My new friend Mr. BoneApart
Ashlyn is an “Outlier”
The wonderful doctors told us last Thursday that our little Ashlyn is NOT responding to treatment as 99.8 % of children do. She is an Outlier. In fact they have only been able to find 11 similar cases of children whose lungs and chest cavity have done what hers is doing…and as I understood it, none of those cases were here in the United States. Even those 11 cases are dis-similar than Ashlyn in that they were in cases where the person was suffering from a debilitating disease such as tuberculosis. Our little Ashlyn may be one in 100 million. That would be great if this were the lottery…and if I actually played the lottery. (If you want to skip the details and commentary…there is a short summary at the VERY end of this post)
That she is an outlier we have known almost from the first few moments of her birth. Of our 5 children she was by far the most restless baby. Ashlyn has also been the busiest, loudest, most insistent, most messy, most different, and dare I say it ..most adorable. She has pushed all of us closer to our limits and simultaneously she dug deeper into our hearts. When it’s quiet we wonder where she is, or celebrate that she is asleep. When she is awake we know there will be no rest, she will make herself a part of whatever we are doing and there is no escaping her attention and her need for it. At age two she could seemingly single handedly demand and get attention from at least 3 family members at the same time.
When she is asleep we miss her, and when she is awake there are times we wish she would take a nap. But napping has always been a far too passive activity for Ashlyn… she goes full blast until she literally seems to stop and then pass out. But even then, when she is sleeping Ashlyn is an outlier. In her sleep she is still busy and loud. And whomever’s bed she has crawled into will wake up bruised from her flops and kicks and complaining that she snores louder than Dad. But there is nothing cuter than her coming into your bedroom at 3 in the morning and holding out her arms for you to lift her into bed ….and no child ever smelled better or looked cuter laying next to you on a pillow than Ashlyn does.
They have turned off the pumps to see what her “outlier’ lung and condition will do in response. The tubes still remain in her chest…but unhooked from the wall. So we were able for the first time in 26 days to walk more than 6 steps from the bed.. we were even able to leave the room. It was a wonderful feeling just to watch Ashlyn as she walked down the ICU hallways. She was so happy to be on the move she didn’t want to stop. Her legs gave out long before she was ready to be done, or go back to the room. So after a brief rest, at her insistence, we were out the door again, and again, and again…each time going further and trying to go faster. She is now having no trouble in leaving the room but a pretty hard time returning to it.
She looks so good and is doing so much… that we don’t want her to have to do this operation scheduled for Wed. of this week. We don’t want to take the chance, and don’t want her to go through the process, the pain and the recovery of it all. I don’t want her or Rebecca or our family to do another month like the one we just finished. But we also don’t want her to have a hole in her lung or for her to get sick again because we didn’t do all we could to make her well. So we will continue to trust in God, and trust in these wonderful doctors who have saved her life, and we will continue to grow stronger and learn from this experience.
BoneApart was no Airhead...and we can prove it.
As for having an “outlier”…well we certainly don’t feel unlucky…. Who could feel unlucky to have an “outlier” like our Ashlyn. Who could feel anything but blessed beyond measure. Hanging out with these outlier types provides for high growth, high learning opportunities that a person might not get otherwise. So we wait a few more days…hoping and praying for healing and preparing for an outlier experience and what looks like at least another month in ICU.
There is no better place to be than surrounding someone you love with people you love. Then to also be surrounded by another circle of people who love you and your family is an amazingly wonderful feeling…. and outside of that circle seems to be another and another as people who don’t even know you…kneel and pray for you nto because they know you, but because they know your circumstance. We are surrounded by Angels… some who we can see and feel and touch…and others who we can only feel as we are touched by their faith and influence. Would we rather be home? Sure… but experiencing the miracles of an outlier experience can be a divine gift if a person is willing to recieve it.
We are praying that we will miraculously not need this surgery on Wed. But it’s very possible that the very surgery we want to avoid is the answer to all of our prayers that will help her get better. So we pray for the very best thing to occur to Him who alone knows what that very best thing is… and then we wait, in faith and with great hope, knowing that God hears and answers the prayers of His children. God knows all about outliers…. for after all was not his Son…. the ultimate Outlier.
Ashlyn takes her first steps outside of her ICU room.Therapy Dogs...bring a lick of happiness.
Ashlyn happy to be unplugged.
(Big Sister skips school to visit Ashlyn.)
We once again thank you for your continued faith and prayers. ~ Kirk Weisler and Family
Short Story Version (for texters only : ) – Lung remains partially collapsed due to unusual conditions… surgery scheduled for Wed. Hope it works, if not …last option is to remove part of lung.
