oh my Ez

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

Baby Bean

Dear Bean,

Today you are 6 years old! 

I was just telling someone that your baby years seem so far away and I strain at times to fully remember all the details. You were put into a family that lives and breathes chaos. You had multiple sets of hands and arms that wanted to hold you even before you were born. Do you know that Kyre use to read stories to you when you were in my tummy? I remember wondering if you would walk on time because there was always someone that wanted to carry you.

Recently you told me that you didn’t want to have anymore babies in our house, after having your cousin Squish for a visit. When I asked why, you told me “because I want to be the baby”. You stood on the side lines and watched everyone want Squish, you included, but you decided that was a throne you did not want to leave for the Harney family.

There is something so soft and sweet about your eyes. I love it when we are in a room full of people and I scan it and find that you have been looking at me, waiting for me to find your eyes. Your face scrunches a little and you give me a smile that tells me that I have your whole heart. In fact, everyone in the family knows that I am your favorite and you don’t hesitate to tell your siblings that you are mine.

The doctors tell us that you are just going to be the tiny one. The growth charts were never something you aspired to beat Cayden on, your baby chub never reached Boo’s status, Ky may have weighed less than you at birth, but you have remained so small.

We laugh when people ask how old you are after you spill adult words out of your mouth.

You are a pint size boss that we all know.

I love hearing your thoughts, because you don’t wait to filter them out.  In fact, I think you are just like your daddy in that way.  You say exactly what you are thinking and don’t worry about what it might do to the listeners.

When you were told by Boo that you couldn’t have a boyfriend, because you are too young, your response was “You can’t keep love from me!”.  When your dad insisted that wearing heels to church in the rain would be a bad idea, you told him “not even the rain can stop me from wearing heels”.  When I told you to pack a swimsuit for a summer day with Naani, after days and days of beach time, you fought back and said “It’s my choice if I want to get wet and I don’t want too!”.  When your dad was in a conversation with me during a rushed church morning and not paying attention to you, you stomped your foot and said “Ricardo, I’m talking to you!”

You never lack knowing your desires.  You tell us what you want, how you want it and when you want it.  I wish that I was that bold to say exactly what I want, how much I could spare myself from frustrations when I expect others to just read my mind.

Even though the baby years seem to be slipping from my memories, I am so thankful that you are still showing us that you are just a little kid. You still need help tying your shoes, you need me to brush your teeth every night, you need us to cut your food for you and you need us to hold you when you get hurt.

Dear Veil Eden, I treasure the laughter that you ensue when you run your mouth. I love how you find the joy in every situation. I love that you don’t demand to be known in all your settings, but instead gently earn the trust of people’s attention. I love that whenever there is music playing I find you dancing, but baby girl I love watching you dance when there is no music, because I know you are listening to the music in your heart. I love how your tiny body still fits in my arms. I love your bravery and how you taught yourself to swim in May while visiting family in Arizona. I love that even though your big brother has turned into an unfriendly teenager, you still wield your powers and can make him do anything for you. I love that your sisters still fight over who gets your love the most.

To my sweet caboose, I am so thankful God gave you to us. Just thinking of you right now, I have a smile on my face and this urge to come and find you so that you will wrap your arms around me and say “there is my sweet sweet mama”.

Happy birthday Veil Eden, Bean, Veil-z, sweet thang!