Thursday, July 2, 2015

Anecdotal Coping? UGH!!

I feel that I have learned so much as a mother along the way in our "special" journey. There remains so much that I have yet to understand. There is so much that I struggle with. I have read many special needs parent accounts that many parents feel as though their child's disability is a blessing in disguise and that they would not have things any other way. I must state that I am not here to judge anyone's feelings, thoughts, or manner in which they process and accept challenges that they are faced with. I am very much a believer in "to each his own" and you truly do not know until you've walked a step in others' shoes. I feel as though I must precede what I am about to share with saying this is not meant to judge others, belittle or look down at other parents. What I am about to say is only relevant to my life as I stand in my shoes. I clearly interpret some of these cliches differently than some special needs parents. Or perhaps it is just that non-conforming voice in my brain for accepting anecdotal sayings for ways of accepting or coping. To say, "Our days are over-whelming but at the end of the day I would not have it any other way", (for me) would be just simply absurd. I would have things a hundred different ways. If there was any thing that I could do, any thing that I could say, any thing that I could give, in order to take any bit of struggle away from Jenna, I would. This is a cliche that leaves me confused and disgusted. IT is not a matter of "all or nothing". It is not a matter of choosing to or not to be a parent just because there is a disability to navigate. Again, the disability does not define our lives. It tries. Dam, does it try..... It is not a matter of choosing to be a mother of a child who has a disability or being without that child. It is a matter of, if faced with the power to change things in order to improve your child's well-being, would you do everything humanly possible? Absolutely. I would "have it" so that Jenna does not experience sensory storms. I would "have it" so that she does not have to struggle with frustration of understanding so much language yet not able to express nearly as much in return. I would "have it" so that her spatial awareness and body awareness came first nature. I would "have it" so that she could sustain friendships with peers. I would "have it" so that others would not run off at her absence of speech. I would "have it" so that her nervous system worked more efficiently, allowing her to live her childhood without anxiety or uncertainty. Like I said, I would "have it" a hundred or more ways that I could speak on and on about. All children should live without fear, without worry and without physiological challenge. For me, there is nothing about Jenna's disability that I deem a blessing. Not for her. Not for Jason or Blake. Not for me. I feel much anger and resentment towards her disability for its role in robbing my sweet-hearted, curious, fun-loving, and intelligent daughter. It has robbed her of so many things. It has robbed her of a deeper and closer relationship with her twin brother. It has robbed Blake. It has robbed Jason. It has robbed me. It continues to do so in a contingent manner. For me, her disability causes Jenna and our family much stress, anxiety, and feeling of helplessness. Although we have many tools to combat these things and that our will is stronger than that of the disability, it is tough. It is unfair. It is most certainly not a blessing. Our hope and determination are the blessings. I do not use the word hate very often but in the case of describing how I feel towards the struggle caused, I HATE Jenna's disability. She should not have to struggle to gain body awareness and confidence to navigate the world. She should not have to fight for others to understand her. The world should not be a frightening place. She should not have to experience the frustration of knowing what she wants to do but having her own nervous system often times serve as a road block. I hate the fact that Jenna experienced a grade three bilateral intraventricular hemorrhage. I hate the pain and damage that her early birth caused her. No, I cannot say that her disability is a blessing because she is much of who she is due to it. Not at all. Jenna is Jenna because she is who she is. Jenna is Jenna...born blessed with a sweet nature. Born with a spunk that knows no end. Jenna was born with the same traits she would have been born with had she been born sixteen weeks later at full-term. Jenna is who she is with or without her disability. You see, even though her disability plays a huge role in her journey and has a very bold existence in her days and nights, it is not part of who she is. To say that it is would be a fabrication of her identity. It does not define who she is. Nor does it govern which paths she will take in life. It is her nature that will do the governing. It is of her free will, her strengths and weaknesses, her desires that make up who she is. She decides how to navigate her struggles even when the pathways are seemingly blocked. It is not her disability that navigates those paths. She is in charge......ultimately, she is in charge. This disability does not, nor will it be, recognized as a blessing. SHE and all that makes her her, is the blessing. For that, I will be eternally grateful.

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