lived every minute of Beckett and Clementine’s lives. Jules slept in bed with Beckett every night, she came to every doctors appointment and on more than one occasion lived at the hospital while Beckett and Clementine recovered in the ICU. Jules made friends at the hospital and rode her bike for the first time down the NICU corridor. Boston Children’s Hospital is a part of her childhood. When we left Boston Children’s for the final time, Jules said goodbye to so many who had a hand in raising her. Julia lost more than just her brother and sister this past year, a part of her village has broken away.
Jules writes about Beckett and Minnie constantly, drawing pictures of them flying to heaven (complete with little feeding backpacks) while she looks from her bedroom window. Jules struggled with school and relating to her peers. It was difficult to talk to her classmates about her family because our situation is what one would call “unique” so we began homeschooling last April. It’s been rocky. A very big change among so many others, but I know it was the right choice. Being at home gives us a chance to stay close and find comfort in each other when we begin to stumble.
Jules has always been an independent child, but after Beckett and Clem passed she would follow me around from room to room, becoming my shadow. She needs more support these days, so we try to hold her close while letting her grow. It’s a fine balance and Ben and I question ourselves everyday. Because we went through the process twice, we were able to adapt to what did and did not work. We learned through the passing of Clem what we should do with Beckett–both for Beckett and Jules. As much as this is a process for the parents and the child who is dying, the children who will remain are equally as important and should be involved. We knew how much Jules could handle and what would be appropriate. We formulated a plan that worked for our entire family. A 360 degree outlook is imperative, as every person in a household matters. A death will affect each one differently but the impact will be just as profound on a child as on an adult.
Hi, I’m Allison. I stay home most days to care for my wild little children in a tiny town next to the even tinier town I grew up in. A college dropout, my life has unexpectedly turned out pretty wonderfully, thanks in big part to the high school football player who took a chance on a girl he met in gym class. I swallow books and doughnuts whole, flop around on my yoga mat, and hope I can someday soften the world’s perspective on life after loss. You can find my words here.