They say that there is a 1 in 100,000 chance of having a child with Joubert Syndrome. So what are the odds that there could be another family affected with the same syndrome who lives 15 minutes away, who also share the same ethnicity and share the same faith?
When I first heard about the Kim family, Marcus was 6 months old. Our OT at the time, mentioned that there was a pair of siblings who were diagnosed with Joubert Syndrome and went to the Blind Children’s Learning Center, which was the school that provided all of Marcus’ therapy. Some people on our Joubert Syndrome online group also told me about this family, so I kept my eye out for them when we were on campus for Marcus’ treatments.
The first time I saw Joshua was a very emotional experience for me. He was with his classmates and while I was sitting with Marcus a few feet away from him, I couldn’t stop staring. It was the first time I saw another child with Marcus’ diagnosis and it was as if I saw another child who belonged to me. Only the Lord knows how I kept myself from running to him, picking him, and holding him tight against me.
I eventually got in contact with his mother and the first time we met was when Marcus less than 2 years old. It was such a refreshment to my heart to meet someone who knew EXACTLY what I felt and what challenges we faced. She was and still is someone I look up to so much. She has not one, but two children affected with JS, as Joshua has an older sister who is also diagnosed. I still remember her words when I met her for the first time. I was still in my first 2 years of grieving over Marcus’ diagnosis and here she was, with two affected children, and she said, “Sue, I don’t compare my children to other typical children anymore. I accept them as they are and I trust in God.” Those words were like a river a water to a thirsty and weary soul.
A few weeks ago, she and Joshua came for a visit and this time, I did hold him tight.
He was strutting his new walk, as he learned to walk independently this past year. Isn’t that amazing? We are hoping Marcus will literally follow in his footsteps soon.
Marcus was much older this time around and it was a thrill to see the two of them play with each other, chase each other around, and even participate in some male bonding.
And it was an encouragement to see Jaewon again too. She is my hero.
I always wonder, “Will Marcus have friends? Will he have someone who will be by his side?” It looks like he will not only have a friend, but someone with whom he can share a deep and mutual understanding. Yet another unique and kind demonstration of God’s love for us.