Friday, December 30, 2016

my LaiLu

I had to say good-bye to one of the loves of my life today.

She's gone by a lot of names in her 14 years; LaiLu. Lodi dodi. Lala. Lollee. Piggie.

She loved to swim, eat sticks, run like crazy, bathe in the sun, slide down hills upside down on her back, attack swings, bark at balloons, dig in the sand for rocks, push her nose and fat head into her towel after a bath, burrow through the sand with her face & come up looking like a sand snowman.

She was only allowed on the couch when I took a nap (pre-motherhood, when napping existed).  As soon as I'd lay down she knew she could jump up and wedge herself between myself and the couch. She hogged the bed, until her arthritis got bad and I had to ban her from it so she wouldn't break a leg jumping off.  She prepared me to be a mom.  She kept me warm inside the bottom of my sleeping bag, camping in Washington's cool springtime. She was my companion each night and day, age 25 to nearly 40.  She was my office mate throughout most my art career.  She spent as much time in the car as I did until more recently.  She didn't need anymore cuddles than she wanted for the moment. But she was always there for me to hold when I needed to cry. I was never lonely because I've had her.  She gave me a desire to fight for justice for her breed. She proved to many that a pit bull is love. She was a big sister to Naya Rose. She let me dress her up every halloween. She was proud to show off her fancy boa.

Looking in the direction that she's normally sleeping breaks my heart. All the little things I did for her and because of her will be a reminder of her.

I'm thankful for her life and her love. I buried my face in her neck today and breathed in for the last time on this earth. And I know know know that she is waiting for me.  I can't wait to have her barrel her head into my lap again.

My irreplaceable dog, HalLailujah Barnes
August 5, 2002 ~ December 30, 2016

Friday, December 2, 2016

Generosity & Thankfulness

Thanksgiving was a week ago, but I still wanted to join in on the thankfulness!
Over the last 2+ years that we have been living with the difficulties surrounding Naya's brain injury, I have found myself saying again and again that I've learned about the generosity of people, which I didn't know existed so abundantly.  I've loved seeing how people use their interests and passions and turn them into a ministry for others. It's given me a deep appreciation for the people that think outside of the box of what are generally seen as the “most important” issues, and provide care, relief and FUN in the lives of people who have daily struggles.  I wanted to share some of the blessings we've received from others at little or no cost, thanks to their vision to make life a little easier for families like ours.  It's the things like these that help make our days less difficult, and more fun!

Beach Buggy - Stepping Stones for Stella 
Navigating the beach is going to be fun instead of a struggle!

OCs Special Spokes

Naya can cruise the neighborhood on her bicycle like the rest of the kids


A stroller like this makes getting in & out of a grocery store much
easier than needing to put the wheel chair together each time

Physical Therapy For All
We've got this high end mechanical wheelchair on loan indefinitely!

Cecily's Closet - Belly Bands 
A Hello Kitty g-tube coverup!

 Lend-A-Hand Therapeutic Riding Center
The owner of this center sought out a grant for Naya to get training weekly through 
the rest of the year. I love that Naya has her "thing" while all 
her friends are able to do gymnastics & soccer.

Ronald McDonald House Charities
From housing, to food, to haircuts, the RM House has
been a huge blessing to us multiple times.

Kimberlee Russell  & Riverview church 
Kimberlee puts on an annual Easter Carnival at the Ronald McDonald House
& creates dozens of Easter baskets for hospitalized kids

Caroline’s Carts
These are awesome to have available while shopping.  It's been a while
since I could cram Naya into the kiddie seat
of a shopping cart, and it's not easy to push a wheelchair AND
a shopping cart at the same time! :)
Inclusive Adaptive Parks have popped up all over, making it possible for Naya to swing, and even take her wheel chair up onto playground equipment.

And not to leave out my BIGGEST thank you to all of you, my friends & family, that have been there for us.  You helped me bring Naya home from China, cared for us through sickness & health, housed us, fed us, & loved us.  And Jesus, who is there for us every moment, who has done and WILL do miraculous things for my daughter. 

My DEAR family, and friends that are family, Naya's therapists, her school aide Marie, her teachers. All of you that donated money to our adoption fund, put on garage sales, created/obtained art for me to sell, sold t-shirts, made headbands to sell, threw purse parties, donated profits from business sales, massage therapy, sent gifts and sent meals and brought chocolate while we were hospitalized, and the list goes on, I wish I could remember every act of kindness as this moment to mention it!

This is starting to sound like the end of an academy awards speech or something. But anyways, though I complain regularly, I know in my heart that we have SO MUCH to be thankful for!

Tuesday, August 23, 2016

The Latest Good & Bad

School is back in session for Naya, and I will be back in school also in a week. It's the last semester to earn my bachelor's as I progress towards working in the field of speech therapy, so that is exciting!!

Today I was pleased to realize that over the summer I have become a little more capable of "living in the moments" of mom-life.  As summer was about to begin this year I worried that my fuse might not be long enough.  I live in such a strange harmony of utter thankfulness for each moment I have with Naya, as well as the rejoicing in any flash of me-time that I'm able to secure.  The summer's daily run-around was still ridiculous by my old standards, and at the end of each day I still had to breathe a sigh of relief, but with God's help it's actually been pretty enjoyable! Despite the circumstances I know I am so blessed to have all this time to grow closer to her.

I wanted to share how Naya has been doing physically. While she still has a long way to go to be able to walk or write on her own, she has come SO far from when we were discharged from the hospital two years ago. Cognitively she is doing REALLY well... she still experience some learning challenges, but works hard to keep up with her 2nd grade classmates.

Almost 2 months ago now Naya had heart surgery.  Her heart function had decreased significantly since her heart surgery in January, so pace maker wires were moved around in hopes of making the ventricle pump blood more efficiently.  It was expected that it could take weeks to see if this surgery worked. We were hoping at 6 weeks to see some significant improvement, but her recent echocardiogram showed none-to-slight improvement, which was very disappointing.  Her cardiologist has not given up hope that it could still improve.  If it doesn't, the medical team still has some ideas to try, but it seems there are not a lot of options between here and heart transplant.  People with Naya's type of heart disease know that a transplant is where they are headed eventually, but the hope is to put it off until their 20's, or even 30's. Having to get a transplant as a young child is scary.  Being eligible for a heart and finding one can be difficult.  I know of children that haven't made it through their transplants because of organ rejection.  I know that all the post-transplant drugs one has to take can take a toll on the rest of your body.  And I know that new heart usually only has a life of up to 20 years if all goes great.  So if she needs a heart one day and gets one, I would be eternally grateful for another child's sacrifice and gift.  But it is not my hope for Naya.

While this is all disturbing, I can thankfully say that most of the time I'm still living in peace.  Back when I discovered the severity of Naya's condition, I believe God gave me this verse for her, which I go back to for comfort. I believe God has big plans for her life.
"I will not die but live, and will proclaim what the LORD has done."  Psalm 118:17
And I'm forever thankful for my family & friends, and the community of supportive friends online that Naya & I have.  Knowing you all are praying for or thinking of her gives me peace as well.