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Bree-Elle's Talk

Given by Mary-Ann Sontag Bowman, Ph.D., LCSW at Bree-Elle's Funeral

Shared with Permission of her Wonderful Family

pinwheelThere are no words that can ever make sense out of the death of a child - I won't even try. Oh, it is so tempting to want to fill that vast empty void of unknown with some kind of meaning, but the words that make meaning out of a child's death typically only comfort the one saying the words. And aren't we here to comfort those who mourn?

And so, let us consider for a few minutes this journey that Jake and Denise and their children have taken together so that we might better know how to comfort, how to support and how to remember two beautiful little girls in ways that might best serve their family.

I first met Jake and Denise on the night that Chloee, their older daughter, died at Primary Children's Medical Center. I was called in to provide support and to make molds of Chloee's hands. She was a beautiful little person, and Denise and Jake were surrounded by staff who loved them and who loved Chloee. It was a tender time, one that I feel privileged to have experienced.

Bringing a child into this world is such an act of faith. There are no guarantees that things will go well, and yet so many of us take on parenthood with a naive optimism that our children will be perfect in every way.

Jake and Denise lost that innocence, that blissful illusion that all children grow up healthy. With the death of Chloee, so too died the ability to believe that all children live happily ever after.

But what is remarkable to me is what they did not lose - their faith. There are no words to describe the aching devastation that is grief following the death of a child - it is truly an emotional Ground Zero.

And yet these two people, connected by their love for each other and with full knowledge that they might find themselves walking the same path of heartache, welcomed Bree-Elle into their family. What an act of faith, optimism and sheer courage that was.

And what a tribute to Chloee and to their son - that Jake and Denise believed that the joy of children outweighed the risk of heartache.

I remember the sick feeling I had when I learned that Bree-Elle had the same disorder as Chloee. Life can be SO unfair and the deserving indeed can be cheated in such cruel ways. There is no way to put a positive spin on the hand this family has been dealt, and we should not even try.

This news was, of course, devastating in ways that none of us can truly comprehend. And yet, Jake and Denise squared up and faced it. Not only that, they took it on and made the experience their own.

With Chloee and her experiences as an ever-present guide, Jake and Denise thoughtfully, lovingly considered what they wanted for their baby girl. Who among us can imagine sitting and talking about how we want our child's death to be - and yet that is exactly what Jake and Denise did. With our palliative care team, they detailed what they wanted and did not want for Bree-Elle at the time of her death.

By doing this, they created a plan for her life as well. This plan was based on the goals of reducing suffering, enhancing Bree-Elle's quality of life and having as much time with their daughter as possible.

Jake and Denise did an amazing job balancing a multiplicity of demands, emotions, and experiences. It is so hard to know how far to go to keep a child with a life limiting illness with us, and it is normal for parents to want that time to be as long as possible.

Jake and Denise never expected Bree-Elle to bear the burden of suffering in order to meet their own desires to have her here. Always it was about Bree-Elle and what was best for her.

And so they looked back on what Chloee's experiences had been and then looked forward and shaped Bree-Elle's experiences - with courage, with faith and with a love that allowed them to do things that no parent thinks he or she can do.

Bree-Elle lived and died at home because that was what her parents thought was best for her. I remember them talking about their goals for her death - that it would be with them, at home in their big bed. But they were scared - how could they manage her without the support of the nurses that so loved them? Would their house be filled with sad memories if Bree-Elle died there? What about their son - how would this impact him?

But their fears were not enough to stop them from doing what they believed was best for their child and for their family, and so with the help of many, Bree-Elle's life was spent at home, with her family and with as much normalcy as could be managed in such a situation.

What a gift Denise and Jake gave Bree-Elle and their son. And what a gift Chloee gave to her family - because it was her experiences that taught Jake and Denise what needed to be done for her little sister.

A child's death forever changes a family and those who love them.

The experience of grief is lifelong - it does not go away after a certain amount of time. Yes, it softens but always there is a place in your heart and your soul that yearns for that child.

There are no stages to grief - it is not that organized of a process. Rather, grief is like entering chaos, with emotions and experiences swirling about you in such a way that normal life feels impossible at times. The job of grief is to re-order the chaos - and that takes time - a long time.

We are familiar with the sorrow of grief, but it is so much more than that. Grief is emotional - overwhelming sorrow, a raging anger, guilt at what was undone or unsaid. Grief also impacts our minds. It is normal to be confused, and have trouble remembering things. Grief is physical - people who are grieving tend to be very tired and yet sleep is often hard. It is normal to have physical symptoms of grief.

Grief impacts our abilities and desire to interact with others. It all seems so meaningless - and somehow wrong that normal life is going on when something so terrible has happened. A bereaved parent's world has stopped - and yet everyone else goes forward. It is an isolating experience to lose a child.

And grief raises all kinds of spiritual issues for many people. How could God let this happen? Why us? What did we do? Why do other parents who do not care for their children escape this heartache and devastation? What kind of a God causes such suffering to a baby?

Resist the temptation to answer these questions for these are expressions of pain, and therefore have no answers that anyone else can provide. Each parent - in his or her own way - finds the answers that are needed.

The spiritual crisis that so often accompanies grief is personal and is between that parent and God, and other people just seem to get in the way.

I am often asked how to best support bereaved parents, and so I share some ideas because I know you are here because you love Denise and Jake and want to help.

First, remember that this is not a problem to be fixed. Unless you have resurrection powers, you cannot make this all better. I have found accepting that helplessness is critical to supporting bereaved parents because the more we try to make this better, the worse we seem to make things.

Second and related to the first, skip platitudes. Platitudes are those things we say that are intended to make this all better - like, "she is in a better place" or "It was God's will". One family was told to think of all the money they would be saving since their teenage son who died would no longer be needing it to go to college!

Let me tell you what the experts say. Denise is on an email grief support group and had kept the group updated on Bree-Elle's condition. Earlier this week she posted two words: "she died". The responses from the other parents were immediate and reflect their expertise: none told Denise what she should or should not do, or should or should not feel or tried to make meaning out of Bree-Elle's death. Instead, the messages simply said how sorry they were, and they sent hugs and love and support.

Parents will find their own meaning and their own answers - what they need from us is love, concern and expressions of shared sorrow.

Third, bereaved parents need understanding and acceptance. This deep pain and grief will not go away anytime soon and so they need us to be compassionate and patient as they work their way through the chaos of grief.

We are loving and supportive when we place no time limits on grief, and when we recognize that grief prevents people from being able to function in normal ways and at normal capacity for some time.

Bereaved parents are like a saturated sponge - there is no room for one more bad thing to happen. And when it does, the reaction can be a flood - and they need us to be understanding and recognize that the big reaction is not really from losing the keys -- but from losing the child.

We support bereaved parents when we do not take anything personally, and when recognize that although unseen, their wounds are deeper than we can ever imagine, and sometimes pain makes people lash out.

Finally, we can support the bereaved by not forgetting. Yesterday I was talking to a bereaved father and he shared how hard it was when people did not talk about his twin sons who died. Bree-Elle and Chloee lived and are loved - remember them.

And remember that this family will be hurting long after you return to normal life - let them know that you have not forgotten. Cards and letters and flowers and meals will be appreciated even more in the weeks and months ahead.

Bree-Elle lived her lifetime and it was too short, but it was hers. Her parents embraced and loved her even as they knew she would be the cause of great sorrow. Their experiences can teach us much about love, about courage and about the human spirit - and so that is Bree-Elle gift to all of us.

Love triumphs over grief. Maybe not today or tomorrow, but eventually it does and it will. We are heartbroken that Bree-Elle has died, but rejoice that she lived, that she was loved, and that she will forever be part of this family.

I speak for all of us from Primary Children's Medical Center when I say that are honored to have known Bree-Elle and been part of her life, and Denise and Jake -- we are inspired by your courage, your faith and your love for your children and for each other. Thank you for letting us be part of such a tender time in the life of your family. I think I speak for all of us here when I say that we love you and extend our deepest sympathies.

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