Making a Wish

I got it.

I got the picture I needed, the one I wasn’t sure we would be able to capture.

It’s the perfect picture.

It’s a picture of bright, shining eyes, full of light and sparkle the way that only happens when she is feeling well and laughing, those eyes where the left one is never quite as open as the right one since her stroke, those eyes that are open after three comas, almost thirty surgeries, and so many lifeless stares as they pushed on her little chest and pushed helium into her too-small lungs to try and help her breathe again.

It’s a picture of that little button nose, in a moment when they were empty of tubes for feeding or breathing.

I know it isn’t a complete picture of her experience, but it gives me a picture of who she is under all those layers.

It’s a picture of Kyrie just being Kyrie, and not Kyrie being sick.

It’s a picture of that crooked smile.  Oh, her smile!  It’s crooked from nerve damage from two of the surgeries, and even still that too-small mouth from her too small jaw that doesn’t have room for all her teeth – those miracle teeth they said she wouldn’t have, those teeth that don’t even get to munch on food.

It’s a picture of her perfect little chin – too perfect, shaped by plastic surgery so many times in two years, trying to make room for her to breathe.  If she had barely turned one way or the other, you would have to look closely to see the scars on the side of her face, usually hidden by her hair.

Even the bump on the inside of her lip is there, marking where her tongue was sewn to her lip for the first year of her life.  They didn’t cut her tongue back away from her lip until she was one, at the same time they repaired her cleft palate, and even then they pierced her tongue and stitched it to her cheek, just to keep her airway open while she recovered.  That’s how she spent her entire infancy trying to drink from a bottle without actually using her mouth, breathing formula into her scarred lungs, and using more calories trying to suck than she ever actually gained from what she was able to get down.  That’s why the ng tube was always there, taped to her round cheeks until she finally go the gtube.  That’s why her tongue moves sideways only, and doesn’t lift up, no matter what tricks they try in speech therapy.

This picture?  It is is a picture of a miracle.



It’s the perfect picture of Kyrie, because it captures her and all her stories, but without her looking sick.  Because she’s more than just a sick girl.  She’s Kyrie.

It’s the picture we will use for her funeral if that’s the Winter we have, but it’s also the picture that gives us hope for Spring.

But funeral planning is a thing, when you have a palliative care team, when you are a little girl who can’t breathe.

(Farah Alvin will be singing, by the way.)

But here, in this picture, there is life in her face, and that was the picture we needed, the picture she needed.

She is the picture of hope, of courage, and of life.

That’s what they told us last when her story was submitted for Make-A-Wish.

It was a sucker punch, getting that notification.

I mean, it’s an amazing thing they do, and I have no idea what Kyrie will wish or what choices we will discuss or what will really happen or not.  I know that if she is selected, that it will be a very special experience no matter what she wishes.  We are so grateful for them to even consider her, and it’s an amazing program that strengthens and cheers so many children.

But the selfish part of me knows that making a wish means the end is coming, and I’m not okay with that.

In fact, I am really, really, really not okay with that.

No one would wish that.

In fact, wishes are now off limits for everyone (my apologies to Alex, who has the next birthday).

Except it’s not about being selfish, and it’s not even about a life being over.

It’s about embracing the strength and courage to endure hard things.  It’s about celebrating what life means, and how living life to the fullest helps others live, too, whatever living means to them.  It’s about celebrating a life that has changed thousands of other lives.

It’s about stepping away from hospital life, and just being a family, for a moment, without the stress and worries that are very much a part of everyday life when you have a child on the “chronic death trajectory”.

It’s about comfort, and quality of life, and spending time together as a family.

Because time is all we have, really, until later, when time won’t matter anymore.

It’s about acknowledging that the last two years were hard – really hard – and taking a moment to stop and rest.

Maybe even breathe.

But not wish.  I can’t.  I can’t do it.  It’s too hard for me.

But that’s okay, too, because it’s not my wish.  It’s her wish.  And so we will let her wish.

Because when you look into a face like that, and see eternities in eyes full of light like hers, then there are still adventures to be had, worlds to conquer, and wishes to be made.

Make a wish, baby girl.  Make a wish.

Posted in Life Tagged permalink

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.


Making a Wish — 4 Comments

  1. Andrew had his wish granted by Make-a-Wish. They told us it was for children who have had to go through lots of medical trauma not just the end of life. His wish was in 1999. He had 11 years left to teach us more things. Andrew’s wish was to go Walt Disney World. That was a wonderful week for all 7 of us. We had so much fun as a family and we will all, always remember it.
    Enjoy Kyrie’s wish and don’t think it’s the end. There are still things to do and to learn. We love you so much. You are a good example to all of us.

    • I am so grateful for your wisdom and encouragement! And Andrew will always be the missionary who made sure I wasn’t lost!

  2. Happy anniversary. Kyrie is such a blessing to her family, even the make a wish will be one way she is blessing everyone. Enjoy all that you can. In the end it will be OK, if it’s not OK, it’s not the end. Everything we get to experience is meant to bless us, we just need to dry our eyes and look for the blessing sometimes.