If people ask me how I am doing, my typical response is “I am doing well”. Prior to the birth of our daughter Jenna that response was typically accepted without question. After her birth, there is sometimes a follow-up question: “How are you, really?” The follow-up question really means, “how are you dealing with Jenna’s diagnosis?” and the answer to that question TODAY is, “I am doing well”. But it was not always the case.
If you would have asked me how I was doing in the moments immediately following the Pediatrician saying, “there are strong signs that your daughter has Down syndrome”, I would not have said I was doing well. I probably would not have said anything at all. For several minutes after hearing the diagnosis, I just sat in stunned silence. I am not sure I heard a lot of the discussion between the Dr. and my wife that followed his initial statement. The words “Down syndrome” just kept reverberating in my head. At some point, I was able to close my gaping mouth and re-focus on what was happening in the room.
If you would have asked me how I was doing several hours after learning of the diagnosis, I would not have said I was doing well. You likely would not have been able to understand the words coming out of my mouth. I called my parent to tell them the diagnosis and my emotional state was far different than it had been several hours before when I called them to let them know their grand-daughter had arrived. I could barely mutter the words and sobbed nearly uncontrollably in the car as I was driving home for a late dinner. I had to ask them to tell my brother because I didn’t think I could emotionally handle telling anyone else at that point.
If you would have asked me how I was doing later that first night as I laid in bed, I would not have said I was doing well. You’d likely have overheard me talking to God all night long. You’d have heard me, amidst a flood of tears, alternatively questioning Him and asking Him for help. After struggling so long to get pregnant a second time, why would you let this happen? Please help me be the dad that this child needs? What did we do to deserve this? Please help us to find the best possible medical care for her so she can grow up strong.
If you would have asked how I was doing the morning after Jenna’s birth as I was driving back to the hospital, I would not have said I was doing well. You would have, again, had difficulty understanding me as I cried the entire way to the hospital as I began thinking about her future and how different it might be than I’d expected. I realized that Jenna might not do things like attend college, get married, etc.
If you would have asked me how I was doing several days after Jenna was born, I would not have said I was doing well. But I would have said, “better”. In the days after the diagnosis, I began to come to terms with the unknown future we had in front of us and started the process of educating myself on the condition. I began to get past automatically seeing the signs of Down syndrome when I looked at Jenna and instead started seeing my beautiful baby girl.
If you would have asked me how I was doing a couple of weeks after Jenna was born, I would not have said I was doing well. But I would have said, “ok”. The weeks following Jenna’s birth were stressful in that we had several very important appointments with specialists. With the passing of each appointment, the fear of the future became less as we found out some very important things; Jenna was not born with a major cardiac problem that can be found in Down syndrome babies and her kidney function appeared normal.
If you ask me now, several months after her birth, how I am doing, I will tell you I am doing well. It may not always be the case, there may be periods of time where I cannot honestly say that I am doing well. I know that we may face some challenges and scary times in the future, but I know that friends and family will be there to support and pray for us. And I know that God will give us the strength we need to face whatever may come.
When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.