We, well mainly myself was super anxious for Ezzy’s CF appointment last week. I had been holding in my anxiety about the new chapter of Ezzy’s life at school and trying to adjust in every way possible to the complete opposite environment that Ezzy was now living in. I desperately needed affirmation from her specialists that we were doing everything right, not overlooking things as we learned how to let her grow and spread her wings without us. We found ourselves going from one end of the spectrum to another in a matter of days. I needed to hear that she was ok and have ideas and ways to cope with sickness now and in the future.
As you might recall, when I last traveled with Ezzy to Seattle I was a happy pregnant lady and had processed the fact that our traveling days would be ending again since a new baby was soon on its way. I learned so much from her, I even blogged about it, if you don’t remember it was titled “if you let them, they will teach you”. I came back and accepted that it would be daddy for the next few years holding her hand, talking with the team, taking her to Target after her dreaded throat culture, while I manned the other ones at home.
We soon realized that it would work for me to squeeze an appointment in since Nana heard Ezzy’s heart loud and clear and decided to purchase a ticket to meet her team.
Three generations headed off to a warm, sunnyish Seattle for some appointments and some much needed shopping!
I was beginning to dread the flight with Ya’el. She is the first child to refuse a binky. She pukes, gags, cries, and spits that thing across the room. She will stick out her bottom lip and tell me with her eyes “how dare you!”. I am adjusting to being a human binky, I hold her close, melt as I realize that I am the only one/thing that can soothe her…then there are the days that me and my equipment can’t handle another session and I am contemplating sleeping on the couch away from her. Thankfully sweet baby Ya’el was covered in prayer by her daddy and brother and she slept the majority of the flight!
As we climbed into the taxi after waiting for an hour and a half at the airport…Farwest Taxi, we are no longer friends…I soon realized that my idea of holding the baby off was not as brilliant as I thought. We soon had a baby that could not be soothed, crying her eyes out on I-5 in bumper to bumper traffic. So what did this momma do?!? I grabbed the nursing shawl, threw it over the side of the car seat, leaned forward as far as my body could go buckled in over the car seat and gave her what she wanted. Ezzy was so disturbed and perplexed and shouted at the top of her lungs, “what are you doing momma?!?”. My mom kept the taxi driver talking and had no clue what I was doing in the back. Soon a tired, full baby was asleep and little 4 yr old girl was shown that you CAN nurse your baby anywhere and do exactly what God made your body to do no matter what limitations you are currently facing!
I was beyond angry at the taxi service, but then was informed of a horrendous car accident that had taken place on I-5, I heard a gentle voice say, “sarah, in my time, in MY time”. I thanked the Lord for his hand of protection, for the delayed taxi and for the safe arrival to our hotel.
We were met by Ezzy’s best friend Lexi and the girls soon found their hands entwined together and held their heads high as they walked to stores and restaurants with their matching masks. Ezzy’s heart was full knowing she had her friend there, a friend who is walking a difficult journey of her own, a friend who has made Ezzy not feel alone in this big world. You could see their smiling eyes peeking over their masks wherever we would go and their confidence amazes me.
Ya’el, Ezzy and Lexi were champs as we spent a day shopping in-between appointments. We dragged them all over Seattle, in and out of stores and everywhere we went their were giggles and smiles. We were able to enjoy special treats and experience a small dose of city life.
My mom informed me her hunger to live in the city was sufficed and no longer tugged at her heart, I on the other hand grieve and leave a little piece of my heart whenever I leave Seattle or Phoenix. This small town girl was made for city life…wonder when God will acknowledge that…
I was able to show my mom all the places we went and areas in the hospital we would circle when we lived there. I retold her stories of people, patients, nurses, and specific memories of moments that are permanently engraved in my soul. It is hard to not get sentimental when you walk through your trauma over and over. I just cling to the fact that we come and go and aren’t living there day in and day out. My mom blessed us on our trip, Ezzy needed her nana to distract her, play with her while I cared for a baby not in her environment. The first night they feel asleep holding hands…I totally got it and an thankful my mom loves my kids in a way more then she ever loved her daughters, which is an immeasurable amount of love.
Our final day of appointments was a typical day, 5 hrs of sitting in rooms, ushered here and there and getting arm pokes and throat cultures. My mom had to take ezzy for labs and told me that as she held our brave fighter on her lap, her hands soon were warmed with the sweat pouring from her little armpits. She didn’t cry, she didn’t fight, she did what she had to do and soon met me on the other side with her full tummy, sleeping sister. We closed out the clinic with some art therapy with Nana and thanked God we extended our trip one more day so we could go rest before our flight.
After labs I found myself fighting the need to be quiet and process all the information that was shared with us. I had other people relying on me to be present and I began to talk things out with my mom, super uncommon for someone like me who doesn’t speak until I have mentally worked things out…
You want to know what happened?!?
You want to know why we made prayer cards?!?
Our CF doc told us he considers Ezzy to be asymptomatic…this is HUGE news!!!! Meaning that yes, she does gets sick, yes she needs antibiotics from time to time, but she is not the normal Cfer. He told me that most kids have a baseline cough, tummy issues, and sickness. Ezzy doesn’t. She blew the best numbers they have seen on her pulmonary function test. After having quite a few bad gunky coughs this year, she has weathered them with no lung damage!!! Our GI doc a few days prior called her “chubby”, since most CFers are very thin and yet she is thin, I have been terrified of what very thin looks like. A lot of CFers have g-tubes because they can’t keep the weight on. My Ezzy girl can’t be compared across the board, she has been set apart, and finally I am ok that she is in a category that few are in.
We ran into a mom that has followed our journey thanks to FB, one that is having to walk a journey with her child and we shared battle wounds. Even though the battles are things we have had to endure with our babies, we still know deep within our souls that God was/is in them. As I shared with her the recent victory for Ezzy, I found myself saying that there is something different about her. How God has her called for a higher purpose, one that I still don’t understand, but one that he is using her story to glorify his mighty power. I have too many times put him in a box and he keeps breaking it to pieces. I told the mom that it doesn’t mean those that have lost the battle, those that are in it, or those yet to come aren’t being held by our maker, but that God is whispering it over and over again “Sarah she is MY child, I will take care of her”.
Thank you to all of you who have been praying for her since starting school, those who put her on your daily lists when she entered the world sick and in need of immediate healing. Yet again I am realizing that Ezzy was made for this kingdom work, that through watching her overcome things that the world tries to claim over her, God is ahead of her saying “my child you are fearfully and wonderfully made”, go and show the world that through me All things are possible!