Today snuck up on me

I was walking the dog, feeling the fall breeze hit my face that made my eyes water a little, when I realized something.

Ezrah May, today is a really big day!

We have been anxious for almost a year when we knew you were leaving behind your safe little bubble at your Elementary School. For 8 years you were around the same faces, countless people took trainings so they could administer your medications at school. Teachers became backup health aides and chose to be another advocate for you, sending sick kids home and increasing hand hygiene in their classes. Students would volunteer discreetly to move away from you in the classroom when they knew they weren’t feeling well. The office ladies got so many phone calls from your momma telling them you would be late to school because the burden of therapies had gotten the best of you that day.

And here you are, entering into the Middle School world. No longer will you have just one teacher and one class to adapt to your various needs that Cystic Fibrosis can bring. Now you will be spending your time around kids that don’t know anything about your fatal disease. Now you have a TON of educators and staff that had to sit in an hour-long meeting with me to discuss what it means for you to be in middle school.

My heart began to race as all this hit me this morning. The not faint memory of holding you in my arms with the dark early morning sky, listening to the machines beep, trying to not move you because I didn’t want to have to ask yet another nurse to come and help me with all your hoses and wires. It was just you, me, and the Comforter. The cries of a mother, the fervent prayers that life would be abundant for you even with the scary words Cystic Fibrosis. I would look you over from head to toe. I would study the curl of your hair, your little tiny fingernails, your soft little tummy covered with a massive incision from your life-saving surgery. I didn’t want to miss a single detail of your precious life.

It was there that I began to understand what it meant that you were not mine.  You were and are God’s child.

It was there that God began to invite me into the beautiful, scary, heart-wrenching and faith-building dance of being your momma.

“you will stand over her grave”….words that echoed in the silence, no amount of loud machines could drown it out.

Please let me see her first steps…

Please let her go to school one day…

Please let her play soccer, the sport that brought her parents together…

Please let her grow strong and big…

Please let her have friends that won’t be scared of Cystic Fibrosis…

Please, God, please breathe abundant life in her…

During my walk this morning God gave me the memory of you the night before your first day of preschool.  I was a freaking mess.  I don’t know how your dad and siblings survived me that week, really. 

You had insisted on wearing new boots that you had gotten for school before school started.  They ended up getting covered in mud because you couldn’t wait to wear them.  So, there was your dad washing your boots for you the night before school so you would have shiny new shoes again.

Sweet girl, do you know what you did last night?

You came to me at 9:30 pm with soaking wet white shoes and asked how you could dry them in time for school today because you had refused to wait and save them for the first day of school and got them dirty…even though I told you.

That memory flooded my vision as I passed your old elementary school and then I heard a little whisper.

“Sarah, its because she grabs hold of life and doesn’t take it for granted, she is fearfully and wonderfully made”

Ezrah May, no truer words have ever been spoken over you. God gave you the tenacity you would need to embrace each day like it’s the last one. Often, I worry about your inability to wait or reign it in sometimes. You want to feel it all, taste it all, breathe it all in. You don’t want to be told what something is like, you want to know it for yourself.

To my miracle girl, I am smiling and tearing up at the same time, seeing how God has been faithful. How He met a scared 25 yr old momma on the Giraffe wing at Seattle Children’s and heard her cries for you.

I am proud of you and you know what, I am still proud of you even if you make mistakes today, if you stubbornly don’t take your pills today because you are embarrassed and don’t want to explain what you are doing at lunchtime.  I am proud of you even if you shrink back and fight tears when you realize you are going to miss school because you have a nasty lung infection down the road this year.  I am proud of you for the choices you are going to have to make this year as you figure out having a new support system, and how to handle the large amounts of new germs and bugs.

You know why? 

Because you are grabbing hold of today and not worrying about tomorrow. You have been fearfully and wonderfully made. You are so loved by God. And baby girl, God has some big plans for you. I know there are some hard parts, waking up at 5:30 am so you can have your treatments done in time for a new early school start is hard, but you have got this. God has blessed you with abundant life…it’s a pretty good life isn’t it Ez?

Love you sweet girl, wow, love you sweet young woman