I am writing this one in honor of a little boy I follow on Facebook. His name is Blake and he has Trisomy 13. He just turned a year old. Doctors don't want to do much for him because he is "incompatible with life." There was a little girl named Annie as well. She had Down Syndrome and because she did, a heart transplant was refused for her. She suffered till she passed nine months ago.There is a little boy named Andrew who was a victim of Shaken Baby. Doctors not long ago said he had little brain activity. He is thriving and doing well all considering. He looks nothing like a child with very little brain activity!
Doctors basically taking the label of diagnosis and playing God. It's not just doctors though either. Teachers/administration, psych people and even strangers! Does that infuriate you? Do you agree with those doctors and others? Do they have a right to tell a parent that because of a diagnosis, they have no right to life? Do they have no right to at least be able to COMFORTABLY enjoy what life they do have? Only God knows how much time each of us have. Way too many die too soon we say yet what about those who live when they were told they would not? How about giving them a REAL chance?
When will people get it that the label of a diagnosis is NOT who that person is? Would you introduce yourself as "Hi, I am diabetic, how are you doing?" NO! You would do it as, "Hi, MY NAME IS _____ and I have diabetes but that's not WHO I am." So many don't see past that. How many get stared at because they look different? How many get called "Retarded" (I HATE that word) just because they have any sort of learning disability? How many get told "you can't do this or that" because of the diagnostic label they have? WAY TOO MANY!
Blake according to statistics, should not be alive. Another young man I follow in these blogs has Trisomy 18 His name is Aaron. He's thriving. That diagnosis is supposedly a death sentence diagnosis as well. Does that mean none of these children deserve a chance? NO!!!! GOD ultimately decides. Are doctors and others God? Most of these families who face life changing diagnoses are asked hard questions. Many are uncalled for.
What are some of those questions? I for one have been asked why I chose to have another child knowing the risk of the craniofacial syndrome. I have been told before it would be cruel of me to have other children after my daughter. This was because of a syndrome that is 50/50.... Others have been told to abort their children. Or told their child will be a vegetable. I had one friend who was told her child just should be allowed to die already because she would only be a burden to society.
Those who have a "non visible" diagnosis it's even harder for them because you can't see the physical. ADHD, Autism, etc. Many of those families get told "Just give them a good spanking, that will fix it!" "You aren't parenting right! They are too spoiled." stuff.
"Only hateful people say stuff like that!" Actually not..... You would be amazed where us parents (or grandparents) hear this stuff from.... You would simply be amazed.
"How are you not full of hate then?" Grace.... And hard work.... Most of us have to make it a daily decision to work through that. Many of us can just take it as ignorance or at least people trying to help but it not be helpful. Some though are just mean. For me, it catches me most when it comes from those I would least expect it to be said from.
The best solution to me in dealing with that? Pray about it.... Pray for peace that surpasses all understanding... Remind them that your child has already defied odds and that they were wrong before and that your child(ren) will continue to defy odds till their last breath, whenever that may be. As for me, I will stand with my children and fight for them and teach them to fight for themselves. I will sit back and not take anyone telling me to give up. NEVER! I will fight for answers and solutions, always.
I'm not saying go see 20 doctors to get an answer you want BUT if you know one isn't treating you right or is refusing a necessary treatment "just because of the diagnosis" then find someone else till you find one that will give your child a chance.
I grew up being told that I would amount to nothing, be either institutionalized my whole life or in prison. I am none of those. I am thriving, surviving and I have two children and one angel to prove it. Defy the odds and go fight!!
Fight the good fight of faith!!!!!
Go get em!!
~ Special Momma ~
~ Special Momma ~
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