On Tuesday night I had been asleep for a couple of hours when I was woken up at 130am by Alice and those words every mother fears hearing in the night “Mommy I vomited”.
I spent the next half hour cleaning up (both her and the bathroom she had almost made it to on her own) before she threw up again. This was to go on all night. Clean and dry, she dozed in my bed between bouts of getting sick again – 5 times in 5 hours.
I promised her I would stay awake and watch over her.
I had my bedside light on, my book at hand and her snuggled into my shoulder.
I tried to read, but found myself wide awake with my mind racing. Earlier that evening I had caught up on a friend’s situation with her family and it was all I could think about.
My beautiful friend Lindsey was in America with her husband and three daughters. I had watched years ago as they adopted their middle daughter from Kazakhstan. So many of us friends felt privileged to read along as she chronicled the journey to Kazakhstan online. We laughed at the limited and strange food they ate in nearby shops (thanks to pre-Instagram photos), worried at the difficulties they faced, and cried with relief as they brought Camille home and nourished her body and soul so she began to thrive. We also watched and learned about her health issues that would be a challenge for them all.
It might surprise some, but not her friends, that they decided to go through it all again and bring another little girl home. Disappointed that changes in Kazakhstan laws meant they would have to go elsewhere, they went to China and soon enough Evie joined their family. Three beautiful, dark haired daughters from three countries now bound together forever.
Lindsey and Nathan have huge hearts and I have loved hearing about their family over the years.
Now they are fighting to get their daughter the care they want for her.
On June 29, 2012, Evie was diagnosed with Moyamoya Disease, a rare progressive cerebrovascular disease, and will need two brain surgeries. Being America, there is the all too common battle with insurance. Thanks to researching the disease, they discovered one of the top 2 surgeons for this disease is based at a hospital three hours from their home. He is considered “out of network” and the insurance company will not allow them to use him to save their daughter. They are fighting through the system right now, but are preparing for the final decision to be negative.
Since Evie is at extreme risk of a stroke (to the point that they have been told to prevent her crying as it could cause one) they are planning now for a last resort of self-funding the surgeries rather than accept the doctor the insurance proposed. They need as much help as possible to be ready with a down payment for the hospital. If by a miracle the insurance company changes their mind any money raised will be passed on to to researchers or a family in a similar situation who need the funding.
I am here to ask for your help – be it in the form of prayer or donations – every little bit of money, strength, faith that can be gathered together will help this wonderful family. Share this post or the Caring Bridge page if you can or want to. I chose to use this space to share their story because I have been amazed over the years with how the power of the Internet can bring about miracles and deliver people what they need in a crisis. In this global age $5 donations add up fast when your audience is beyond your own back yard.
You can read all about Evie, her condition and her family here on their Caring Bridge page. If you want to see this beautiful family please take 3:30 to watch the slide show on this fundraising page and you will hear the beautiful music that goes with it and understand my reference to “beauty in the world”.
As I sat there in my bed with my own daughter I was thinking of my family and of Lindsey’s and found myself reaching for my phone at 4am and sending her an email to let her know we were thinking of her. I felt grateful to be there to care for my own family, to clean them up when sick, to watch over them when they felt fragile, to wake up day after day with them. As Linds says in her Caring Bridge journal :
With Evangeline, we’ve realized the fragility of life as we know it. Every moment that we get to see her or spend with her is a gift. I get up in the morning and I don’t have to make her breakfast; I GET to make her breakfast. I don’t have to do her hair; I GET to do her hair. This morning, she ate a chocolate granola bar and came to me to get cleaned, and I actually paused to think how lucky I was to have that moment with her. She was smiling and happy but messy…and I GOT to clean her face and her hands. We spent the entire day in our PJs listening to music and dancing and playing together. Today, I GOT to do that.
Cherish every moment with your kids (or any loved one for that matter). Life changes in the blink of an eye (or an MRI). You don’t want to regret any of it.
So this week I am grateful for the opportunity every day to care for my family, to love them, to wipe their face or their tears or the paint they leave behind when crafting. They are my beauty in the world.
Edited to add: another friend has created a petition to try and get the insurance company Kaiser to do the right thing. Your signature can help - please go here and sign the online petition. Thank you
Updated 25 July: Thanks to everyone’s support and this news story that was about to air on TV in California kaiser came through in the 11th hour and have allowed Evie to be seen at Stanford. Thank you for your support in sharing the story, praying and donating funds – every bit has helped. They now face the battle through 2 surgeries.
What are you grateful for this week?
Find your simple,