About fifteen minutes ago I put William in his crib and turned to retrieve his toothbrush for our nightly routine. As I turned he called, “No weeve me!” (No leave me!)
I paused for a moment to make sure I processed those sounds correctly and took a deep breath as I soaked his tiny toothbrush. Images of him sleeping in a hospital bed as he received chemotherapy at 9:00, 11:00, 2:00, then 4:00 blood draw and 6:00 morning rounds flooded back. About two minutes after his teeth were scrubbed he rolled over, put his tiny thumb in his mouth and snuggled into bed. I was grateful that he knows I won’t leave. I was even more thankful for my Father who promised never to leave or forsake me. Then it occurred to me that as far as the blogging world goes, I have left you for a few months. Many of you are following the latest happenings on William’s Warriors’ Facebook page and are encouraging us in person, but as far as the bearing of my soul goes, I apologize for the silence.
To help you understand why, picture this: You have waited for years for a grand opportunity to see something amazing. When you finally encounter it, you don’t want to miss a moment. Imagine walking through the Louvre and turning to cut-up or scroll through Pintrest- not likely. Everyone is instead enthralled. You wouldn’t stare at the heavens through the Hubbel Telescope and take frequent breaks to text or check e-mail. No, in that moment your eyes and heart are occupied. Lately as my precious sons are meeting milestones I have waited YEARS for, I am otherwise engaged.
William began his first days of school this week. He goes in the morning while Jonathan goes in the afternoon. For the first time since Jon was 10 months old, I get to spend time with JUST him. On the first day he asked to to have a date at Chick Fil A. Today we had teaching time. Afterward he grabbed my hand and pulled me in to play with him instead of letting me do the dishes. We played, laughed and tickled, just us. Missing these precious moments in his first few years were a sacrifice I simply had to make. Over and over the teachers, ‘experts’, etc. told me that these trials were making him resilient. They did. They also wounded him MIGHTILY.
Many of you don’t know, but Jonathan’s neck was wrapped in the umbilical cord during birth and he lost oxygen for quite a while afterward. The MRI shows evidence of it. He has faced delays, particularly in communication that sometimes resemble ASD. While battling William’s diagnosis and difficulties, I watched my firstborn change and shrivel away, as many kids do when a child with difficulties enter the family. Now that we are a united family, Jon has SURGED ahead. The quiet child of the past is speaking in sentences, obedient, learning and very helpful. The terror of the house is finally a JOY to me. It was a LONG time coming. He is finally getting to be the Jonathan that was always in there. He is friendly, compassionate, helpful, and loves to laugh, cuddle and read. Moreover, he once hated school and church. Now he ASKS to go and prays aloud often. The child who ignored his brother and clearly demonstrated resentment now cares for him, gives high fives and looks out for William. The hopes of my heart are unfolding in front of me, dispelling the fears that it was not going to happen. Great difficulty is ahead, but seeing this child often feels like MAGIC.
There is a popular show on called Once Upon A Time that many of my friends watch. A key phrase in the show is “Magic always comes with a price.” That is a bit of what is happening. The price of hours and hours teaching a child to walk is an unspeakable joy when he stumbles into his first steps. To feel the magic of hearing your child pray, bid you goodnight and tell you, “I love you Mommy!” when he barely spoke for three years is the price of hours of speech, thousands of tears and lots of difficulty. To gain the extraordinary, the cost will also be more than a typical cost.
To gain hope, joy and a peace that I will be carried through anything cost me letting go of the hopes and dreams I had for my life. I now dream new dreams. I’ve had to decide that my desire for an amazing God-written story is more than my desire for comfort. That decision is one I have to make daily. The price is high. To gain everything you have to give everything. To gain your life you have to lose it first.
For years the cost has been steep as it has been intermingled with wonder, heart-changes and sanctification. Some of the cost was an expensive down-payment for all that we are experiencing now. For many families this looks typical. Family dinners together, kids who see each other more than once a month, going to school with peers who encourage, making friends, feeling a part of something glorious– but these things were not in my life last year. The cost of cancer was high, but oh, the reward is priceless. Most parents who have kids with special needs, illnesses and challenges will tell you what they gain outweighs the cost and that it is worth it– and it is– but the price is also very high, my Friends.
Forgive me for remaining quiet as I watch my babies grow, learn, play and take hold of all God prepared for us; I am sure you understand. I’m watching miracles happen in my house. That’s even better than magic.