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Monday, April 16, 2012

Neurology

Tell me, as a parent, if you had to choose for your child to have a physical disability or a developmental disability, which would you choose?

Neither, I know. But, what if?

Our younger son's left arm was paralyzed at birth.

He had suffered an injury in the birthing process that I learned about less than a minute before they laid him on my chest. The nerves in his neck and arm had been severely stretched and some severed. I held him close, protecting his limp arm, and he looked right at me.

At home, his older brother, not yet two years old, had yet to look directly at me. Already diagnosed with a couple disorders questioning his neurological development, big brother was physically able.

Physically or developmentally impaired neurology. Which would you choose?

I didn't have to choose. Now a mother to two sons, I was immediately faced with how fragile neurology could be. These were the cards our family was dealt, and there would be more to come.

There I was in the hospital with my beautiful newborn, fully understanding that he was paralyzed. Yet, when I looked down at him--listless arm and all--why was I calm?

Why did the thought of a life with the developmental disabilities facing our older son scare the pants off of me? And yet, when looking at this new life with only one working arm, although I was worried, I was also still?

To this day, that has worked on me.

I don't care about our younger son any less. It's just that, well, to an extent, as his nerves healed oh-so-slowly, his muscles and bones could be mushed, coerced, and, ultimately, surgically corrected. It took energy. It took education. It took manpower, money and advocacy. But it was possible. Our whole family believed it and fought for a life free of physical disability for that child.

But, autism. Autism was then and still is chronic. And, while it, too, can be bent and shaped, unlike our younger son with his corrective surgery, we couldn't just extract our older son's autism.

Just in case you are wondering, yes, yes I really did want to extract it. I did. I wanted him to talk. I wanted him to live life without crippling anxiety. I wanted him to be able to see the world as beautiful and not offensive.

There are some traits about our older son that were born of autism and are a thing of beauty. However, in his young life, it had brought about a great deal of pain. I feared that pain. I feared for his future. And, years later, when we received a second diagnosis for our younger son, I feared for us all.

Sometimes, I still do.

Remember that list of Things I Didn't Expect I Would Be Doing As A Parent? (or something to that effect) Sure you do! You read ALL my posts, right? Let's add to the list: Obsessing about our sons' neurology. I don't know if this one is necessarily a good thing or a bad thing.

It just is.



You can read more about brachial plexus injuries HERE or more about our younger son and his journey in this early Mom Cave post HERE.


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This entry was written in response to the letter prompt "N" in Blogging A to Z April 2012.

23 comments:

  1. Your honesty in sharing these insights with us takes my breath away. The daily choices that you make, the contemplations you are faced with are mind boggling. And yet you go forward, each time for your sons. That is love and it's beautiful to see. Our son was born three weeks premature. During his 10 days in the Neonatal ICU at Children's Hospital, the toughest phrase they ever threw at us was "interuterine growth retardation". That didn't come to pass - and he actually left at 10 days with no neurological or physical deficits at all. I have alwasy felt blessed and have never taken for granted what we didn't have to deal with just by the grace of god or the stroke of luck, whichever way you believe. I think of your family everyday Amy and an in awe of your love, determination and patience.

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    1. I felt tears as I read this--it brought me back to the first time I heard the possibility of an issue with our older son. It was in the hospital as well. I felt dread in the pit of my stomach. I think at some point you become hardened to that--sometimes even thankful for the answers the diagnoses provide.

      I'm so glad that the story was written differently for you.

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  2. The brain is more mysterious than anything we can imagine, and that is where the worry comes in. It has been four years since my son was born prematurely, and I am still waiting to see if the other shoe drops.

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    1. As parents in that position, do we ever really exhale? Perhaps you can? Perhaps during the college years. lol. But, then I suppose the worry will be replaced with another.

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  3. some of my children saw a neurologist all of their lives---we had many fascinating yet supremely confusing conversations

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    1. Yes! I've learned so much from both of my sons!

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  4. The world is a tough place, even for those with high intelligence, and no physical or neurological challenges.

    Luckily, none of us parents have to make that choice. (Except for those who believe that on another plane we did choose our current lives and their challenges to learn some sort of lesson. Whatever.)

    I think people are more accommodating and understanding about disabilities they can SEE - the blind woman with the cane, the guy in the wheelchair, the teenagers talking in sign language. The man with autism, the woman with MS - why can't they just act normal? Makes perfect sense to me that we'd choose, if we could, a physical rather than neurological handicap for our children.

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    1. Fear of the unknown/intangible, perhaps? I think there is some of that for me.

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  5. It just is. My son went to the Neurologist at 4 months and again later down the line when Autism came into play, and it scared me more than a physical disability. Because yes, they can heal, or there is so much technology out there and so much research. When it is the complex brain, or Autism, we are walking almost blindly; so much more needs to be learned. That is what is frightening for me.

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    1. Gosh, yes. And, then our older son had his first seizure in the fall. Ugh. Hormones and autism. We were told, "We don't really know how all this works. Let's watch and see..." Sigh. Scary.

      Our younger son's nerves were healing at a rate of 1mm per day. I didn't know if they would even fully heal. Some didn't. There was an unknown there, also. The world of BPI is just emerging as well. But, still, it seemed more tangible and therefore more easily controlled.

      Onto "O" my friend!

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  6. Miraculous things take place every day... perhaps then next one will be for you.

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    1. Thank you! But also know that we have lived a miracle with our younger son. He was given a second chance in life with the corrective surgery that he had just before he turned five years old. With his injury on the mild side and the ability to make it to Houston for that surgery, his life has forever been changed.

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  7. As I just wrote on my blog, the body and especially the brain are so complex and intricate that it's almost a miracle that any of us get through life healthy. Your sons are blessed to have a mother and father like you and your husband, Amy, particularly with the good humor and grace you have in the face of such challenges. And keep on appreciating the good things and the very special ways of looking at the world that these boys have! I have a cousin whose son has cerebral palsy. She's had to care for him in every possible way for more than twenty-five years. But she's never considered it a burden; she loves him for the person he is. I sense that same kind of love and acceptance in you.

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    1. I suppose there have been the "down" days--particularly in the early years. We're human. Those early years are tough when the skills are still raw. But, yes, we do love and accept our kids. Thanks for seeing that.

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  8. "Just in case you are wondering, yes, yes I really did want to extract it. I did. I wanted him to talk. I wanted him to live life without crippling anxiety. I wanted him to be able to see the world as beautiful and not offensive."

    Of course you wanted to zap it and have it disappear. I can't imagine that you wouldn't have. I've occasionally heard a parent say that they wouldn't want to change something about their child--especially as it applies to an "imperfection" of some sort. I think they say it and mean it for the right reasons--to clarify that their love for their child is no less intense, no less complete than if he/she didn't have whatever brand of difficulty they'd been dealt.

    When I hear a parent profess that they wouldn't want to "mend" or heal their child, that's really what I hear them say--that their child is a blessing, a gift, and a part of their very soul, and that the diagnosis or difficulty in no way diminishes their child's value, their beauty, their deservedness of complete love and acceptance. And as a parent, I fully understand and agree with that. As a human being, I fully understand and agree with that.

    Yet as a parent and as a human being, my heart wants to ease pain, and I cannot imagine that it is not sometimes painful to be unable to ________. It doesn't matter what specifically fills in that blank, I think there is pain there. Who wouldn't want to extract something that was destined to cause pain for another--especially one they loved so dearly?

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    1. Thanks for seeing that distinction, Beth. Particularly in this month of April--Autism awareness month--there are those in the Autism community that feel too much negative is placed on something that should be celebrated. Many autistics are quite happy with where they are situated. I wanted to be sensitive to that, but, yes, I was also saying that along with this life of our older son has come some pain. As his mother, I would like to zap away that pain if I could. Wouldn't we all?

      xo

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    1. Hi, Jerry! Thanks for saying so. You are kind and generous. Also, please know that, particularly with our younger son's surgery, we had help! My parents literally carried me through that event as my husband had to stay here at home to keep our older son stable in his routine. I could not have done it without them. They made it possible.

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  10. Your posts often bring tears to my eyes. But really, what else could you do at that point but accept and do what you had to. You really don't have a choice. Your courage in the face of all you have to deal with is inspirational. You are honest and straight to the point. You don't candy coat anything, and that is what I like about you. You seem to be an extremely remarkable woman with incredible strength for God to deal you the hand He has. You persevere and survive and celebrate the little things. You are an excellent example to us all.

    Kathy
    http://gigglingtruckerswife.blogspot.com

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    1. Thank you, Kathy. You are always very kind and supportive. I would also suggest that none of us would be able to fathom this kind of life, not really. I know that I wouldn't if I were reading these posts should they have been written by you. I would not be able to put my shoes into a special needs mom's for a second. This job requires on-site training. It comes. Sometimes slowly. lol.

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  11. I was going to type that I understand what you mean, but I don't. My kids were physically healthy. My youngest developed allergies and had his first asthma attack when he was 2, and that is still one of the scariest nights of my life, because I didn't have a clue what it was. But, oh, if I could zap away my sons's autism? God yes! I know that I've learned so much, and others through my sons as well, but autism is one of the scariest things around, because we don't know what causes it, or what is going to happen in the future. We don't always know how to deal with these kids and we are human and don't always want to deal with the imperfections as well.

    I don't know if you're interested, but I've slowly started writing a Bible study for parents of autistic children. I've had the title for years - "Job had it Easy". If you're not, that's fine, but I would be interested in learning from other parents if what I'm writing helps.

    And, Oh! Good post, as always! You are an amazing mother!

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  12. keep talking, amy... i am listening....

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  13. I am becoming so informed from these posts. Not only have I fallen madly in love with your whole entire family, I have also cried with you in sadness and despair and cried with your victories and cute stuff. I have learned so much about autism and as you mentioned, April is a good months to be learning, but mostly, I have come to realize that you are accepting and aggressively searching for more. You are living in your now, but always seeking a better future for your family. What more could any mom do?
    Understanding wanting to zap away any disability is natural at first, but as we grow, those challenges actually help formulate who we become. If the pain were gone, wonderful, but accepting it is so much harder.
    Would I choose physical over mental challenges? Even for myself I would.
    I totally get it. ♥

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