Sarah Jones wrote that her heart is broken into unrecognizable pieces, but her soul is at peace to know that her son Connor has been welcomed into heaven, where he breathes, runs, plays, laughs free.
It is hard to imagine the grief of a mother and father. It is hard to be us, the bloggers, this strange little world we've created of type type typing, click-picture-save-as-posting, stupid video-making, midnight-emailing that we do. It is hard to live in this CF world where the people that understand you the most are people you never see, that due to the numbers, are spread all over the country- all over the world. The people that can tell you how to feel better and when it will happen- they are these virtual people that you have never even met. Yet, we mourn together.
Earlier this year we lost Eva, at the beginning of her young adult life, post-transplant, hoping to take her rock and roll mindset further into the world and light the place up with her smile.
Now, we have lost young Connor and with him, a piece of our friend Sarah, his mother, in her journey to save her son, to celebrate her son, to live, laugh and love with her son bravely as his disease took him.
What can be done? What can be said? What will change the way we feel for her and our need to wrap our arms around her and her family, while we cannot? Perhaps to send her our messages of love, hope and peace. Perhaps to pray and meditate and breathe. Perhaps to spend a moment knowing that the fight that we're all in is real. It's real. It's not arguments over how to raise kids with CF, or McDonalds versus free-range chicken burgers, full time work versus disability, in-patient or home IVs. It's a life and death battle. Even that- the "battle" metaphor that we get in little blog-up-and-downs about. Whatever this is, this is real, and it is life and death. Life and death.
No matter how many times this happens, no matter how many times we are reminded of family and friends that are lost, no matter how many of our fellows pass on - each time the realization that this is real - it is life and death - it is a shock, and each time, we are not the same.
I leave you with this poem that I read for the first time when I was about 11 years old, attending CF Awareness Day in Chicago, to discover that one of the younger members had passed, and her mother arrived to give roses to the "older" members of our group that hosted the event- then called "The Chosen Few," as in "The chosen few that made it," (granted, I was the youngest member and didn't really qualify to be in the group, but I was nosy and liked to plan social crap.) I did not know the girl had passed away, and her mom gave us each a rose and this poem (you may have seen it before):
I'll lend you for a little while, a child of mine, He said.
For you to love the while he lives, and mourn for when he's dead.
It may be six or seven years, or twenty-two and three,
But will you, till I call him back, take care of him for me?
He'll bring his charms to gladden you. And shall his stay be brief,
You'll have his lovely memories as solace for your grief.
I cannot promise he will stay, since all from Earth return.
But there are lessons taught down there, I want this child to learn.
I've looked the wide world over in search for teachers true,
And from the throngs that crowd life's lanes, I have selected you.
Now, will you give him all your love, nor think the labor in vain?
Nor hate me when I come to call to take him back again?
I fancied that I heard you say, “Dear Lord, it will be done!
“For all the joy Your Child shall bring, the risk of grief we'll run.
“We'll shelter him with tenderness. We'll love him while we may,
“And for the happiness we've known, forever grateful stay.
“But shall the angels call for him much sooner than we've planned,
“We'll brave the bitter grief that comes, and try to understand.” *
There are different titles, versions and authors attributed to this poem, but I'm pretty sure it is by Edward Guest.