They held our hands too

by Lincoln Ely

Lincoln Ely and his family hold a portrait of Erica.

Lincoln Ely and his family hold a portrait of Erica.

Death is as natural as life – with one comes the other.  We know we are all going to die someday.  How important can end of life possibly be, though, when it is so far “out there”?  But edit one small word – replace “someday” with “within three months” – and everything changes.  This concept is what hospice is all about.

Let us change the circumstances once again.  Suppose the above sentence read, “My daughter is going to die within three months.”  It is for most of us terrifying, if not unimaginable.

Yet, that is what we heard in March 2011, after Erica, our eight-year-old girl, had fought a brain tumor for six years. It was what we had dreaded and it was now upon us, very imaginable and very terrifying.  Imagine your child leaving this human community in less time than you have left to do your Christmas shopping this year.  The natural order of things had changed; nothing is or ever would be right again.

As a parent, you are falling into a bottomless black hole, and the “normal” world recedes from your view.  You have to communicate things to your child you can’t possibly understand or explain.  The medical community can no longer help you – they naturally and understandably focus their energies on patients who still have hope.  Without anyone’s intention, you and your child are left, at the worst possible time, with no one to help.  Dealing with this is what children’s hospice is all about.   Its worth cannot be measured.

In this situation, there is nothing more important than providing the best quality of life for your child.  For years we had done everything to get Erica the best medical treatment; now that treatment had failed, we had to find the best way to minimize her suffering.  In doing so, we found Kids Path®, the pediatric hospice program of Hospice & Palliative Care Charlotte Region.  You have only one chance of getting this “right”, because there is no “do over”, and regrets about what you might and might not have done can weigh like an anchor on an already broken heart.  You need skilled, knowledgeable, caring help to get through it.  Kids Path was just that.  This is just some of what they did:

They got to know Erica months before she died, when she was feeling “well”, so that they could build a relationship with her and help her feel comfortable with their care.  Since she had dealt with the medical community from age two, making her comfortable with yet more strangers was quite a feat but so very critical.

Erica’s favorite color was green so they painted her toenails green, and called her their “green girl”.  Her nurses, Jordan and Jacques, painted their toenails green.   They played games and drew pictures with her.  They played dress up with her, and even put her favorite stuffed toy in new clothes each day.  They spoke gently to her with soothing words.

They went to Erica’s school and educated her classmates on brain cancer.  They listened to Erica’s friends’ concerns as she became physically less able.  As she went from a walker to a wheelchair, her Kids Path team had the class decorate both; the class named the walker Susie and the wheelchair Sammy.  Erica loved her school and all of this made her so happy.

They educated us on what to expect medically and emotionally at each stage.

For example, they knew when to stop the “delaying” medicines and start the pain management ones.  They suggested we capture Erica’s favorite memories in a book and we now treasure that little book.  There is no way we would have had the presence of mind to do that, but the avoided regret is worth a fortune to us.

They handled the ordering and delivery of all supplies, all medical devices (and there were many) and all pharmaceuticals.  This is huge when you are just hoping to have the strength to endure another day, let alone be able to provide the most comfort for your child.

They were available 24 / 7.  They came to our home (where Erica wanted to be) as often as we needed them and were always on-call.  It was a tremendous relief to have that available.

They held our hands too.

They were there on Erica’s dying day, carefully adjusting dosages as she slipped into unconsciousness and finally away forever.  They came to the funeral. They have since stopped by to check on us to see how we are doing.

How these people do it, I know not, but they are of a most special breed, and they provide a service that is vital and immensely valuable.  Kids Path holds a special and permanent place in our hearts.

Explore posts in the same categories: awareness, cancer, education, end of life, hospice, Kids Path, spiritual care

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2 Comments on “They held our hands too”

  1. Jim Young Says:

    I have read this post several times, and I am finding it difficult to say want I feel I need to say, and I would not want to disrespect your words of courage, your words of honesty, your humble words of true unconditional love. I greive your loss as I have just lost my first grandchild, a child that never got to take his or her first breath, a moment of hope that faded quickly. I know every moment was a cherished moment with Erica for i know in my heart that when you were together, nothing was greater that the love you had for each other, a love the now streches to the edge of forever where Erica now rests peacefully. I know this place exists for this is where my grandchild now rests with my mother, and one day we will embrace them once more, and this time, we will never, ever, have to let them go. Your heartful words leave me with reassurance in my commitment to Hospice, and I have begun to inquire my own hopes to walk with someone as special as Erica and your family with kids path. The grandchild I never got to embrace taught me that death is not the end, it is only the begining, and one never truly dies as long as the remain in the hearts of those who truly loved them. God bless your family, and thank you for sharing your story of love.

  2. […] reader of this blog, you’ve read our stories, right?  We’ve had some doozies — Lincoln Ely describing how hospice helped his family as his young daughter, Erica, passed away; a wife’s testimony about how hospice is so much […]

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