Special Needs
A friend of mine was helping me design this blog one night and when she saw this page, commented, "I never thought special needs would be a part of your life, Sar." You and me both. No parent signs up for this journey; no parent wishes the particular struggles of Down syndrome or any disability into the life of her child. But here we are, nonetheless. My feelings about Kaleb's diagnosis have spanned the full range of human emotions--from denial, grief, anger, self-pity, sadness, and finally reluctant acceptance. Only two things have remained the same throughout this brief journey, so far. God and Kaleb.
For awhile, and mostly while we were still in the hospital, Kaleb's diagnosis stole my joy for his birth. One minute life was apple pie and sunshine--my little boy was in the world and we had both made it through labor and delivery unscathed. Three hours later, a doctor I had never met before was spinning words out of his mouth I could neither entirely follow nor accept. "We've sent some blood tests to UMass for blah, blah, blah, blah. We're waiting for the results to confirm what may be a case of Down syndrome." Then my head clicked on again, "Confirm what may be?" I interrupted, "What does that mean? My tone balanced on the edge of angry; how dare this doctor speak circles around the topic of my son's health? But even before my words flew to meet his, another phrase--not of my own will, but another's--had begun repeating itself chant-like in my brain. "God does not make mistakes, God does not make mistakes, God does not mistakes." I neither willed that phrase nor could I turn it off. It became the background to all that the doctor said at the threshold of a new and overwhelming life for our family.
So much has passed since then, more than can be said here. Yes, Kaleb has Down syndrome, and yes, there are moments when the truth of that swallows my courage. But the bigger, better truths remain. Kaleb, my sweet boy, is not defined by his diagnosis. He may develop at a different pace than our girls. He may struggle in ways they won't have to, but he will have his own unique set of gifts that we will have the honor of nurturing and observing. I do not like it when people tell me what kids with Down syndrome are like. True or not, the generalizations narrow the infinite range of characteristics, talents, and interests Kaleb might develop as he grows. I would prefer to define him not by a set of stereotypes, but by the individual God has created him to be. And I like the idea that who he is is and will become is still a mystery, still unfolding. His story is just beginning.
So, if a definition is what you crave, then let his name define him. A dear friend and fellow writer wrote us a letter shortly after Kaleb's birth:
"I do recognize that Caleb is a hopeful name, evoking the story of a brave and faithful man--and not only so but also a man of stout constitution: do you remember the story of the old Caleb? When they got to the promised land and were gearing up for conquest (I think), he said something like, 'You guys probably think I'm too old for this sort of thing, but don't get any ideas. I'm still at the top of my game, and I'll drive the Canaanites out of here as quick as any of you.' Given the embrace your Kaleb will always find in you and in his God, we have no doubt that he will be well braced for whatever he must face."
Kaleb means courage, faithful. Matthew means gift of God. My prayer for my baby's life is that he will live the truths hidden in his name, that they will hide also in his heart, that they will guide his steps (whenever those steps come) as he grows into the man he was created to be. Does my son have Down syndrome? Yes, he does. But may he first and foremost have the heart of God.
That said, you may occasionally find me discussing Kaleb's special needs here on this blog, in person, on the phone. And I may share information and materials that have helped us along the way to deal with the role Down syndrome now plays in our lives as a family and in Kaleb's development. But these are secondary things. They do not define us, nor do they define him. They are a part of our story, they shape us, challenge us, give us reasons to celebrate. But who we are as a family, who Kaleb is, are truths better revealed in shape of our hearts than the shape of his eyes.
For awhile, and mostly while we were still in the hospital, Kaleb's diagnosis stole my joy for his birth. One minute life was apple pie and sunshine--my little boy was in the world and we had both made it through labor and delivery unscathed. Three hours later, a doctor I had never met before was spinning words out of his mouth I could neither entirely follow nor accept. "We've sent some blood tests to UMass for blah, blah, blah, blah. We're waiting for the results to confirm what may be a case of Down syndrome." Then my head clicked on again, "Confirm what may be?" I interrupted, "What does that mean? My tone balanced on the edge of angry; how dare this doctor speak circles around the topic of my son's health? But even before my words flew to meet his, another phrase--not of my own will, but another's--had begun repeating itself chant-like in my brain. "God does not make mistakes, God does not make mistakes, God does not mistakes." I neither willed that phrase nor could I turn it off. It became the background to all that the doctor said at the threshold of a new and overwhelming life for our family.
So much has passed since then, more than can be said here. Yes, Kaleb has Down syndrome, and yes, there are moments when the truth of that swallows my courage. But the bigger, better truths remain. Kaleb, my sweet boy, is not defined by his diagnosis. He may develop at a different pace than our girls. He may struggle in ways they won't have to, but he will have his own unique set of gifts that we will have the honor of nurturing and observing. I do not like it when people tell me what kids with Down syndrome are like. True or not, the generalizations narrow the infinite range of characteristics, talents, and interests Kaleb might develop as he grows. I would prefer to define him not by a set of stereotypes, but by the individual God has created him to be. And I like the idea that who he is is and will become is still a mystery, still unfolding. His story is just beginning.
So, if a definition is what you crave, then let his name define him. A dear friend and fellow writer wrote us a letter shortly after Kaleb's birth:
"I do recognize that Caleb is a hopeful name, evoking the story of a brave and faithful man--and not only so but also a man of stout constitution: do you remember the story of the old Caleb? When they got to the promised land and were gearing up for conquest (I think), he said something like, 'You guys probably think I'm too old for this sort of thing, but don't get any ideas. I'm still at the top of my game, and I'll drive the Canaanites out of here as quick as any of you.' Given the embrace your Kaleb will always find in you and in his God, we have no doubt that he will be well braced for whatever he must face."
Kaleb means courage, faithful. Matthew means gift of God. My prayer for my baby's life is that he will live the truths hidden in his name, that they will hide also in his heart, that they will guide his steps (whenever those steps come) as he grows into the man he was created to be. Does my son have Down syndrome? Yes, he does. But may he first and foremost have the heart of God.
That said, you may occasionally find me discussing Kaleb's special needs here on this blog, in person, on the phone. And I may share information and materials that have helped us along the way to deal with the role Down syndrome now plays in our lives as a family and in Kaleb's development. But these are secondary things. They do not define us, nor do they define him. They are a part of our story, they shape us, challenge us, give us reasons to celebrate. But who we are as a family, who Kaleb is, are truths better revealed in shape of our hearts than the shape of his eyes.