Today I spent the entire day doing the exact same thing I will be doing tomorrow and that is sitting in a office in a Philadelphia suburb filled with all types of people from all over the United States, and all over the world for that matter. What would bring people together from the corners of the earth into such a small place for 48 hours? Our desire, our passion, and our drive to provide every opportunity possible for our child to live not only a normal life, but a life with purpose and success is what brings us together. For inside the walls of this office are multiple specialists with all kinds of resources and ideas, that if we implement faithfully and without waiver these ideas, our child, our special child, may just have a chance to live independently and happy. And possibly we will be able to live weightless and happy too....as much as a "typical" parent can.
I have been in this place many times before, but today seemed different. Maybe it was because it was Halloween, and instead of my child being at school with his peers getting all pumped up about the evening activities, he instead was being poked, prodded and asked a billion questions in order to assess if he had possibly made any improvements over the past six months. I mean his progression is the ultimate validation of this program. I went there years ago saying I had tried EVERYTHING else. This was my last stop on the hope train, and they better pull out a miracle on this one or I would just...well who knows. Thankfully, it does look as though my boy has pulled off a few months of developmental progress and continues to slowly make forward movement through this program. It takes almost every ounce of energy I have to influence, persuade, encourage and cheer him on in the daily therapeutic processes they have laid out before me. Today was supposed to give me that "atta girl" for keeping on. It did not. Instead I found myself angry.
Years ago I came terms about not having the most academic achiever on the block nor the athlete of the year living under my roof. There are plenty of those around my neighborhood. I also came to terms that my son learns in different ways and every year I would dress myself in the persona of the the fighter mom, the advocate who spoke up, got in anyone and everyone's face who would not listen or at least give my child a chance at what I would define as normalcy. I try to balance the emotions of the protective lioness and nurturing mom while never allowing myself to truly feel what I was feeling. If I allowed that dam to break, the amount damage the flooding would create would likely be irreversible. So instead I suck it up and ride on my chariot of advocacy and leave my mark, hopefully in some positive way. But the other day the concrete on my dam cracked and it started to leak and it leaked anger. What caused the fracture in my structure? It wasn't anything earth shattering. I have had earth shattering and this one wasn't it. It was four words that someone just wrote to me, that although I desperately tried to pass off, it got the best of me and caused a hairline fracture. Unfortunately it did not stop; as a matter of fact the fracture continues to creep up my gut and into my being. What were these four words? I was told; "You should be grateful". The force of emotions that swept through my body as I read those words was worse than the impact I had just experienced as I plowed down a deer last week. It was as if my 100 mile per hour life just crashed into a concrete wall. "Are you kidding me?" I thought. I SHOULD what?
I found out fairly soon thereafter this person does not have children, and had lost a child 13 years ago. A fate no parent would ever want to suffer. I watched one of my dearest friends bury her child in a little casket no longer than two feet. I watched the usher carry the little coffin that held her son single evenhandedly down the aisle to the hearse that brought him to his final resting place. Something no one wants to witness as it obviously has left a permanent picture in my mind. I also know the pain of infertility as I thought for five years I would never have a child. I also know others who did not have the ending I had and to this day still long for a child of their own. I also know many parents who live the daily death of dreams for their children as they were born with some type of special need, like my child. I know the daily reminders that there is something "different" with my child and for me that means friendless days, asking neighbors to allow my child to walk with their children trick or treating, because no one would ask mine to join them. It means birthday parties with family members because there are no friends to invite. It means no school dances or social functions independent of a parent being there because my son cannot maneuver through social appropriateness or conversation. It means hours spent working side by side on homework for if I did not, there would be nothing learned or understood. It means hours of sitting in offices of medical professionals, specialists and therapists holding my breath for some indication of a miracle to be found for my boy. And I am reminded daily of what "typical" adolescent life looks like compared to what my son and I face. And someone, who knows nothing of my life, who gets little positive glimmers of it through social media, speaks up and says, "You SHOULD be grateful", and the damn breaks. I should be able to sleep through the night not concerned about what the next day holds for my children. I should be able to drop my child off at school with peace of mind and not have to worry as to whether the bully will engage in his torment against my son. I should have some hope that in the next six years my son will graduate from high school, possibly be able to continue his education and find a profession where he can live independently and have a happy life. These are all the things I SHOULD have...right? No, not necessarily.
These are some of the "rights" I would like to think I am entitled to have. But in reality that's not true. So what is it that I know to be true? There are many cliches out there that roll of the tongue of many that are to provide encouragement and a source of comfort and strength for those of us who find ourselves in places we would much rather not be. I don't know about you, but they barely work for me. Why is that? I think it is because they are laced with shame. To me, the "should" statement always comes with an indirect yet sly companion called shame. It says shame on me for not being happy with at least having children. Shame on me for not being grateful for the cross I have been given to carry, because although it may be ragged and heavy, it at least holds a piece of something that someone else doesn't have, yet wanted.
I remember finding out I was pregnant with my second child just nine months after my son was born. This was not a planned pregnancy in any way, and if anyone is looking for statistics on the effectiveness of birth control, come talk to me. I happened to make some comment about being in a daze as I had learned I was with child, since I had just had back surgery and my doctor warned me not to get pregnant for at least a year. My spinal cord needed at least that much time to heal from the damage the first pregnancy had caused. This woman only heard my outpouring of concern that I was pregnant without knowing the "back" story. She made some flip comment, since she being a parent of one child, and having been unsuccessful in trying for a second, was outraged at my state of mind. Just a year later, she did become pregnant with child number two and gave birth to a very healthy boy. Do you know how many times I have wanted to walk up to her and ask her if she would still like to change places with me? NOT that I would EVER give up my children...but I just like proving a point.
That point is....we all need to STOP looking at others, comparing their lots in life and making judgments on how they SHOULD be feeling based on how we are comparing our lives and unfulfilled dreams to theirs and responding based on our internal evaluation. Every time we tell someone how they "should" be feeling or behaving we might as well start the sentence by saying, "Shame on you!" and then proceed with the rest of our judgment. We do this to ourselves too! "Shame on me for feeling this way!" "I should be so grateful I even have a son. Who cares that my heart has to adjust to broken dreams and desires for him. I should be happy I have a son." Some people may be thinking, "Why yes, that is exactly how you should feel." However, shaming someone into feeling a certain way, compared to supporting a person through their evolution of emotional maturation is something totally different. Helping someone change the way they view their lives and providing encouragement and strategies to bring them along a path of healthy thinking is much different than force feeding "right" emotions. I think most adults truly know what emotional maturity and health can look like. I truly believe we all want to be there. We all desire to be content in all circumstances and see the good in all things. Why wouldn't we? I just think us as fellow journeyers can provide assistance in building up in each other solid structures that withstand the tremors of our lives compared to weighing the framing of our being down with guilt and shame. Tomorrow I will look at others through the lens "builder" and hopefully find opportunities to share encouraging developing words as opposed to being a judgmental dumper.
