He may not walk in his shoes, but he pushes his chair.
I have been in bed for days with the flu and pneumonia. For the last few mornings my oldest son, Emerson, has had to push Wesley down to the street and help him get on the bus. This picture both warms and breaks my heart all at once.
We all want excellent lives for our children. If we are honest, we want them all to be highly intelligent and supremely talented. We want them to achieve great things. We don’t want them to have burdens. We don’t want them to endure too many challenges. We want to help them to become productive members of society while not allowing them to be too uncomfortable in the process. At least that is true for me.
His brother isn’t a burden but the hardships that come are. Emerson was two and a half when his baby brother was born. His birth marked the beginning of constant doctor’s visits, therapy appointments, and hospital stays. Three times before Wesley was eight the doctors told me there was nothing more they could do. Emerson was witness to his mother’s tears but also her fervent prayer.
There were numerous times plans with Emerson had to be changed or canceled because of Wesley. Many times I had to ask him to fetch the first aid kit for me because Wesley had fallen and was bleeding. There was even a high-speed race to the emergency room when Wesley fell down the stairs and suffered a closed head injury.
They say a mother with a child with special needs has the same stress level as a combat soldier. Though I am not sure that is my truth, we have this in common: we are always at the ready. There is never time for true relaxation. Even when Wesley is at school I am mindful that the phone can ring and something is terribly wrong. There is always the very real possibility that a cold will land us in the Pediatric Intensive Care Unit. We have to remain vigilant and any lapse can result in deadly consequences.
Emerson does not bear the burden of hyper-vigilance but he lives in a home that remains at that state. He has had to remember to be sure the gate to the stairs is always closed and that no scissors are ever left out. He could never leave his toys in the living room for fear Wesley could eat a small part and choke. As a grown man he wheels Wesley to the bus or through the mall. He has had to hold him still as I re-inserted Wesley’s feeding tube because he simply felt like pulling out of his stomach. Yet Emerson never grumbles or complains. He takes it all with the dignity that defines him.
Siblings of children with special needs will often discuss a feeling of needing to be perfect. They do not want to add to their parents stress and go in the entirely opposite direction. If his brother has special needs, he subconsciously becomes the child with no needs.
There is another side that can define a sibling of a child with special needs. Emerson has already learned the definition of unconditional love. He has a sibling who is loved merely because he exists. His brother will never get straight A’s or be the star athlete. He will never be accepted into college or get married to the perfect woman. Wesley can be violent and hit as we are trying to assist him but we love him anyway. We never give up. We may get frustrated but we never say, “this is too difficult, I am out of here.”
In a way, we understand how God loves us. I often do not do what He wants. Sometimes it is because I simply do not feel like it. Other times it is because I don’t think it is important enough to attempt or it is too inconvenient. Still other times I simply am ignoring him. I do not have the reason of cognitive impairment or poor impulse control for my behavior. Yet I still fight back even when He is trying to help me. I do wonder if to God it feels like being slapped. Yet He never walks away. Not even for a second.
Emerson has achieved much before even graduating high school. He has been on high honor roll every semester through high school. He is president of his house and the judicial counsel. He was the youngest Chaplain in the school’s history of House (which is going on six years but still an accomplishment). He was accepted into Governor School last summer. He has had the leading male roles for the last two years in his high school productions. He has performed in community theater. His college application was quite impressive and he was admitted to New York University and will begin his adventure in the fall.
More important than all those accomplishments, though, is the fact that he is honest. He is kind. He has integrity. He is respectful. He will root for the underdog. Every. Single Time. He has a servant’s heart and is quick to volunteer. His level of compassion and empathy are unmatched for a young man his age. He thinks deeply and loves generously.
As I grow older it becomes obvious to me that greatness is forged. It is the relentless pursuit of resiliency. It is the ever painful process of picking through the rubble and finding all that is precious and valuable. It is being meticulous to not allow bitterness to accompany the beautiful treasures you find. It is seeing the wreckage and, sometimes with a sigh, thinking “I can salvage this. I can. I will”.
My beautiful son did. He is my hero and being his mother is my highest honor.