On this day 7 yrs ago, I was staring past the calm pediatrician, looking at the dark winter sky and trying to shake all the scary thoughts running in and out of my head. My husband’s eyes were swollen and red from the tears he had shed, alone in the hospital bathroom, waiting for me to wake up. I had a lot of blood loss and kept passing out. During that time, Ezrah May Harney was being watched by concerned eyes, the call for a life flight was made. Everyone, was holding their breaths, waiting for the pediatrician who had cared for 1,000s of ketchikan kids to come and prepare this little family for news they were not ready to hear. Our newborn baby girl was very sick, tubes were stuck down her throat, wires attached to her skin, her little body was cradled by an incubator and not my arms that felt naked without my baby I didn’t know. Sleep they told me, sleep. I couldn’t imagine leaving her in the nursery, my breasts were leaking, wanting to feed a baby that could no longer eat due to fear her bowels would rupture. A big blue machine was wheeled in and the nurse helped me express milk as tears fell from my face.
The ambulance driver just sat in silence as I wept on the 5 minute ferry ride to the airport. The cord that had kept Ezrah and I connected for 9 months had been cut. She felt miles away from me. I had only held her for an hour as she nursed from my breasts within the first few minutes of her taking her first breaths, her only feeding she would have for weeks from me. I walked my tired aching body up the little plane. Tugged at my jeans that were slipping down my body from no longer holding Ezrah safely in my tummy. No new mom packs for a life flight to another state and hospital. No new mom anticipates she will be flying in the clothes she went to the hospital in, so that specialists can try and save her baby girl. No new mom thinks to bring a pair of pants to wear that will fit her drastically changed body in less then 12 hrs…
Ezzys story, something that I can tell you like it was yesterday. The color of the sky the morning we flew out, the striped shirt I wore, the bag of plain lays potato chips that was offered to me by the life flight nurse, the encouragement to sleep by the pilot, the head of surgery meeting with us infront of a big screen showing us what the tests revealed, the prognosis of a year living in the hospital, waiting for her to recover, the bathroom floor that we held each other and wept while 21 mo old Cayden slept in a pack and play that his tired body was placed in at midnight after his parents finally got checked into Ronald McDonald’s house…
Even in all the grief, terror, mental walls being built, living in a state of denial, nothing prepared us for the day we would hear Ezrah had a fatal lung disease, a disease that would tell her parents they would witness the death of their child before most ever would.
For 7 yrs I have watched and many times held my breath when Ezrah is in my presence. I have experienced it more now that I am watching her youngest sister grow and reach milestones, it is in those moments that I realize that I struggled with reality and the doom of her limited future. Long ago, it is as if I mentally buried her, yes, I did, to protect my heart from anguish, I told myself I would never recover from.
In all the chaos of her diagnosis, Richard entered the world of social media, still a very new thing 7 yrs ago. Facebook was barely used then, crazy right? It was still so new and people were still holding onto the dinosaur MySpace.
In his searching he met a young Tlinghit woman (a rarety in the native population), in her early 20s that was living with Cystic Fibrosis, two words that were becoming part of our daily language. I remember him coming home from work, telling me he had reached out and met this woman through a support group for families with cystic fibrosis (CF). I shut him out, I couldn’t handle hearing the scary, I didn’t want to know the pain, hardship, the things that broke her, broke her family all because of those two little letters. Seeing my pain, seeing the walls go upset again, Richard retreated and never mentioned his discussion again with this young CF woman…
Fast forward to the beginning of 2016.
A CF research magazine arrived in the mail. I will admit, sometimes I read it front to back, other times, if I am in a rough spot with the disease that has shaped and sifted our family, I will file it away for when I am in a better place. The cover immediately caught my eyes, it was of a young woman running. The name, her story, as I read it, I realized it was the very woman who had received and responded to a scared dad, trying to find hope in the hopeless.I am a very aware person of personal boundaries. They matter to me, maybe because my boundaries have been set to protect my heart, I am so proactive in making sure I don’t break others.
I searched for the young woman, found her on FB and in an act of unusual courage reached out to her and asked to “friend” her. I thought I had to write up Ezzys story, tell her about us, because why on earth would she remember a conversation she had had almost 7 yrs ago? Nope…she remembered us, she remember our girl.
One thing that sets this fatal disease apart from others is the isolation that comes with it. CF patients can never be around each other, they can’t go to camps, events, sit and play at a playground together, be hospitalized together. It’s even a risk for family members to be around a person with CF, through research, they have found the deadly bugs that attack and scar the lungs can be carried on family members. Ezzy doesn’t get to sit in a room with other kids and talk and see someone just like her. She is ushered quickly to the side, given a pager and the staff at her CF clinic stagger and assign rooms so that interaction is nearly impossible…because isolation means protection.
It is insanely lonely as a mother raising a child with this deadly disease. There are no support groups for me to go to, no sitting over coffee with another momma, because Ezzy is the only child to have this disease on our small island of 13,000 ppl. I know the feelings I have as a caregiver and I can’t imagine the things that go through my tiny little fighter.
My mom recently blessed Richard and I, with an opportunity for us to travel with just Veil. He had a presentation he had to give for his job in another city and I was to tag along to rest, relax, enjoy the hotel life of no laundry to do, food to cook, or 4 other little children to consume my day. It sounded like heaven. I was ready to just disappear and get to know my little Veil Eden and have lots of quality time with her.
All of a sudden, I turned to Richard on the ferry ride over to the airport and told him I wanted to reach out the woman who we had reconnected with. I asked him if it would be strange, he told me to do it. I sent the message, told her we would be in her home city within a few hours. I tried giving her an out, telling her I knew it was short notice, but if she had even just an hour we would love to meet her. I put my phone on flight mode and tried to tell myself that I didn’t cross her boundaries…
The last day of our little get away I found myself restlessly sitting in the car, outside the meet place. Wondering, praying that I would hold it together.
You see, this woman, beautiful, married, a new mother, sat across me, with such a gentle calm spirit that it brought forth every fear I have faced over and over again. She just ran her first marathon, yes you read that! She ran a marathon and had a lung infection leading up to her big day she had trained and but months and months of dedication to. This CF warrior, now 30, the age expectancy that was dropped on us after we heard the two letters that would be Ezzys everyday, she is the very image of everything I have prayed for and in my darkest refused to hope for.
Being raised with a faith, being shown that the bible has an answer for everything, I have tried my hardest to let go, to accept the fact that it says, none of us are promised tomorrow. That just because Ezzy has been given a prognosis, doesn’t mean it is necessarily true.
I had to remind myself to not stare intensely as she spoke and shared her experiences with us. I tend to be an all in person, paying attention to everything. My senses go in overdrive. But I kept trying to suck those tears back in, I fought them, I kept telling myself “pull it together Sarah, she is here to share her story, not to see that you still can’t handle Ezzys.”
Just when I felt like an idiot for not being able to reign in all the things racing through my brain and the feelings that kept overflowing, she looked at us and acknowledged how crazy it must be to meet an adult with CF, one at her age. There, that moment was when I thanked the Lord for giving me courage to ask her to meet us.
We talked, asked questions, I even recall smiling as she recalled a time in her childhood that mimicked something in Ezzys. Soon the room that felt so stuffy, with all the weights I have been carrying for almost 7 yrs, felt lighter.
This woman said something so small, she probably doesn’t remember or hold much value over it, but it has been on my heart and completely changed my perspective of being Ezzys momma.
Her momma would say to her, when she would challenge her parents in the therapies or adhering to the relentless care plan CF demands, “it’s ok, there is always tomorrow”….
“It’s ok, there is always tomorrow”…
Baby girl, I am sorry that I have grieved your tomorrows. I am sorry that I have feared your tomorrows. I am sorry that have let tomorrow be a word that I dread. After this special meeting that happened with a young strong and brave woman, I pray you will look up to her when you are overwhelmed with the loneliness. I pray that I start looking forward to, with joy, your tomorrows. I learned in that meeting how much you need a momma that can pick you up, see past what the doctors say, and tell you that you are more then CF, that your life is meant to make the tomorrows worth waking for, not to dread.
This young woman found a man, one that wasn’t afraid of her story, that wanted to be the meat of her story. They married, to top it off they have been given a priceless gift of being parents. Ezzy, what this woman showed me is that I need to keep dreaming of your tomorrows, to not hold you back from something just because CF says it can’t be done.
Ezzy girl, you are 7 yrs old today. 7 yrs old…how quickly these years have flown by. How much you have grown in strength and understanding. You recently woke up, started your therapies on your own, nebs and all, without being told. I have witnessed you come home from school on most days, grab your homework and start your therapies on your own. Your routine, vastly different from the rest of the family and your friends is not something that takes away your joy everyday like it use to. It’s as if, in the last few months, something changed within you, a maturity has arose and you fight not because you are told to, but because you choose to fight the battle. You in your 7 yrs of wisdom have decided you won’t let CF win, you won’t let it ruin your day, even if it means you are stuck to machines, stuck to the couch when everyone else is running around.
I watched you march up to our pastor in a packed room of adults and kids, he bent down to hear your little voice. You shared what was on your heart and he responded. You know what you want and life and don’t let fear hold you back.
Ezzy,there is something very special about you. You have no idea how much I hear people tell me they love watching you grow or better yet acknowledge them.
Your black and white, matter of a fact personality has been stretched this school year. You have found a friend that makes you embrace the silly, a friend that loves to laugh, a friend that doesn’t see the world that same way. I witnessed at your school Christmas concert how much you need this friend. As I held my breath, heard my heart pound while I watched you dance in a packed auditorium, no planned choregraphy, I let the tears come. I let them come, because I heard the lord say ” see Sarah, she is loved, I love her so much, I am giving her the people she needs, the people who want to make Ezzys today’s and tomorrow’s full of life. You and her are not alone on this journey” You danced your little heart out and for me, that was the best unexpected gift I have received from you and there have been many on this journey of being your momma. (Ezzy is the one in the black dress and updohairstyle)
Sweet Ezzy, here’s to 7 yrs of watching you grow and turn lemons into lemonade, I can’t wait for all the tomorrows you want to chase. Your dream of being a worship leader just makes my heart pause. I pray that you will learn to worship God in the ups and downs of your life, that your heart won’t be scarred but healed by the one you made you for a high calling.