Will has been playing "chubby cheeks" with Ellie all day long. She loves it and giggles and begs him to do it again and again.
I love how they play together.
I've been thinking a lot lately.
(all that extra time with nothing to do but play and think on the beach)
I keep thinking about hope and specifically, how desperately I want Ellie to walk.
I also want her to be able to sit.
I mean, she can sit. But she is not yet independently getting into a sit most of the time.
About 2 weeks ago, she sat up by herself.
It almost feels silly typing that. Isn't that what people do? Who celebrates sitting up.
She did it in therapy and we have worked so so so long for that skill.
I texted R and grandparents immediately to share the big news.
But then she hasn't done it again.
She did it once tonight.
And I tried repeatedly to get it on video and she tried so so so hard but wasn't able to get the strength and coordination correct to do it again.
It seems so simple yet it's not for our girl.
It seems so commonplace yet she works so stinking hard.
I so long for her to be able to get herself into a sit after she falls down to a roll. I long for her to be able to pull up.
I long to be able to lower her crib mattress past the high infant/newborn position but I promised myself I wouldn't until she was able to independently sit up. (stupid, I know.)
Someday. Someday it will seem normal and she will master this skill.
Someday I'll lose count of how many times she has gone from laying down to a sit all by herself. Someday I won't tell strangers that she is learning to sit.
We've all pulled together to work on her walking. Will is a great encourager and in the video above is showing Ellie how to use her arms to catch herself when she falls. (Her reflexes are weak so falling is a huge risk.)
He is her biggest cheerleader, often yelling, "Wow! Ellie, that's amazing!" when he sees her attempting difficult tasks.
R has started working with her in the evenings - using the scooterboard and therapy bolster to practice standing, build core strength, and learn to take reciprocal steps.
She tries so hard. She wears herself out working on learning to stand and sit and walk.
I was reflecting recently on my pregnancy with Ellie. I remember how people would often reassure me that she would be fine - sometimes even saying that they just "knew" God would let her live.
By His grace alone, He did.
But. I was fully aware that I was never guaranteed her life. Nowhere in scripture did I see a promise that babies would always live. Never did God promise me the life of my children. Our days on this earth are numbered for each of us. We are not guaranteed the lives of our children. I have never been so aware of this as I was in my pregnancy as I prepared to welcome a child I might say goodbye to soon.
I learned that my faith couldn't be dependent on my circumstances. I could have hope and faith in who God says He is. I could have hope and faith in who He said I am and my child is. But I could not base it on our circumstances.
How grateful I am for her life.
How precious is her life (& the life of every child.)
He hasn't promised me that she will walk. I believe she will. Her doctors believe she will. Her therapists believe she will.
There are no guarantees.
Just lots and lots of hard work, hours of practice, tears shed and prayers said in the still of the dark night and hope. A hope that refuses to fall prey to the doubts or the fears. A hope that refuses to give up.
I have hope.
I have great hope that one day, my daughter will walk. It may be assisted by her walker but I believe she will walk.
Sometimes I wonder. What will her gait look like? Will she struggle with each step? Will I have to always be aware of surfaces? Will she someday be able to master more difficult surfaces like snow or sand or grass? Will she be able to wear cute shoes with her splints? Will she always need the AFOs? How long will she need her walker? Will she learn to catch herself when she falls? Will I allow her the dignity of risk?
I can't really go there yet. Right now, I'll just focus on the basics.
Like her smile on the day she walks. It will be incredible. She knows how hard she is working for this. She doesn't take it for granted.
And that day she walks? It too will be by the grace of God - because walking is not guaranteed either. And when a child with limited range of motion in her joints takes a step? It's a miracle.
He shows me daily He is faithful. I have to lean in - to trust in His faithfulness and in how He has demonstrated that in my past. That is the only way to get through the waiting.
To go along with my hope, I think I'll order a side of party accessories I've got my eye on. Because I promise there will be a huge huge bash to celebrate this girl's first independent steps.
And maybe in the meantime, I'll go ahead and throw a party the day she really, truly masters sitting up.
(Planning celebratory parties fuels my hope - especially on days I struggle in the waiting.)