This is Bree's life story that I wrote when I spoke at a conference at Primary Children's Medical Center. It was a conference about palliative and hospice care for children.
Bree-Elle, our little BumbleBree, also nicknamed Shesh, Bree, BreeBree and BumBum, was born in April of 2007. She was a result of our hope that we could have another healthy child. At birth, she was just like her sister, beautiful and sweet, yet also deaf. And at one week old showed the same biochemical markers that her sister had died from. Our hope was once again diminished. Charles Beard said, “When it is dark enough, you can see the stars.” In the full reality of what was to come (for we had very little denial this time because we had just lost Chloee 14 months earlier) and in the darkness of having a terminally ill child, came clarity and our vision for her. We hoped for a better life for her than Chloee had had.
Bree’s first few months were filled with small, manageable medical problems. She did better than we thought she would and yet our hopes were unstable. George MacDonald said, “It has been well said that no man ever sank under the burden of the day. It is when tomorrow’s burden is added to the burden of today that the weight is more than a man can bear.” This was our struggle during Bree’s life. Our hope was often swallowed by knowing exactly and with great detail what was to come – the death of another precious daughter. We struggled to follow Matthew 6:34 “So do not worry about tomorrow, for tomorrow will bring worries of its own. Today’s trouble is enough for today.”
At 3 months old, Bree-Elle was admitted for her first hospital stay. She was having seizure activity and while we were there trying to get them under control, it was a wonderful surprise to hear about the palliative care team at the hospital called the Rainbow Kids team. It was so nice to have someone on our side. I always felt like I was fighting the hospital in general. So much of the hospital’s vision is to “save” or “fix” and we were looking for something different. We did not know it, but what we were looking for was palliative care. I think we were easier than most families to help because we had a clarity and vision for Bree-Elle and we weren’t in the denial stage. A Dutch proverb states: “He who is outside his door already, has a hard part of his journey behind him.”
Through the help of the Rainbow Kids Team we were able to take our goals and vision for Bree and make a plan for home and for the hospital. It was invaluable to us to have the help of this team. Some of our goals included: cuddling her in a big bed and sleeping with her so she would know she was loved every minute of her life, eliminating procedures and hospital routines that did not directly benefit her, reducing medications unless absolutely necessary, letting her breastfeed as long as possible until starting tube feedings, taking lots of photographs, and being at home as much as possible. Our basic vision was to give her the best life we could for as long as possible. George Moore’s quote is extremely powerful to me. It says: “Reality can destroy the dream; why shouldn’t the dream destroy reality?” That’s what we were trying to do. We hoped to create a new dream for Bree-Elle to destroy her reality.
Bree-Elle came home after a 2 week hospital stay and she remained home for the rest of her life due to the communication and support we received from our hospice team that seamlessly took over from the Rainbow Kids Team. And because we had planned for the worst, we were able to hope for the best. Napoleon Bonaparte said, “Courage is like love, it must have hope for nourishment.”
In the next two months, we enjoyed happy, mostly healthy times with Bree-Elle. She was an absolute joy during this time and we treasured every second. She gave us lots of laughs and smiles. She had beautiful dimples and her sister’s big blue eyes. She loved to be held and tickled. Her favorite place was cuddled with us all in our big bed. Our hope for more good times grew. Anne Wilson Schaef’s quote sums up this time for us “So often, we believe that we have come to a place that is void of hope and void of possibilities only to find that out of the ashes of our hopelessness comes the fire of our hope.”
The last two months of Bree’s life were plagued with uncontrollable seizures. Nathan Kollar described how Bree’s suffering (and Chloee’s) felt to us: “Suffering breaks our world. Like a tree struck by lightning – splintered, shaken – our world is broken by suffering and we will never be the same again.” Some things are out of our control and no matter what we or the doctors did we could not get the seizures under control. Every other night, she would battle the seizures for hours and after 2 months of them, it had taken its toll on her body.
In November, Bree-Elle was dying. She was refusing to eat, sleeping most of the time, and her coloring was worsening. Friedrich Nietzche said, “Even the strongest have their moments of fatigue.” Thank goodness we had everything planned and in place for her death and how we wanted it to happen. Because when she was dying and someone suggested bringing her in to the hospital, I was tempted to do so because I knew she would leave us forever, but I believe it would have been the wrong thing to do for her and for us. She died in November of 2007 at home cuddled with us in our big bed as we had planned for her, as our gift to her.
Every second, I miss her. Bree-Elle, we love you BumBum! We miss you so much. Love you BumbleBree.
