Maybe it’s my southern roots or maybe it’s my line of work, but having an apologetic tone seems to be my norm. It is my nature to not want to hurt or offend and being raised in a community where not waving to a neighbor (I mean EVERY neighbor) in passing seems to cause offense doesn’t help my disposition. I am sorry when I bump someone in passing, or when I hurt a loved one’s feelings, or for any other reason I think I have done some injustice to another living being. In these events, I apologize. But, I have noticed that lately I am apologetic for something that I cannot control, for something I cannot change, and for something that I should not be apologizing for….my son has DMD.
As a counselor, I am use to being the one on the ‘other side’…. I sit and patiently listen to people detail the problems they are facing and I want to help make a difference in their lives and yes, I am sorry that they are facing these obstacles to happiness. I often find that people seem to be apologetic for their emotions, situations, and problems. Someone may cry over the death of a loved one and apologize for their tears. We often say that the apology is because people are uncomfortable when expressing raw emotion. But I wonder, are they apologetic because they are uncomfortable or because they are afraid that we are uncomfortable?
When my son was first diagnosed with DMD, I ached and cried, and begged God, and felt a sadness that cannot be explained unless you experience it. Like all other things in this world, you just don’t fully know until you’ve been there. I use to think about parents that had lost children and I thought that if it happened to me that I would not be able to go on living. Well, now I am a parent who may experience my worst nightmare and guess what, I’m still living. And, somehow in the days that followed Riley’s diagnosis (even though I was a mess on the inside), in public, I smiled and laughed anyway, and talked about it as if I were a doctor, researcher, or expert on the subject so that others could understand. People around me fell apart and openly cried and grieved. I continued to ‘be strong’ while setting up appointments and informing school administrators because these things needed to be done and I had to get through them.
During this time I found that instead of apologizing for tears, I was apologizing for the absence of tears. People would openly comment “Wow, you seem to be doing well, I don’t think I could be that strong if it were my son.” I didn’t actually say ‘I’m sorry’ but I felt that I was supposed to be. Is it not o.k. that I’m not crying? I don’t mean that people were unsympathetic or rude; on the contrary people in my community have been overwhelmingly supportive. Like the ‘old me’ they haven’t experienced it and don’t know how they would truly react if it did happen to them. But, on the inside I was sorry that I couldn’t or wouldn’t share my tears and I felt I owed an apology.
My next venture in apologizing was our first trip to Disney World. In order to get Riley around the parks and give him the best vacation possible, I had our doctor write a letter explaining his disability. On our first day I brought the letter to Guest Services (along with a list of questions in my head about what challenges we would face). As I am showing the letter to the ‘cast member’ and trying to ask about attractions that would require climbing stairs or walking long distances, I was interrupted as he said “OK you want a pass.” He smiled, handed me a guest assistance pass and moved on. I felt a little embarrassed and just left. We soon learned that we were not allowed to take the stroller past the front entrance on most attractions and my husband spent our first day carrying Riley up the stairs and through lines. By that evening we were finally told by one employee to get a tag for our stroller so that it could be used as a wheelchair. YEAH!! Breakthrough! Or so I thought. Despite having our little tag on the stroller we were often still asked to park it, or were not directed to elevators, and even given ‘questioning’ looks about it. At first we felt like we were intruding and often apologized for THEIR inconvenience. “I’m sorry, but we have this tag and if we don’t go onto the elevator my husband will have to carry him up the 50 flights of steps you have here.” Now, I am well aware that every person at Disney World will not know a doggone thing about DMD much less about my particular circumstance since a billion folks with a million types of disabilities visit a year. We were not angry or unkind to anyone, we eventually just went where we thought we should and navigated the best we could. And, we felt we should apologize.
Now that some time (5 months) has passed since our diagnosis, people will ask how Riley is doing. My usual response is “He’s doing fine, he doesn’t really understand yet.” Since there are two fundraisers for us in progress (both organized by people outside of my family) I suppose that people assume he should ‘look’ disabled. People that are not close to my family but are aware of him having DMD (small community) may see him and look puzzled that he is able to walk and acts like a normal 5 year old boy (with the exception of very large calf muscles). At this point when I become aware of their limited knowledge of DMD and the puzzled look, I find myself explaining and answering questions because after all they are giving their own time and money to our cause. I am glad that people want to know, learn, and better understand and I am more than happy to educate them. But, in my efforts to enlighten, I find myself feeling like I owe people an apology for their ignorance, for my son’s current happiness and health, and for our need for financial assistance.
The definition of the word sorry is ‘feeling or expressing sympathy, pity, or regret: worthless or inferior.’ With that said, I find myself apologizing to others for my situation because maybe I am afraid that they are uncomfortable. My son has DMD. He is still a normal little boy. He is happy. I am sorry when Riley is sad and for everyday in the future when he may be. I am sorry that Duchenne exists and that any child has to learn the word. I am sorry that more people do not know about it and there is limited support and no cure. I am sorry that I want the best care in the world for my son and that I may not be financially able to provide it without help. I am sorry that Riley has to see more doctors and go through more physical examinations and scrutiny than a child should. I am sorry that there are families around the world that know what I feel ,and what I am experiencing, and what I am going to face in the future. I am sorry that I cannot spend every hour of every day with my child because I have to work. I am sorry that many people around the world have had to devote their lives to helping, caring for, and loving children like mine. I am sorry that I have to carry this heart ache with me while I smile and laugh because others may not understand. For these and many other things, I am sorry.
I am not sorry that I believe there is a God and he has a plan for us all. I am not sorry that I have hope and faith that one day there will be a cure for Duchenne. Through this journey I am learning. My plan is to fight for Riley and for boys with Duchenne everywhere. I am so thankful that God wipes my tears so that I can continue to be the best mom I can. I am sorry that my son has Duchenne Muscular Dystrophy. People may not understand and this journey may be tough but for his sake, I won’t apologize.