I sat there reeling as the doctor proclaimed, “Well, there’s no easy way to say it. Charlie has hemophilia.” It felt like a bad dream I was going to wake from. My skin felt numb. The lighting in the room seemed bright and psychedelic. Surely this couldn’t be happening. Yet, there I sat holding this sweet, innocent, fragile baby, my worst dream having become a reality.
As life went forward and we shared the news with people over time, they provided no shortage of comments and advice. It was sadly evident that most of them had never read God’s words commanding us to, “Rejoice with those who rejoice; mourn with those who mourn.” (Romans 12:15, NIV) It seemed the vast majority of what came from people’s mouths was meant more to relieve them than to comfort or guide us.
Despite the stinging words of some, there were a few nuggets of truth that God implanted in my heart during those early days of diagnosis:
- “You will redefine ‘normal’ in your life.” – This wisdom came from my older sister who already parented 3 boys, 2 of whom have hemophilia. At a time where nothing felt normal, her comment seemed implausible. Now I treasure its truth. In the beginning, life seems so very out-of-control and desperately chaotic. There is a fierce craving for normalcy. Yet, it seems initially as if that may never be possible. While it is true that life is never the same as it was pre-diagnosis, an average day seems to reshape in the family as time passes. Over the years in my own family, we have adapted our daily schedule, our travel habits with hemophilia, my son’s school protocol, and other routine living. It comes as a tremendous relief, but we only seem to identify it in retrospect.
- “Nobody is going to show up at your door with a meal. You need to give yourself a break with cooking.” – A girlfriend from church laid this bit of painful honesty at my feet one day. She was right. But she didn’t just sting me with this reality, she also introduced me to the beauty of ordering from the Schwan’s vendor in our neighborhood. Few things are looked upon with such dread as pondering what to make the family for dinner after you have spent a long day at a doctor’s office, made an unexpected emergency room run or endured the mental and emotional strain of an IEP meeting. And no one is knocking your door down on those days to offer help. This bit of truth from my friend left me permanently aware of how important that evening meal is for a stressed family. Since that time, I have found more economical alternatives to the Schwan’s vendor. I always have some form of quick dinner in the freezer. And I don’t beat up on myself for feeding the family too much pizza or pasta.
- “Take some time away one evening a week that is just for you.” – This advice also came from the church girlfriend. And she was right about this as well. For much of the twelve years since our son’s birth, I have been known to spend an evening in a local coffee house with a favorite book. Pulling away to enjoy quiet time that is without demands should be an essential part of every special needs parent’s self-care. Put another way, a wiser, older pastor in my church says, “Come apart before you come apart!” Following this advice from my girlfriend saved my sanity when the children were so small and my days were perpetually filled with diapers, potty training, doctor’s appointments and the never-ending demands of a young family.
Aside from sharing these nuggets of wisdom for you to use personally, I tell this tale to encourage you to become a more discerning listener. God tells us in Proverbs 25:12, “A wise man speaking strong words to a listening ear is like a piece of gold for the ear and a beautiful object of fine gold.” (NLV) This tells us that when we are eager to gain insights from what we hear, words from others can end up being extremely valuable in to us. While the anguish of parenting a child with special needs can easily cause us to tune out the well-meaning advice of others, there just may be a useful morsel in what is said. Pray for the Holy Spirit to be your filter, tuning out the bad, but placing the valuable in your own treasured tool chest. Then you will be able to look back with fondness one day, as I have, at the ideas that strengthened you on your difficult journey.