Have you ever found yourself sitting between prayer and a miracle in your life? I have felt stuck nuzzled between the brokenness that leads to prayer, and the hope that a miracle will replace the narrative of that brokenness. It is where I have found myself since visiting Ainsley, a 15-year old sepsis survivor and double leg amputee, in the hospital. When we shared her story back in May about her asking for donations to visit her and for a medical scholarship, we received an outpouring of love and generosity from so many of you in our community, allowing myself and one of our other team members to visit her in the hospital.
So often when met with difficult situations that those we care for are enduring, we hope that we can just champion them to get to the finish line. I remember feeling this way as my sister was in the last days of her battle with cancer. I did everything in my power to help get her to cross the finish line of healing. Her healing came in a different form and I found myself lost in the emotion of not being able to change the outcome.
The Weight of a Choice
With Ainsley, I knew I was walking into her and her family’s story in its rawness. I prepared myself the morning we went to the hospital with prayer. In addition, Noelle, who is a huge part of the Beautifully Flawed team (although you might not ever see or hear her name), and I thought through the gift we would bring to the hospital to greet her. Many items were donated from incredible stores on Kauai (thank you Māmalu Sunscreen, Aloha Exchange, and Kilauea Fine Jewelry!) along with all the best Target finds one could want or need in the hospital. We tried to think of it all through the eyes of a 15-year-old. Yet all of our earthly planning could not prepare us for the pain of this young lady.
As we walked into her ICU room and sat next to her bedside, she looked at me with tears, barely being able to get the words out, “God can’t use me like He has Bethany, I’m not good like she is. I did this to myself.” Her brokenness due to the choice she made in a moment of weakness filled the room in such a way it was hard to even swallow. She had lost so much, and still, her thoughts towards herself were so harsh.
I leaned in and embraced her thin, weak hand into mine and softly held it. I did not want to rush in with words to rescue her, canceling out the depths of what she was feeling. I wanted to sit with her in the pain, and as she mustered up the strength again to repeat those words, adding she was no hero, I said, “You are alive, you are a miracle, you are somebody’s hero. Your story might not be Bethany’s story, but your story can be used to save lives.”
We might not all receive platforms others have, and our story might be the consequence of choices made in the moments we did not think most clearly, but that does not suspend the purpose God has for your life. 1 Corinthians 1:27 says, “But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.” In other words, God is not looking for people who have it all together, often those are the ones who don’t see their need for God. He uses us in our weakness to spread a message of hope.
We sat for hours with Ainsley talking, and listening, there were a couple of laughs, a few tears, and opportunities to answer questions about limb difference. We shared about the retreats and shared stories of others who also thought God couldn’t use their stories and the amazing doors he has opened for them. It was a beautiful time with her. That evening we took her family out to dinner in hopes to give them a much-needed break. As we sat at dinner, we saw the resilience of a family unit and listened as they got vulnerable sharing about what they were facing. It was a beautiful time to love them well along with eating some great tacos. I was encouraged by their strength and the steadfast love parents have for their kids.
Persistent Prayers
The next day was hard as Ainsley’s mom was feeling under the weather and was not going to be at the hospital due to it being too dangerous, potentially spreading anything to Ainsley in her weak state. She was still on a respirator and every breath was a challenge for her. When we walked in we could see the elevated emotions of her mom not being present. Her grandma welcomed us but warned us of the emotional state she was in. We came in and tried to engage her in some art as she enjoys art, we then shared the retreat videos with her from the past retreats, along with the promise we would get her to a Beautifully Flawed Hawaii Retreat in 2023. She liked that idea!
After a little time, she seemed weaker than the day before, and it was concerning. She could not move beyond the grief of her mom not being present which only added to all the emotional trauma she was facing. I felt helpless knowing nothing I could do at that moment could bring her peace. I asked her if I could pray for her and she agreed, and once done, I knew it was best to give her space. We left the hospital that day on a low. Our hearts are extremely heavy for this precious girl. So often we find ourselves saying, “All we can do is pray.” I often wonder if the “all we can do is pray,” mentality actually weakens our prayers? Prayer is powerful and many times it is the avenue to miracles. So in those defeated moments, and in the weeks following, instead of taking to social media, or writing a blog, I went into my prayer closet and have been steadfastly praying.
Progress Is Not a Straight Line
Ainsley was extremely sick when we were with her. I was not sure she would pull through. Since those days we spent with her she has had a couple of close calls. I spoke with her mom the other day, and this was the update she shared:
Hi!! So much has and hasn’t happened in the last month. Ains was doing pretty poorly and seemed to be deteriorating… super weak, couldn’t maintain weight, always air hungry.
An attending came about two weeks ago who sedated her, switched her to a hospital-grade vent (vs. home vent), and used the sedation period to use the data from the machine to get the correct support. It ended up she needed way more support than they were giving her. However, she had three times she was at death’s door that week and last week so her body is also very traumatized.
After they woke Ainsley from a medically induced coma early in the week, her numbers seem to be improving, mainly in terms of the CO2 levels in her blood. Pre-coma, they were consistently in the 90s and this week have been more in the 60s and even into the 50s, which is something we haven’t seen for a long time. It seems sedating her was productive in terms of switching her ventilator and getting her breathing more efficiently and comfortably. The better blood gasses seem to be reducing her headaches, heart rate, and nausea. She has also been able to gain some weight (up to 68 pounds now), which has been a struggle since mid-April when she was 59 pounds.
Even though the team lifted her sedation, she’s still on some heavy narcotics to keep her comfortable. She is still on continuous drips of Fentanyl and Ketamine although these doses are decreasing daily. She’s been able to have fully interactive conversations since last Sunday, but does get tired throughout the day so is napping quite a bit. She is also suffering from pretty severe panic attacks. Her body has been in acute distress for over 4 months and this week we are seeing more and more spikes in her adrenaline. This seems to be triggered out of nowhere and almost idiosyncratic and thus it is very hard to understand exactly what is causing them.
The hope is that she can continue to improve as they wean the meds, especially with her lung function. Thank you to everyone for your continued prayers and support.
We are between prayer and a miracle at this very moment. I believe God has kept sweet Ainsley alive for a reason and has an incredible plan ahead for her story. We need prayers going in her direction. We need prayers to move to a miracle. So I ask you to join us in prayer for this miracle girl. In addition to prayers, if you feel led to write her a card, her mom said that would be great! We will have all letters mailed to us so that we can vet them and then send them on to Ainsley. Her 16th Birthday is coming up, and so I know these cards will mean so much. You can send them to:
Ainsley c/o The Beautifully Flawed Foundation
PO Box 223663
Princeville, HI 96722.
Upcoming Events in San Diego, CA
Mike Hess Brewing Bill Roundup & Charity Brew Night
Lastly, I wanted to share about two fundraisers we will be having in two weeks. The Mike Hess Brewing Co/Taqueria is currently doing a round-up at all 5 of their restaurant locations throughout California for the month of July, which is benefiting The Beautifully Flawed Foundation. On July 30th we would like to invite you to join our team at their Imperial Beach location in San Diego for Charity Brew Night, as we host a Hawaiian Luau (live music, fire dancer, and hula dancers) along with a silent auction (including a signed Bethany Hamilton surfboard!) in hopes to raise funds to continue the current work we are doing as a non-profit, along with a move into new areas we feel God is calling us to.
Brunch & Bubbly
In addition, we are also hosting a private fundraiser brunch on Sunday, July 31st at the Westin Carlsbad Waterfront Tower. This small brunch with our team will provide an intimate setting to learn more about the organization, along with some of the special touches our retreat attendees get to experience. This is a very limited event, so don’t wait to get your tickets. All funds from the brunch will go towards our two upcoming retreats we will be hosting at the end of October.
Make Incredible Things Happen
Help further our mission and programs that support young people living with limb difference or those who’ve experienced traumatic limb loss by making a tax-deductible donation.
