This is just a little story giving you a glimpse of our family over the last year. I wrote it for the sMiles4Sammy annual fundraiser weekend.
Having a medically fragile child affects not just that child, but the entire family. Everything is brought into question. Why him? Why us? Why suffering? How will we ever manage? Is God still good?
When Nathan came barreling into our lives we immediately knew something was wrong. Within two weeks it was confirmed. He was diagnosed with a rare genetic abnormality that affects one in 50,000 babies born every year. The geneticist told us that he likely won’t walk, talk, and that we will probably be living with an adult child unless we decide to put him into a group home. Everything we read about his syndrome said that he may not make it through his first year. It was devastating.
After a few scary episodes where he needed to be resuscitated, we reached out to the Palliative Care Team at Dell. Almost immediately they connected us to sMiles4Sammy. sMiles4Sammy, along with our close friends, family, and Church community surrounded us, prayed for us, encouraged us. Supported by their love, we slowly started putting one foot in front of the other and began to move forward.
Both my husband and I agree that Nathan has brought more joy to our lives than we could have ever imagined one year ago. He has obvious developmental delays and several medical complications but he has come so far in a year. Every developmental milestone that he accomplishes amazes us. He is rolling and making great eye contact. We don’t get smiles from him very often but when we do, it’s as if the heavens open up and a gift is sent down straight from God.
Our oldest son has taught us so much about unconditional love. At four years old he doesn’t see his brother different from any other baby. He wants to be a big helper and a bossy sibling just like the average kid. I can already see how having a brother with disabilities is fostering a deeper sense of compassion and justice deep within his spirit. Because it’s not all about him.
Nathan has opened up doors for us to write and speak and share the love of Christ in the midst of suffering. It hasn’t been until this year that we have truly taken the time to understand disability. Twenty percent of the people in our population are considered disabled. That’s a pretty big percentage yet they aren’t given much of a voice. Living with a child affected by disability has enabled us to see and hear those who are disabled in a whole new way. We are beginning to understand they great value they bring to our world. People like Nathan teach us to slow down, to listen for new ways to communicate, and to accept their differences without judgement.
We still live every day with fears over his health and how he will develop. There are so many unanswered questions about what he will and won’t be able to do. Already he is showing us how much he does just by being himself. That is, he shows us that there is great beauty, joy, and hope in the midst of pain and brokenness. And ultimately, that yes, God is still good.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!