By Dawn Graczyk, Sunshine Mom
And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.
The Little Prince, Antoine de Saint Exupéry
Friedreich’s Ataxia occurs in about 1/50,000 people. Putting that into a percentage, that is 0.00002%. I think about these numbers, usually when I am considering our lives with unbelief.
Even after 5 years, I still find myself saying, “This is not possible. This can’t be my life.”
It would be easiest for me to call this a cruel twist of fate; a run of bad luck; a random consequence of DNA replication. If it is nothing more than an accident, no one is responsible for what is happening. Essentially, what would be easiest for my heart at times would be to say, “This is just chance. Simply evolutionary consequence.”
God is Intentional
I cannot look at my life without recognizing that it has been directed with great intentionality and care. Our Orlando trip included a timeshare stay that was given by a friend from Okinawa. Candice and I had little ones running everywhere in the time we were on the tiny island. We didn’t connect often. Neither of us had children with special needs (or at least, not that we knew of).
Heather arrived on the same island just as we were leaving. We remained connected loosely through joint friends and Facebook. Still, she showed up when I needed someone. She brought masks, hand sanitizer, and soap. When Marissa needed surgery in Orlando, she did not hesitate to take Anneliese for the day.
We were such different people on that island. Candice and I still had no idea what it meant to have medically complex children and were absolutely overwhelmed by those we had (all of whom in hindsight would be diagnosed with very special needs). In all truth, I enjoyed Candice’s company, but our connection was rather superficial. We ran in the same circles. We smiled and small-talked.
While overseas, just as I was leaving, Candice adopted two children with Down syndrome and autism. One had several heart surgeries. Candice’s heart was broken and then built back up repeatedly. I followed and marveled at her ability to maintain faith in a God who was not only great, but good. She shared her story. I brought her a meal once, when the babies were new.
And Then, Friedreich Ataxia.
I have amazing friends who travelled across the country to help me in that first year. Just to let me know I was loved. Just to fold laundry. They sat with me; they hurt with me; they let me yell and be angry. But they could not understand my heart.
Heather can. Candice can.
I had been watching from afar as Candice journeyed. I saw her as a champion of faith; a super-mom of some stature far beyond me. Now, as my heart crumbled, she shared her heartache with me as well. It wasn’t so much any words she said, or rather, typed. It was an unvoiced and inaudible understanding and connection.
Yesterday, Candice brought Sarah and Hannah to stay in a room in the same timeshare she booked for us. There was the initial awkward moment we’ve grown to fear, when we give our disclaimer: my kids are loud; my kids have no filter; my kids may say something shocking or inappropriate; my kid licks people.
After a couple good licks and a few awkward statements, that was it. Our lives were so inexplicably similar. It makes no sense. The origin of our children’s “abnormality” was not important. We all knew the feeling of being different. We had felt the emotions that come with letting go of dreams or not being accepted as we were. Our hearts spoke the same language.
Our time with Heather was also mystifyingly blessed. Our kids connected instantly, without the usual awkward phase. In fact, they’re souls were identical. They understood each other intuitively and bonded instantly.
For goodness sake, Ava and Anneliese are the only people I know who say “hanitizer” instead of hand sanitizer. These kids march to the beat of their own drummers, but together they make a fine melody. What are the odds that Heather would adopt seven Filipino children who would one day meet us in Florida and instantly understand us.
I cannot look back on such circumstances, which have happened against all odds, and not believe a hand greater than my own is writing a story. I don’t understand all the twists and turns, and I don’t know the ending. But this is intentional. It is designed.
On hard days, this belief is soul crushing. I want to know why. Why God, would you do this? WHY?
God speaks to my heart in ways words cannot express. My heart hears Him. My journey does not feel easier, but my heart lifts, knowing I am heard, seen, and understood. Then I believe it is easier.
What are the Odds?
Today, I learned that truly, words fail more often than not and odds are irrelevant when God is directing.
I learned it is what is felt in our hearts and between our hearts that truly connects us to God and each other. I saw God use “the least of these” to teach me an extraordinary lesson.
I type this as my girls laugh in the living area. Marissa stops to cough again, a cough that is terribly concerning. Yet, I know, no matter what happens, I have friends who will drop what they are doing and come to me. I knew this before they ever offered. I heard it with my heart.
I am grateful. I am blessed. I am moved. I am humbled. My heart is full, even in my fear and suffering. What are the odds?
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