This is my favorite picture of Steve and the kids. It was fall 2013. Alex is in his school uniform, and Julianna looks like she’s participating in a roller derby.
It’s actually her school outfit, of course. Her helmet and ankle orthotics tell me that she was still able to use her walker.
Things are obviously different now — so different.
In the midst of this life-altering week, we realized that it is Father’s Day weekend. Lousy timing.
“We’ll deal with it later,” Steve said. He was right, for there was much to focus on this week.
Yesterday, we threw Julianna a tea party worthy of all the superlatives: magnificent, fabulous, stupendous. I know that it made her proud, and details will be forthcoming.
Today, it is Father’s Day. We will deal with it in this space by sharing the words that Steve delivered at Julianna’s tea party: her celebration of life. ( emphasis is mine )
The last 18 months have been a gift from God. Miracle after miracle.
18 months ago, Julianna got another cold, after having just gotten out of the hospital. We were all bracing for the worst.
But she bounced back — and not in weeks, but in days. It was almost a non-event. Other colds and challenges would come, but she continued to thrive, even though her body was failing her. Julianna’s disease was like a prison for her body.
I can only attribute this to a fundamental decision to stop trying to fix Julianna ourselves, and put our faith in God. It became abundantly clear that there was nothing we could do to save her from her disease. And we were driving ourselves into the ground trying to do that.
That doesn’t mean we gave up on medical care. Certainly not!
What we got from that 18 months was healing and growing as a family. We got to enjoy and love on Julianna, and her spirit and imagination thrived because of that love. We got to share her love with the world.
She loved getting toys, but not for why you might think. It goes much deeper than that. That toy was a tool for her to get someone to play with her. It wasn’t necessarily the playtime either that she needed.
What she needed was the DAILY reaffirmation of our love for her through spending quality time with her.
– creating an interaction,
– creating a connection,
– creating a moment
that we will continue to cherish
and demonstrating to her we still love her.
She thrived in that love. Her light burned so much brighter, and the world has seen it.
A heartfelt thanks to those who’ve helped us through this. Your portion of light has warmed our hearts and helped more than you can imagine.
Those connections are important.
Whether you’re a prisoner of a disease, lost in the wilderness of life, or tossed about on the sea of disillusionment, there will be a Light to follow. It may be hard to find, but it is there.
A Light founded in love giving forth peace.
Create that connection. Make a moment.
Last week we were living in Psalms 142. But now the prison is broken open and Julianna can soar on Angels’ wings.
Set me free from my prison,
that I may praise your name.
Then the righteous will gather about me
because of your goodness to me.