(Only sweet Myles would be smiling while getting a 24 hour video monitored EEG scan)
Dear Myles,
It's March 1st. Since you were born on December 29th, you technically don't have a two month birthday since the month of February decided to stop counting at twenty-eight. It doesn't quite seem fair that this particular month didn't make time for your 2nd month celebration, but, as you'll surely learn, life oftentimes just isn't fair. That is something we have been reminded of consistently during your second month of life.
The concept of "fair" was shattered as we watched you struggle with fear during your myoclonic jerking episodes following your vaccination. Life showed itself to be quite unbalanced as I navigated through days of scheduling and researching best practices for MRI's and EEG's and how to advocate for the least invasive tests possible. And when your dad and I watched you visit the emergency room twice and saw your tiny innocent body poked and prodded with wires and needles, the meter of "fair" appeared to be broken-- or rather, completely non-existant. This past month has reminded us of how uncontrollable life can be-- and when it's happening to the most fragile of people--our need for something greater than ourselves is highlighted in dramatic force.
This past month you started having myoclonic jerks-- little spasm-like episodes that look like seizures. After taking you to the emergency room and visiting with the pediatric neurologist, we were ordered to schedule a number of tests to make sure you didn't have a tumor or lesion on your brain or some sort of seizure activity in your brain.
The week between the scheduling and the administration of the first test held the most delicate tension as we prayed and cried and forced ourselves to believe the best. Our family and friends surrounded us with love and compassionate text messages and encouraging phone calls but, most importantly, they prayed fervently. We knew that it would be a miracle if you slept and stayed still throughout the loud MRI but I believed it was important to try without sedating you. The least amount of interventions possible has been our motto from the beginning. And, Myles, you did it. You must have had angels protecting you as you slept for over an hour in a large dome-like structure that would soon predict so many things about your future and ours.
That was yesterday. Today, on your makeshift two month birthday, I received a call from the neurologist office. "His MRI is normal," they said. "Both the brain and the spine are normal." My heart jumped.
That's it? I thought.
So many of the swirling emotions and questions and what-if's of the last few weeks were compacted into this 6 letter word: "normal". Your dad was so confused when I came into the room crying and told him the results. Although you still have another important test in a few days, this MRI held a heavy weight in my heart and mind. To hear the word "normal" seemed like such a stark contrast to the endless scripts and tests and potential problems we had been warned against over the past three weeks.
We could have just as easily heard different words on the other end of the phone this afternoon and we are praying we will receive the same positive news after your test on Monday. Myles, is it "fair" that your MRI carried the powerful diagnosis of "normal" when many other parents don't get to hear those comforting words? As we navigate the next few weeks of testing and follow-up appointments, as we continue to monitor you and search out alternative vaccination schedules and as we hopefully start to move from the quiet desperation of a medical daze into the common notices of everyday life, we have changed. We hold you a little closer, yes, but we also realize that you are ultimately held in the strong and powerful hands of a God who loves you beyond what we could even imagine. And, although it hasn't seemed "fair", we have learned a depth of trust to rely on the light shining directly before us-- a light that sometimes shines only on the next step and nothing else. It stands to reason that this trust may not have been possible without those moments when it felt altogether dark.
Although it has been a whirlwind of abnormality this month, one thing that is important to me is to make sure we don't treat you like a "sick baby". Sometimes I forget about the tests and surprise myself all over again when I look over and see you-- smiling, wide-eyed or wailing-- and I am reminded that you are simply a miracle in so many ways.
Over the last month, I've been overjoyed to notice the small things: the way you hold onto me when I carry you and your sweet sigh of relief when I pick you up and place your head on my shoulder, your first delightful smile and laugh and many more since then (dubbing you with the nickname, "S'Myles" :), our conversations when you squeal and it seems like you really want me to know something, your ever-telling eyebrows and how I can picture the same expressions when you're 16 and annoyed with us, how BIG you're getting and how often I have to stretch and "measure" your clothes before I put them on you and, most importantly, the emergence of your strong spirit. It is clear that you are beginning to know what you want and you have no problem telling us about it somehow. As your dad says, you even "talk us through it" before you start crying with your little noises and "words" that lead up to the cries.
Ultimately, I believe we will all be sharing about the trials and joys of this month in the future and we will remember the priceless lessons we've learned from a month when the scales initially appeared to be weighted unfairly. As for now, we continue to pray and we continue to trust that the greater measure of fullness in life is not fairness, but remembering that God is faithful-- and He gives us all the grace we need for each moment when it arrives.
Love,
Mom
Love,
Mom