Writing has been so therapeutic for me! I have been writing. ALL the time. I wasn't sure how much to share or where to share it, but ultimately I decided that my website would be a place I could share what it has been like for me these pasts 9-10 months. This is real. This is raw. This is me becoming vulnerable.
Today's appointment with Evan was quite a drive. In order to get seen sooner rather than later with one of the very few pediatric cornea specialists in DFW, I had to settle for being seen in the Fort Worth office or wait almost an entire month extra for a Dallas opening.
Now you may be thinking, a month? That's not too bad. But the reality is that I already had to wait almost 2 months to get an appointment to begin with. Apparently, little kid's brains are so powerful (too powerful) that keeping Evan's eye in good condition is critical in keeping his eye sight. We have been told that children of his age, when they experience eye trauma that basically makes there vision terrible (20/150 in his case), that the brain has the ability to just use the stronger eye, further weakening the injured eye until the brain eventually turns off the switch to that eye and makes him lose sight in that eye forever. So all the eye drops (every 5-10 minutes for months) and daily patching of his good eye that we have done have been in order to avoid vision loss in the eye, especially after having radiation damage that just needs time to heal.
Last night, the office called me to "remind" me of his appointment. Funny-- because I am his walking calendar--his personal assistant. As I asked for the exact location, the receptionist on the other line says "Oh, it's over by all the hospitals."
My heart sunk. I knew I would have to drive through the streets that just a few years ago I drove through for 5-6 days in a row when I found out that Eric was found unconscious. I had to drive through the bridge where I first heard my older brother tell me that "unconscious" was actually that my younger brother's heart had stopped for 24 minutes before he was "revived". I knew it was going to be a vulnerable drive.
Driving into Fort Worth today, I was listening to my personal playlist of all the inspirational songs that I have adopted as our "soundtrack to cancer life". And about fifteen minutes into the drive, I was bawling my eyes out. Bawling from the emotions from reliving the memories of that drive two years ago, and with it reliving the gut wrenching panic I had never known before two years ago. Crying because I am still in shock and denial that this is our life. And crying because my emotions were the only way I had left to praise the Lord for letting Evan be where he is today: in my arms, warm, snuggly, alive and NED.
With every word I listened to and tried to sing along to, the more intense my tears poured out. "I will send out an army to find you in the middle of the darkest night, it's true. I will rescue you." And He has.
I was so sure that my brother would be a walking miracle. I was so confident that he would live. And when we had to make the tough decision to take him off life support, my world was shattered. I was so depressed for months as I grieved the loss of my friend, my long time roommate, my childhood play mate. I was very protective of him, and I had to learn to say goodbye. It still hurts me deeply to think about it or write about it. But I knew then that I would still choose to love God and painfully accept that the miracle I prayed for wasn't answered the way I wanted it answered.
I then reflected on my faith since the beginning of diagnosis. I have not once doubted that God is still good. I still cry when I sing "I know that your are good" at the top of my lungs or mostly sing it in the depths of my silence, because I can't say it without crying profusely. I know He is Good. But my faith was no longer this "He is good, my miracle will be granted, life will resume." I have known that He is good and having faith is important, but I have also known through my brother's death, that He is still good, even if my heart ends up in a million pieces shattered on the floor. I have felt the vulnerability of what it means to say, I have no control. My prayers may not be answered how I want them answered. I know that God is powerful. I know He is ABLE. But I have felt the very real and painful fear in not knowing if He will.
When your child has cancer, you don't know if your heart will become ashes from the devastation of loss or a heart that survives with just broken pieces that could be pieced back together, never quite the same--still beautiful nonetheless, just different.
It was heart breaking to drive past the hospital I hadn't seen since my brother passed away. I drove past the Emergency Room I optimistically walked into the week after Easter two years ago, drove down the street my husband drove me for several days as I cried in fear and sorrow, drove past the Cardiac ICU building with the windows I would stare out and watch the trees blow. I drove away, leaving the hospital in my rear view mirror, remembering the feeling when I left my loved one in a hospital knowing that he was never coming home.
I haven't had time to let myself grieve with everything going on. My mind has been in survival mode and that would be too much to process while trying to survive through the ups and downs of pediatric cancer. But today, I was forced to let myself grieve and miss my brother.
Evan's appointment went really well. Despite his cornea being dry, Evan's vision (today) tested at 20/20! The cornea specialist did say he was surprised to see his vision so well so soon post radiation. Evan never ceases to amaze me.
I spent the two hour round-trip drive contemplating how my life has changed so much in less than 2 years. But more so, I thought about my relationship with God, and how much has been healed in my soul from being a mom to a kick-ass Warrior and his amazing Super Sibs. I thank the Lord for the good days, I seek him in the hard days, and some are really hard. But He is Good, and He has blessed us immeasurably, and I will fight every day for my kids like the Lord has done for me. Fiercely, unapologetically.