Grateful for “beauty in the world”

Post image for Grateful for “beauty in the world”

by Debra Dane on July 13, 2012

in Gratitude

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,

Deb

Print Friendly

{ 35 comments… read them below or add one }

Shari July 13, 2012 at 8:31 am

Oh Deb, what a heart-aching situation for your friends to be in – the ‘system’ can really suck.
I’ll be reading their story, sending prayer and making a donation – you are right in saying every little bit counts and I challenge everyone to go without a cup of takeout coffee today in order to contribute something.
xxx
Shari recently posted..I’m going on strike! Who wants to be in my picket line?My Profile

Reply

Debra Dane July 13, 2012 at 2:16 pm

Thank you Shari – that is such a good way to think of it – give up a coffee or other small “treat” and donate it and watch the rolling effects. I swear if everyone gave $5-10 it would add up fast! thank you again xx
Debra Dane recently posted..Slowing downMy Profile

Reply

TaraDL July 13, 2012 at 10:02 am

This week, I’m grateful to be a part of such a wonderful community that spans the world to be “there” for each other when we need it.

Reply

Debra Dane July 13, 2012 at 2:17 pm

I know hon – i am so glad we are all still connected so many years later, with kids that are no longer babies… grateful to them for bringing us women together (so i can quack to you ; ) xxx)
Debra Dane recently posted..Grateful for sisters and timeMy Profile

Reply

Nicci July 13, 2012 at 6:56 pm

thanks found it

Reply

Lindseyb July 13, 2012 at 10:29 am

Deb,

beautiful post, beautiful words, beautiful sentiment.

thank you for getting our story out. whether it motivates people to donate, pray for us or just makes them appreciate their day more than they normally would have, you’ve done a great thing.

lots of love
lindsey

Reply

Debra Dane July 13, 2012 at 2:44 pm

Love right back to you Linds – and to Nathan and those beautiful girls. Know that so many people are thinking of you right this minute (whatever minute it happens to be by you – when you are awake in the night someone somewhere is awake too since we are spread so far)
Debra Dane recently posted..Grateful for sisters and timeMy Profile

Reply

Faye July 13, 2012 at 6:48 pm

Such beautiful words Deb, brought another tear to my eye for Linds.

Linds, everything about your story inspires me. You are someone a aspire to be! Much love xxx

Faye xx

Reply

Tracey @ Bliss Amongst Chaos July 13, 2012 at 11:16 am

My heart breaks for your friend and her family, Deb.
It is bad enough finding out your child has to have lifesaving surgery, without all the ridiculous ‘red tape’ that can go with it!
I will be checking out her site, and helping where I can too, as well as sending heaps of long distance love and prayers.
xx
Tracey @ Bliss Amongst Chaos recently posted..Photo A Day July ~ Day 12My Profile

Reply

Debra Dane July 13, 2012 at 2:17 pm

Thank you Tracey – it means a lot and I know Lindsey feels the support from across the globe!
Debra Dane recently posted..Starting to return to work + career Mums book giveawayMy Profile

Reply

Meg July 13, 2012 at 12:21 pm

You summed up the huge hearts and generousity of the Burror family so well! And yes–their situation has made me so grateful for the LOOONG summer days at home with my 3 kids. Shared this on my FB to spread their amazing story.

Reply

Debra Dane July 13, 2012 at 2:42 pm

Thanks Meg – I am sure Lindsey is boosted by each share knowing more people will be thinking of them and helping in whatever way they can
Debra Dane recently posted..Moving from paper to digitalMy Profile

Reply

kirri July 13, 2012 at 1:13 pm

I’m always beyond grateful for my family…even on my bad days.

This kind of news just tears me up. I wish I could have given more x
kirri recently posted..Quiet girls can be fierceMy Profile

Reply

Debra Dane July 13, 2012 at 2:18 pm

Thanks lovely – it all helps – even the positive energy and support xx
Debra Dane recently posted..Grateful for laughter – my latest ab workoutMy Profile

Reply

Sinead July 13, 2012 at 3:13 pm

Beautiful words Deb and yes isn’t it amazing that that wonderful baby community is attached with superglue!! Love being a part of it xxx

Reply

Debra Dane July 13, 2012 at 6:28 pm

definitely superglue – don’t forget it xxx
Debra Dane recently posted..Grateful for laughter – my latest ab workoutMy Profile

Reply

Nat - Muddy Farmwife July 13, 2012 at 3:54 pm

Such an amazing post and such a reminder to be grateful for what we have and to make the most of it while we have it. Thanks for sharing their story, we are praying for them.
Nat – Muddy Farmwife recently posted..A Week of GratefulsMy Profile

Reply

Debra Dane July 13, 2012 at 6:29 pm

I am sure they appreciate your prayers as much as any money – the strength in numbers is great and is uplifting! xx
Debra Dane recently posted..Grateful for sisters and timeMy Profile

Reply

Aroha @ Colours of Sunset July 13, 2012 at 4:38 pm

Every good thought and prayer is with them. My goodness, I can’t even begin to imagine what it must be like for them. My heart aches. I just want to shove this story in everyone who is against “Obamacare”‘s face. This should not happen to anyone, let alone children!
Aroha @ Colours of Sunset recently posted..Friday The 13thMy Profile

Reply

Debra Dane July 13, 2012 at 6:31 pm

I know – at least make sure all children have what they need always right? xx
Debra Dane recently posted..Moving from paper to digitalMy Profile

Reply

Nicci July 13, 2012 at 5:14 pm

I would like to make a donation for this family , is the caring bridge page where I do this? I couldn’t seem to figure out if the donations made there were going TO the family.

Reply

Debra Dane July 13, 2012 at 6:34 pm

If you click the link above to the slide show fundraising page there is a give button on the upper right part of the page and the donations go to them from there. Thank you so much for your help and kindness xx
Debra Dane recently posted..Simplify your life {Week 27: home routines and systems}My Profile

Reply

Nicci July 13, 2012 at 6:57 pm

thanks found it now

Reply

Julie July 13, 2012 at 6:48 pm

A lovely grateful post Deb. Reading stories like this reminds me how precious life is and how lucky I am to have my little family. I hope your friends get the insurance company to pay the medical bills, or receive enough money through donations.
Julie recently posted..Knitting up a storm (ok, just a square) for a good causeMy Profile

Reply

Debra Dane July 15, 2012 at 7:38 am

Thank you Julie – they are presenting their case to the insurance company next week – hoping the collective energy is reaching Kaiser and they realize the right thing to do
Debra Dane recently posted..Starting to return to work + career Mums book giveawayMy Profile

Reply

Sharon July 13, 2012 at 9:14 pm

Deb you are a wonderful friend to share this. I remember the family from the forum and read what Lindsey wrote. I will send a donation as it baffles my brain that an insurance company should have so much power over the life of a child.

Reply

Debra Dane July 15, 2012 at 7:38 am

Thank you Sharon – I know it definitely baffles the brain doesn’t it?
Debra Dane recently posted..More creative ways to encourage kids to try new foods + giveawayMy Profile

Reply

Jess July 13, 2012 at 10:51 pm

This brought me to tears. I am so thankful for these reminders to treasure every moment, and to let the small stuff go … to be thankful for normality while we still have it. My heart hurts for your friend, and I hope her daughter recieves the care she so deserves.

Reply

Debra Dane July 15, 2012 at 7:39 am

Thanks Jess – I am so guilty of getting caught up in the small stuff and am also grateful for the reminder xx
Debra Dane recently posted..Moving from paper to digitalMy Profile

Reply

Tat July 13, 2012 at 11:03 pm

I hope everything goes well with your friend and her family and what a great reminder to us all to cherish every moment.
Tat recently posted..Grateful for time with my childrenMy Profile

Reply

Debra Dane July 15, 2012 at 7:42 am

Thanks for your good wishes – every thought and prayer is important to the family as they feel the collective strength right now, knowing so many people are wishing them well.
Debra Dane recently posted..Grateful for laughter – my latest ab workoutMy Profile

Reply

Ellie-Leo July 14, 2012 at 4:11 am

Lovely post, and a reminder to make my donation. Followed the amazing adoption story on bw and was gutted to read about Evie’s illness. Such beautiful pics of the girls too
Ellie x

Reply

Debra Dane July 15, 2012 at 7:42 am

Thanks Ellie- our BW community is strong no matter how many years have passed
Debra Dane recently posted..Slowing downMy Profile

Reply

Laura caughey July 20, 2012 at 10:50 pm

Beautiful post I can’t stop thinking about Evie and her wonderful family. I too will be making a donation and will pass this on for others. Prayers and love xxxx

Reply

Kim from 3 peanuts July 23, 2012 at 1:59 am

I don’t know Lindsey but she asked me to post about sweet Evie and I have. I am trying to get an update and the caring bridge site is now private. Our family is praying daily and so are my blog readers. A few have asked how things are going. Is there any way you can pass my e-mail onto Lindsey? Thank you.

Reply

Leave a Comment

CommentLuv badge

{ 1 trackback }

Previous post:

Next post: