In the quiet moments between seizures and specialist visits, a mother witnesses her daughter who has Rett syndrome do something she thought was gone forever. Olivia stands. She picks up a yogurt melt. Small miracles that feel like lifelines. This post is a window into the raw, honest, and sacred spaces of parenting a child with complex needs where grief and gratitude hold hands, and hope never quite lets go.
You said:
With a sleeping oli in the back seat and a coffee in my hand I finally have a minute to catch up on my thoughts.
Last week my sister and I were able to take Oli to the Rett clinic in Colorado. We love that place. I love that place. I spoke to Dr. Benke by phone about every 2 months (or so) the last year and a half, so everyone was well up to date on oli’s health. We have game plans for everything. The biggest one being oli’s episodes – which we found out after our recent admission, are not seizures. Benke looked at the EEG and then looked me in the eyes and I could see the pain when he told me that what she is experiencing are “Rett spells”. That wasn’t the answer I wanted. He knew that.
Her brain and her body are both malfunctioning (for a lack of better terms). There is nothing that can be done for them, but hope that over time these Rett spells that she has at least twice a day, for sometimes up to 10 minutes at a time, lessen.
Her EEG showed that she has an even more complex EEG than is normal in Rett. So we will be doing another extended one to see if we can catch these subtle seizures she seems to be experiencing.
This appointment was a painful reminder that all we can do is treat her symptoms as best as possible, but not all the hard things have an answer or medicine to help.
While we were there Olivia did something she hasn’t done in years. She was able to stand completely on her own, without her knees shaking and buckling, with only my hands under her elbows. And then, she really blew our minds – when SHE RAKED a yogurt melt INTO HER HAND!!!!!!!
These were things I had made my peace with and was okay with never seeing her do again, but God 
We left full hope and some uncertainty – because a growing heart can feel both.
It was such a fun experiencing getting to have my sister meet these wonderful people who put so much love and passion into helping better the lives of those with Rett syndrome. There is truly no one like our Rett specialist.
It was such a quick trip, but we got to see a fellow Rett mama and I have so much more to say about her, but I am truly just so thankful for the amazing ladies God has gifted me on this journey of motherhood. No matter where life takes us, we will always be intertwined because of our girls, and Him 
Being oli’s mama has allowed me to experience some of the highest highs and lowest lows that life has to offer. But I know that we were meant to do this life together.
He knew that, and for that my soul cries out
Thank you, Lord