Who knows, maybe at this point in time I know the unknown, so why the hell am I so afraid. I received a phone call on Thursday letting me know that my second son's appointment to a specialty clinic at the hospital had been moved from April to this coming Thursday. This is a 2 hour appointment in which a developmental pediatrician determines what my son's developmental needs are. This is an appointment where a diagnosis other than Myoclonic Astatic Epilepsy (Doose Syndrome) may be attached to his name. I think I know what is going to be said, I think I know what the outcome will be. I am very aware that this will not change who he is. I am very aware that this will not change how we perceive him however am also aware that it may change others perceptions in both negative and positive ways. The truth is, I have no idea what the outcome will be and I am petrified. I am petrified they are going to prove me right, this is one time I do not want to be right. I am petrified they will stick some label on his head that will hold him down instead of lifting him up. I love him for everything he is and everything he will do, he is capable of so much, however many in society do not see abilities when it comes to a "disability". I know a label will open up doors in terms of funding and supports but I know it will make others think they need to close doors. I hate not knowing what his future is, I hate not knowing that it will get easier.... I hate knowing it is going to be a long road that I cannot steer, I can only mold. As a parent, I have hopes and dreams for all my children. All of them will have struggles that I cannot fix, I can only support them as they figure things out on their own. I know this will make them strong men. I just hate knowing that there is a steeper path for my second son with just as many obstacles that are often more difficult for him to navigate. I want to jump in front of all of them and open doors for him but this will not make him a strong man. I have to let him wander up this steep path and I have to walk beside him, maybe eventually follow him... I really want to lead him so I know he is safe. I cannot follow my motherly instinct because it would just give others permission to enable him and hold him down. I know I have to let him learn life's lessons just as the other boys do because he is not different, he just has a steeper path at this moment in time. He is capable of overcoming anything and doing what he wants in life, I admire his strength and courage and he is only 5. Just think of the things he will be able to accomplish with that strength and courage when he is a grown man. He will move mountains !!
I guess at the end of the day, life is all about the unknown and I just have to be vulnerable and accept the fact that I cannot control everything. Those who know me, know that I have huge vulnerability issues. This is just 1 unknown amongst hundreds that make life what it is. I will trek forward and accept the unknowns as they become known. It is just now as I finish writing, that I realize my intense need to protect him may hold him back... not something I ever want. I may let go, but only a little bit... he is only 5 after all....
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