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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Sunday, November 1, 2009

The Parent's Struggle - My thoughts

Here is a copy of the email that I shared with the group. It expresses my feelings, thoughts and opinions as to what the Author was trying to convey in the article.

 Hi All-

I wanted to take a few minutes and give my opinions on this article.

Speaking from the perspective of a person with a visual impairment  (20/200)
 since birth, a mom of 5 "normal" children, a mom of a complex special  needs child (Timmy) and a mom to a son, who we lost to death at the tender age of 1 month.

I disagree with the Author when he says that "Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future." Other than "wanting" a healthy baby, I never had dreams, fantasies, illusions, or projections into "my" child's future. As a parent, I feel that my child, not I, should determine who and what they become in life. Through my nurturing and guidance from infancy, they can be anything
they set out to be. As a parent, I feel that by me projecting "my" dreams, fantasies, and illusions on what "I" want or feel that my child "should" become, only causes them to be put under undo stress, anxiety, depression and anger. The child is not being given a chance to become what they want to be, but rather what the parent wants them to become.

After only reading the first few paragraphs, I asked myself, How could the Author liken the grieving stages (states) of a child lost to death with the loss of a "normal" child? How or Why would a parent grieve for the loss of a "normal" child, if their child "only" had 1 disability ie (blindness, hearing impaired, the loss of limbs etc)? These child with only 1 disability can still become whatever they want in life. It may take them longer or it may have to be gained in a different way. My first assumption was that the Author "had" to be implying that the grieving parents were those of children who had multiple special needs.

After having read and re-read the article, looking back at my parents, and seeing that "I" had and still am grieving for Timmy, I can see where the Author is coming from.

I'm not sure at what age, my dad inparticular, had the "dream, fantasy, or illusion", that I would someday be a computer engineer. He worked long hours at a job in which, I later learned that he really didn't like, so that he could use his job benefit of a "fully paid for college education," through his work, to get me through many years of college. Well, due to my lack of common sense, I chose a different path for myself. I chose to become a mom
at a "very" young age. So I saw my dad go through the grieving process. Whether he or my mom went through the grieving process upon my birth and learning that I was legally blind, I honestly can't say or remember. I'm sure it is possible, being at the age of 4, I had to leave home to go away to attend our states blind school.

 It wasn't until I had finished reading this article, that I realized that "I" had and am still grieving for Timmy. We found out about Timmy's complex medical issues when I was about 17 weeks pregnant. This is when "DENIAL" first set in. I had 4 healthy children. I went to eveery OB visit. I ate well, took my prenatal vitamins, exercised daily and got plenty of rest. The ultrasound HAD to be wrong. This can't behappening to me, things like this only happen to other families.

 Upon Timmy's birth, when ALL of his disabilities we confirmed, I felt I had to know everything there was to know about each of Timmy's conditions. What medical treatments and therapies there were available. Where to find resources to help Timmy and us, as his parents, to better care for him. The ANXIETY still exsist, because I always feel that there "must" be something more that "i," his Doctors, his therapist and his teacher "could" be doing to help his development.

FEAR; I fear the unknown. Timmy has looong out lived any expectations of any of his Doctors. Will we have him for just another few days, weeks, months, or years? Will my taking him out in public, so that he can have the same experiences that my "normal" children had or have going to lessen his time here with us, due to him getting sick? Keeping Timmy in a protective bubble, so to speak, isn't an option, because I/We want Timmy to be able to experience life to its fullest, even with his disabilities.

GUILT; Even though genetic testing has been preformed and it has been determined that Timmy's medical issues are a result of "bad" genes, I still can't help but to blame myself. I find myself asking the question "I had 4 healthy children before Timmy, why weren't they affected?" Even though Timmy has a bad gene, "maybe" I picked up something from our pet cat that we had and this along with the bad gene caused his medical issues? Maybe I ate too much fish with mercury while trying to conceive or while pregnat and this along
with the bad gene caused his medical issues?

DEPRESSION; I find myself more often than not longing for a child who can chew a mouthful of food, so that he can enjoy the same foods as us, when we all go out to a resturant to eat, rather than having to eat everything pureed. I long for a child who can run and play with his younger sister, his older brother and his peer in the park. I long for a child who can ride a bike or be invited to sleep overs. I long for a child who can "SEE", not
 just hear, smell and feel the beauty of the world around him. I long for a world in which my child will be accepted, by family, friends and strangers. A world in which, when I take my child out not 1 person will stop to stare, point, or laugh. I long for a "normal" child. BUT I whole heartedly LOVE the child I have and wouldn't trade him for that "normal" child that
I sooo long for!

ANGER; i would like to be able to admit that this "stage" of grieving is behind me, being that I/We know that Timmy's medical issues are a result of a bad gene, but it isn't. I no longer blame Floyd (Timmy's dad), my parents or Floyd's parents. My current ANGER is towards GOD. I won't go into this, but maybe someone here can relate.

In my experience, grieving the loss of a "normal" child is much easier than that of the loss of a child to death. I have found that family, friends, and sometimes even strangers are more accepting to the grieving process of the loss of a "normal" chidl than some of these same people (family, friends)are to the grieving process of that to death. Why is this? I can only speculate. Maybe it is because with death it is harder for family, friends and strangers to find comforting words to ease the pain that a paent is feeling? And these same people don't know how to "cope" with the feelings that the grieving parent is experiencing? When there is only the loss of a "normal" child, family, friends and
strangers have the opportunity to step forward, to offer support, physically, mentally, emotionally and socially. And by doing so, they are able to help care for the disabled child.

After having read this article, I have discovered that it is through my membership to "this" support group, as well as several others, that I have become better educated, a better advocate and a better parent to Timmy, because of the support and information share by these support groups.

Now to summerize; "I" think that the Aurthor was saying that people deal with the loss of a "normal" child in "many" different way. One being that some Parent(s) don't go through a grieving porcess. That some parents when faced with adversity are able to mentally, emotionally, physically and socailly change their lives without even looking back. This is the group that I thought that I was in, until I had read this article. I have accepted Timmy's disability. I have accepted Timmy for "who he is" and not for what he will never be. I have changed my life so as to be able to care and provide for Timmy's needs. I have found the strength to educate myself and others. To stand strong and to be my son's voice.

Then there is a 2nd group, in which, Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. "I" think that here the Author was trying to convey, that these are the parents who have set high hopes for their child. These parents have dreamed of that All Star Little League Player, The Homecoming Queen, The Lawyer, The Teacher, and The someday of being a Grandparent. Depending on the child's
disability, their dreams, fantasies, illusions, and projections into the future for their child have ALL been shattered. In "my" opinion, these are the parents who choose what their child will become and not let the child decide on their own who or what they will be.

And finally the 3rd group. The group in which I now have found myself. The group of parents, who grieve for the simple things that their child can not or will not ever do, like talk, walk, run with their peers, play sports, be invited to sleep overs, go to the prom, have a job, get married, have their own children. The simple things that most people take foregranted and overlook, because it tends to be the norm for all children, except for those who have severe multiple disabilities. And for those who only have a single
disability (blindness, hearing impairment) There are things that the parents of these children grieve for as well. The missed opportunity to share the beauty of the world through sight. The missed opportunity to have your child hear your voice call their name or the sound of nature.

I feel that the Author was trying to say that it is more healthy "if" parents who need to grieve are allowed to do so. If their grieving is understood and accepted by their support team, family, friends and strangers. That parents have alot to gain by sharing their feelings and experiences through a support group or counselling. That each parent can
learn for others who are travelling down the same unpaved, winding road that leads to uncertainity, acceptance and love.

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