The last few days have been hard.
Mabel slept until 10:30 a few days ago and in my heart I knew that was not because she needed rest. When I gently and quietly opened up her bedroom door I could immediately hear the change in her breathing. Just like that, over night, she was full, and 'chesty,' taking deep, inhaled breaths. It was sad and scary, mostly because it becomes all so real in those moments. After all, Stevie literally died in the ER because he had some chest congestion. Children like Mabel are so unpredictable when it comes to sickness and it leaves a cloud of worry and fear over me every time something is new or something changes.
I am so thankful for hospice and the fact that with one text or call, I have a wonderful nurse in my living room who can help. Without even putting the stethoscope on, Jason knew she needed an antibiotic and we started her on it right away. That was three days ago and he said today that she sounds much better, although her breathing is still a little 'off' to me.
Today on our usual 5 mile walk, I got several texts from my mom about the woman shooter at the white house. The wind was blowing and in between updates I looked down at Mabel's feet jerking beneath me. I thought to myself how lovely these days are with her. Quite honestly, it's a solitude that I was never able to find in my life until now. I tuck her in that stroller, lace up my shoes and we walk for what seems like hours every day-just she and I, the quiet and the wind. We sometimes wave to people who pass by and sometimes I choose simply not to, because I am oh so very present in that exact moment with Mabel.
This past weekend our local car dealership, Baum Chevrolet, held their 8th annual car show and chose "Mabel's Able" as the beneficiary. Mabel and I were honored and thrilled to take part in such a special event with so many people who supported the cause. What I love most about opportunities like this is that awareness is being raised where it matters most-home, and community. And after that it inevitably stretches far and wide. What I also love about events like this is that people see Mabel and they will never ever forget her. They will always remember how beautiful she is and that her life means something big.
We want to say a huge THANK YOU to Baum's and to all who came out to participate. Without people who want to jump in and give back, we stand very alone. But when someone is willing to take a leap and do something big for a cause that is so worthy, it means everything.
To me. For other families.
We are just so grateful.
Here we are with Baum Chevrolet owner and family friend, Scott.
Mabel and Pawpy chose this car as "Best in Show" for the day.
We think this photo is pretty special. This was my Uncle Bo's corvet. He loved this car and he would have loved my girl big big big! Pawpy brought and decorated the car with balloons and photos of Mabel.
In the coming days something really special will be happening once again!
A 29 year old man (and now friend) of ours is currently running across America for the second time in 3 years to raise awareness for Batten Disease. Noah will be coming here sometime in the next week to meet Mabel and a few other families! Noah is busy running, walking and doing tons of interviews to get the word out about our children and we are so excited at this amazing opportunity to meet him!
To learn more about Noah and all he is doing please visit:
If you feel led to donate, please do so. This man is doing the most selfless thing a person can do in sacrificing so much of his life because he has a heart for these kids.
Please continue to pray for Mabel in the coming days as she fights this sickness.
Please continue to pray for Noah as he runs through Illinois and several states to come!