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“I could never do what you do!”

7 Apr

It’s supposed to be a compliment.  People say it to special needs parents all the time as a way of commending them for their hard work and perseverance.

“I could never do what you do!”

Yeah, well guess what?  Eleven years ago, I couldn’t have imagined doing what I do now.  I had no plans on doing what I do now.  It was never on my radar that I’d be still potty training my daughter this close to her 12th birthday.  It never occurred to me when I gave birth to her that she’d live with us forever.  I never pondered the thought of adopting a child with special needs.  I hadn’t really been around any people with disabilities at all.  I knew nothing about special education, had never seen a neurologist, had never needed more than the basic medical intervention for my older three children who rarely even got ear infections.  We could go the entire year before seeing our pediatrician, because my older three kids were the epitome of robust health and early milestones.  Heck, even during her first year of life, Maura fell into that “happy healthy normal baby” category.

We never saw it coming.  There was no time to prepare.  Just one day – BAM! – we went from normal parents to “we need to run tests”.

I didn’t know what I was doing.  I flailed fantastically for a bit.  But I had no time to ponder if I could do any of this because things had to be done. Blood had to be drawn.  Evaluations had to be done.  Appointments needed to be made.  And three other children had to be cared for in between it all.

If I had thought about it, I probably would have crashed sooner.  But I didn’t have time for pity parties, I had to make my toddler catch up developmentally. By the time we embraced the idea of her delays being more permanent, two years had flown by.  Even then, I had to fit my mental breakdown between soccer practices and speech therapy.

There were things to do, and I had to do them.  If I didn’t do them, no one else would.  Not doing was not an option.

When Maura was diagnosed with epilepsy, I sat in the doctor’s office as they explained medications, and seizures, and handed me a big book to read about childhood seizures.  My first thought was “I’m going to need a bigger purse.”  It wasn’t until they handed me a medication with the words “rectal gel” on it that I thought “Oh forget this.  I can’t do this.”

But I learned about it.  I was prepared to do it.  Because there was no other choice.  It had to be done, and I was the one to do it.

When the fit hit the shan at school with Maura, I spent hours going toe to toe with the special ed director.  Not because I wanted to – I have always been more comfortable in the “non-confrontational” role.  But it had to be done if I wanted to make sure Maura got what she needed.

Did I think, almost 12 years ago, that I’d be here, in this role, as both mother and caregiver to a special needs child?  That I’d become a voice for her and families like us?  That I’d get giddy at the thought of new medical research?  That I’d be mentally designing a house with little features to help make life with a disabled child easier?  Could I have seen myself kneeling on the floor of a fabric store with my hysterical tween helping her calm down?  Could I have imagined any of this?

The honest answer is – “Hell no.”

It was never on my radar.  It was never part of my life plan.  It was never even a thought in my brain.  I wasn’t prepared for any of this.  I couldn’t have done what I do now.

But I learned, and I do it.  I do it because not doing it is not a choice.

I’m not a hero.  I’m not special.  I’m just doing what any mom who loves her child would do – learn and adapt and carry on.

Because not doing it is not an option.

 

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Speaking of those doing what they have to do, please check out my campaign to help out a single mom of ten who survived domestic abuse and got herself and her children out of the situation, but now needs our help…click here to learn more….

 

 

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8 Responses to ““I could never do what you do!””

  1. lisa April 7, 2015 at 11:59 am #

    I spent a good amount of time crying in my pillow and repeated “i can’t do this” but yeah, I have to do this. I think people are just thankful that they don’t have to do this. But if it meant that I wouldn’t have children then I guess I would agree to do it. When you have a child you have to think that this is a possibilty. If you honestly cant do it then don’t have kids. There is always that chance, although a very small one but hey, it happens. Now I am a advocate, hey there is even a greater purpose in my life. Bonus!!

  2. Joy M Newcom April 7, 2015 at 1:06 pm #

    And you live for (i.e., look for if you can but usually luck in) people who are willing to TRY to do what you do – even if only for an hour, an afternoon, or – God bless ’em – a day with an option of an overnight.

  3. Danielle April 7, 2015 at 1:18 pm #

    I totally agree! I get that too! How do you do it?? I don’t know either. I didn’t plan my life to do it either! I didn’t plan my future to include a special needs child the rest of my life. You are the parent. You just do it! You love them unconditional and that is your role. You just do it!!

  4. franhunne4u April 7, 2015 at 2:39 pm #

    Well my mother did not – she gave away her eldest son into the care of an institution cos the little girl she had after me might have suffered from the boy. So yes, not doing IS an option. I could never even have ONE child, without special needs, because I am not the mommy kind of woman.
    That is why I am saying totally honest and I really mean it: I could NEVER do what you are doing.

    • phoebz4 April 8, 2015 at 10:31 am #

      There is a difference between saying such things from a very honest person viewpoint, and those who say it as something that is meant to be a well-meaning platitude but comes off as a bit insulting.

      You saying you could never comes from an honest place, and I can respect that. Just like as much as I love my kids, I could never be a teacher – I have absolutely no desire to teach, nor the organizational skills required.

      • franhunne4u April 8, 2015 at 12:16 pm #

        And I have no talent for it, as I have proven twice in my youth – was not really able to help a friend of my sister’s with her English abilities and was not overly successful with teaching German to a Polish woman in our village, when a little older. But I managed to get some knowledge of my work into young adult heads … so that is that.

  5. thedreamermom April 7, 2015 at 8:10 pm #

    You’re an inspiration..I’m also a mom of a child with epilepsy.

  6. madonnajdunn April 9, 2015 at 6:53 am #

    YES!! THIS! I do it because what other choice do I have?? Leave my child in the hands of those who could not love her the way I do?? You put your big girl panties on and you deal with the shit on your plate. End. Of. Story. Yes we cry and we wail and weep and gnash our teeth. But at the end of the day we deal and we do it with as much love for our child / children as we can muster. Because what is the alternative?

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