God has blessed us immeasurably with family, friends, and a church body who love us more than we deserve. They have carried our burdens with us and have done so much to shower us with love and support as we go through the ups and downs of caring for Marcus. We couldn’t have asked for more love from more people. I could devote a whole week’s worth of posts to all the ways our friends and family have cared for us. They have fed us, housed us, prayed incessantly for us, emailed us, sent us thoughtful cards, visited us, and cried with us.
At the same time, there’s a yearning to have people in our lives who are going through what we’re going through. People who know the exact heartache we bear. We’ve found great friends through the Joubert Syndrome group and through Marcus’ school & therapy, and God has really met many of our needs through them. But among people we already know, there is not one family who is raising a child with a diagnosis similar to Marcus’. At our church of 100+ kids, Marcus is the only one facing his types of challenges. Considering the statistics, this is a very rare situation.
We would never want any of our family to have to bear the struggles of special needs and we don’t wish this type of suffering on any of our friends. Yet why is it that I desire for someone to go through the trenches with me in this world of disability? I feel that God created us to have this longing for shared experience; to have a common union with others who are going through the same thing. That must be why there are so many support groups out there for people to find others they can relate to.
I could sit in a room surrounded by hundreds of close family and friends and at the same time feel that nobody can truly understand the weight that is on my heart. I’ve often felt like an alien and desperately lonely in large groups because there isn’t someone who can say, “I know exactly how you are feeling about your son right now because I’m going through it too.” But for some reason, God has sovereignly and lovingly not provided that for us at this time.
The truth is that everyone in this world can feel this type of loneliness at some point in their lives. We all have some issue that we feel is far removed from the common experience. Yes, I have a son with disabilities, but I have never known the trials of losing a spouse or a child, being in and out of the hospital, battling infertility, living in poverty, facing discouragement on the mission field, living under abuse, or being persecuted by family members for my faith. Amongst a group of people where I feel like no one truly understands me, the person to my right could be feeling exactly the same way.
Yet what I’ve realized is that having this “lack” in my life is actually a blessing I couldn’t have asked for.
O Lord, you have searched me and known me! You know when I sit down and when I rise up; you discern my thoughts from afar. You search out my path and my lying down and are acquainted with all my ways. Even before a word is on my tongue, behold, O Lord, you know it altogether.
When I have a thought that I feel like no one around me can relate to, my Lord is right with me and He is intimately acquainted with all the aching crevices of my heart. When I can’t explain why I’m sad, my Lord is here and knows my heart better than I even know it. When I feel like an alien because my experiences are so different from others’, my Lord reminds me that He created me and understands my thoughts from afar. And not only from afar, but my Lord also became a man so that He would be able to know the whole realm of human disappointment and grief.
Knowing this gives me a sense of great privilege. It reminds me of intimate secrets between a husband and wife that nobody else is privy to. All these experiences of “No one in this room understands me” can now turn into “The Lord knows exactly how I’m feeling right now and He is with me and loves me.” This is a unique encouragement that I am so thankful for.