One of "Those" Days.

Pain is inevitable.  Suffering is optional.  ~M. Kathleen Casey

——————

It’s been a long time since we’ve had one and unfortunately, I guess I’ve gotten sort of complacent. 

I don’t write about this much because our lives aren’t defined by our son’s autism.  I don’t want people thinking it’s all of who Jacob is and I don’t want people’s pity. (I do, on the other hand, want their understanding.)  He’s SO much more than Asperger’s Syndrome.  It’s something we deal with on a daily basis and it’s become such a routine part of how we live that sometimes, I think I forget…well not really, but…he’s come such a LOONNG way.  He’s really quite amazing.  But some days, his autism becomes too big for him.  He works so hard every day to maintain control over the things that challenge him.  I’m so immensely proud of him.  But then it also breaks my heart all at the same time that he has to work so hard at it.

Today, I’ve had a reality check.  Some days, autism does run the show.  Some days, I can’t talk him through difficult moments.  Some days are hard.  They are much fewer and much farther between, but they do come, occasionally.

Jacob hasn’t felt well for a few days and so I took him to the doc this morning.  I expected a test for “strep” since he had been complaining of a sore throat.  So I had prepared him for that.  What I didn’t expect is for the strep test to come back negative and for them to do a MONO test.  Apparently it’s been going around.  YIKES. 

Mono test  =  blood test = drawing blood = FREAK OUT

I didn’t anticipate the freak out part of the equation–I should have. I was trying to “talk him down” as it were.  But today, he wasn’t having it.  There was so reasoning.  Today, the autism won–for a little while.

Here’s a visual:  Screaming, writhing 12 yr old boy. Two nurses and me restraining screaming, writhing 12 yr old boy. “Stop siphoning blood from by body!!!” (It would have been funny if it weren’t so heartbreaking.) Nurse 1 doing the finger stick.  Admittedly, those finger sticks hurt WAY worse than the syringe-in-the-crook-of-the-arm blood draw, in my opinion.  And they hurt even worse when you’ve got a moving target.  What’s more, she didn’t get a good stick the first time and had to have a second go.  OY VEY.

End result:  crying, hyperventilating child and crying mother complete with running nose.  Gross, I know.  But I couldn’t exactly wipe it because my arms were occupied!!!  That skinny little booger is a lot stronger than you think.

I want to give the nurses come credit though, they were very kind and were just doing their job and worked hard to try and make him feel better, so it wasn’t their fault.  He just couldn’t help it.  And mom couldn’t help him “help it”.  Y’all ever have a case of the “cain’t help its”??  Mom’s magic wand was fresh out of pixie dust, apparently. 

{Thankfully, mono test was negative and his blood work was good.  “Just” a viral allergy thing.}

Every once in a while, I allow myself to cry about it.  But only every once in a long while.  It doesn’t change what is.  Why mourn something that doesn’t exist?  Why mourn when I have been given such an incredible child to love and nurture?  He is a precious gift and we celebrate him every day.  And if there were a “cure”, I wouldn’t want it–at least not for my sake.  If it could make Jacob feel better about himself.  If it would make him happy.  If he wanted it.  If it would prevent him from feeling like an outcast or an alien (as he likes to say), then yes.  By all means, bring on the cure.  A cure wouldn’t prevent him from experiencing the pain any other “normal” kid experiences, though.  Would I want him any other way?  Would I want him “normal”?  No way.  Not in a million light-years.  He is an awesome kid.  He’s adorable, hilarious, kind and loving.  He’s brilliant.  And I love him to the point where I feel like my heart will explode.  These days come and then as quickly as they’ve come, they go.  We take things as they come and pray for wisdom and strength to walk through it.  God gives us strength and we survive.  We survive and we grow and we love our amazing son.  A little TLC and hot chocolate go a long way.  

——————-

We have no right to ask when sorrow comes, “Why did this happen to me?” unless we ask the same question for every moment of happiness that comes our way.  ~Author Unknown

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11 Comments

Filed under Autism Days, Faith

11 responses to “One of "Those" Days.

  1. barnyardmama

    I threw some incredible scenes as a child and that\’s just because I\’m a straight-up drama queen.  Have you talked to your son\’s doctor about the possibility of prescribing some anti-anxiety medication for these types of situations?  It seems to me that they should be doing everything possible to make a comfortable experience for everyone.  I\’m sorry that you had to go through that.  And thanks for sharing.
     
    KM 

  2. TARA LYNN

    Hello.  What an inspiring story. Thank you for writing it.  My sisters son  has DMD and some times it is to much to deal with. I always wondered how she smiles, and is always so happy around him, but she never stops.  Life is so precious and everyone needs to read your story, there is so much inspiration it it. Thank you again for writing it. I wish you all long loving and protection from GOd. 

  3. Lena

     
    Joell, I\’m glad "those" days come infrequently for your and your son.  I get it, and I understand. Peace to you and your beautiful family.
     
    ~H.
     
     

  4. siobhan

    Hi, I stopped by here by way of Mercy/EvilKitty because I saw that you were obsessed with the Outlander series and I wanted to "meet" a fellow devotee.  I have read every single book and I am waiting for the next.  There is going to be one after a Breath of Snow and Ashes isn\’t there?  PLEASE! 
    this entry about your son was very moving.  Children certainly do come with their challenges don\’t they.  I\’m glad that everything turned out all right.  Some days it seems like it takes all that you can do to hold it together!!  Hot chocolate cures almost everything!
    Nice to "meet" you.  I love your site!
    Siobhan 

  5. Thot

    oh I forgot…the question about normalcy…The truth is he is normal…just has his difficulties rather than ours… fortunately he has somene to help him thru them…some of us dont… 

  6. Thot

    I have been visiting the doctor with my daughter for blood work as we figure our this blood clot thing…as you talked of your son here I thot how much it says about YOU…what a fine thing we do when we love our children to that degree.  Sometimes tho, I am sure you would like to get thru those stressors without having to even pull out your magic wand…let alone check to see if it is adaquately filled with pixie dust.. I hope your day turned out ok, and that today gets better and better… syphyoning blood, interesting how we "see things" …I think he\’s right…

  7. Toni

    I think that maybe the blood-drawing freak-out thing might not just be due to your son\’s autism, lol.
    In all seriousness though, I loved this entry–very honest and enlightening…and touching. I don\’t want to be one of those people that say, "I don\’t know how you do it," when what I really want to convey is "I love the way you are doing this." Great, great entry. 

  8. Nooner™

     
    Hi Joell,
     
    I am totally moved by this entry and appreciate the opportunity to learn a little about your beautiful son.
    Your words "want their understanding" were particularly striking for me as I share the same wants for my wonderful little brother, who has Down Syndrome. (He\’s the pride and joy of my family).
    Thank you for sharing your story. Glad to hear the health issue turned out to just be a viral thing.
     
    ~Nooner~
     

  9. Jim

    I do not do well with the whole drawing of the blood thing either.  If you just think about it for a sec, that stuff is suppose to stay INSIDE the body.  I am sure my doctor has a flash card in my file about drawing blood from me.  🙂
     
    Oh, and hot chocolate is a miracle cure all.
     
    Nice Space.  Welcome to the Carolinas. 

  10. Christine

    My oldest daughter has Tourettes.  With that disorder comes a very creative right-brain, along with a VERY giving and loving heart.  Some meds that suppress issues of Tourettes can also suppress some of the amazing attributes that come with these kids who are so sensitive neurologically.  You have one because of the other.  Odd … but a fact of the way it works.  I wouldn\’t ever want her to not be "her."

  11. Aimee

    many children react that way whether autistic or not…your are right that it\’s not often that you talk about it…but sometimes i am sure that it runs your life…you are such a strong individual to let it be the normal…not very many people could be as strong as yourself….i am sorry to hear that you had a rough day but you are right…he is pretty normal for freaking out…but where did he come up with sypioning blood…i must admit i giggled for a quick second at that one…
    *~*   :o) if you don’t have a smile to give today…  :o) I will give you one of mine…  :o)   *~*  

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