Thursday, May 15, 2014
MEET EZRA: REFLECTING ON A YEAR
There were the earliest days that should have been filled with joy and happiness and getting to know our sweet boy and establishing our family of four, that were instead filled with so much sadness, so much worry.
There were so many sleepless nights, fearing that Ezra might spontaneously bleed to death because his platelets were so low. Peering through the darkness, watching for blood...from our newborn baby.
There was blood dripping onto floors of hospital rooms, after too many failed attempts to draw a lab or place an IV.
The vomit. Oh the vomit. There were SEVEN months of vomit, often multiple times a day. Of all the horrible things we've witnessed, this image might haunt me most.
There was the time Ezra had an IV in his head, and I had to sit there with a nurse, and slowly and gently pull out one hair after another in order to remove the adhesive covering before we were discharged. I will never forget Ezra's precious hair, torn from his precious head, clinging to my fingers...all this after quite possibly the worst night of our lives. It was probably one of the more minor things that Ezra has experienced, but the night Ezra had to have a platelet transfusion when he was only a month old was excruciatingly painful, stressful, and scary. Maybe it was the six attempts it took to place an IV, the doctor who exuded anything but confidence for our unique situation, the many forms you have to sign to acknowledge the complications that can arise from accepting someone else's blood products...or any number of factors that were outside our control that night. If I could erase that entire night from my memory, I would in a heartbeat.
There were entire days spent on edge, waiting by the phone for test results. Somewhere along the way I lost track of the number of days spent this way.
There was frustration like we've never known after months without answers...the topic of many a blog post.
There was the battle to keep breastfeeding.
There were too many procedures requiring sedation.
There was the painstaking task of recounting Ezra's entire medical history every time we had to meet a new doctor or medical professional.
There were nights spent desperately searching on the internet, trying to put the pieces of the puzzle together.
There was finally hearing the words: "We think we finally have an answer. JMML. This type of leukemia has a 50% survival rate...you'll be meeting with the transplant team next week. Ezra's best chance for survival is if he is as healthy as possible when he goes into transplant." (These words came directly after three days of fever and vomiting).
There was the time we sat in an exam room and tried to explain to our three year old that we had to rub a pokey "toothbrush" on the inside of his cheek because it would help baby brother. And then we had to imagine what it would be like if our three-year-old was a match and would have to go through with the bone marrow donation. We had to imagine both of our children in pain.
There were days spent desperately searching for the light at the end of the tunnel and struggling not only to put one foot in front of the other, but just to get out of bed in the morning.
There were days we felt like we were walking through the valley of the shadow of death, questioning if our tiny and frail little baby could possibly survive aggressive chemo and a bone marrow transplant.
There was coping with the reality that life was happening all around us while our lives would be at a complete standstill until Ezra was healthy.
There was a hole being surgically placed in our baby's belly.
There was coming to terms with the fact that Ezra's best chance for survival was testing positive for a genetic disorder with its own list of medical problems.
There was googling "Noonan Syndrome" and seeing incredibly troubling, outdated information before finding current, much more helpful resources.
AND THERE WERE MUCH, MUCH HAPPIER MOMENTS.
There was peace that passes understanding.
There was mountain-moving faith.
There were miracles.
There was gratitude.
There was the realization that a marriage and love could actually grow stronger amidst adversity.
There was my mother-in-law who faithfully met us at every single children's hospital appointment so that she could watch big brother, keep him away from the germs at the hospital, and allow us to focus on getting help for Ezra.
There was my mother who began coming over faithfully every single day after work so she could lend a hand while we figured out how to administer Ezra's chemo and other medications...and who more often than not, still stops by after work to lend a hand.
There was my sister who hung out with Judah during our frequent visits to Ezra's primary physician (pretty serendipitous that her work is right next door to the doctors office).
There was my niece who has helped us by folding more loads of laundry and emptying the dishwasher more times than I can count.
There was my dad who has prayed more fervently than anyone I know.
There was my father-in-law who shaved his head and raised money to support childhood cancer.
There were literally hundreds of prayers from family and friends.
There were meals that showed up at our front door.
There was cash handed secretly to us at church with a whisper that we should use it to fill our gas tank.
There was a week of fasting and prayer by many of our church family that immediately proceeded Ezra's first normal CBC.
There was kindness from strangers.
There was Josh's amazing company and co-workers.
There were full-blown community fundraising efforts.
There was a gifted photo session (at the time we thought it might be the only family photos we'd have a chance to get with our sweet boy).
There were words of encouragement from old friends and friends of friends and friends of friends of friends.
There was Kasey.
There was discovering an amazing support group of other NS parents just like us, including our "3 in a million buddies."
There was our oncologist telling us about the doctor she knew with Noonan Syndrome.
And there was going on to learn about a Ph.D. student, and a pharmacist, and wonderful parents, and so many other AMAZING people living with Noonan Syndrome.
And there were small strides, and big strides, and normal lab results, and weeks without vomit, and and and, there was a first birthday! A day that we feared might never come.
This really only scratches the surface of the year that was. But I needed to write this post, to close this chapter, so that we can start a new one. So we can start living again.
We are ready to continue spreading awareness about JMML and Noonan Syndrome.
We are ready to gather more stones and face whatever Goliaths come our way.
We are ready to fight for and advocate for Ezra to get the help he needs to be the happiest, healthiest, smartest boy he can be.
There will be days when we are tired and weary and we will have to reread the posts we've written this past year to remind ourselves of that fire and desire to be brave and courageous again.
And God will give us the strength to face another day and conquer another challenge.
What a year. Here's to many, many more.