But Don’t You Want To Go?

I have a wonderful daughter, she is the first born of the family.  Emily is someone who is so unique, she is like a tapestry of wonderful.  She can tell you some breaking news, followed by something about eating organically then find you some talking citrus fruit on the internet.  She is full of love, for us, for life and especially for her siblings…she is like the Elizabeth whisperer.

Something else she possesses is a sincere wish to see the world, to visit places, and to help people.  To see the world, to learn, to live.  Emily is on her way to becoming a doctor and as such would like to combine travel and a desire to help others in need.

We have had quite a few conversations about traveling the world.  It usually involves me saying something like “Oh, that sounds interesting” when what I am thinking is “WOW, that is really a huge undertaking”  But then one night after another conversation about this topic, it really dawned on me why ….why I always felt so definitely about the prospect of traveling, sightseeing or visiting new places that I really know nothing about….why the very thought of attempting the above can at times make me feel nervous and sort of panicked at the same time…why talking about the new big things to try can at  times make me feel instantly tired.

And the reason is….I am 17 years into a journey with a daughter who has challenged me and our family in so many ways.  Ways that only those with similar stories and lives can truly understand.  Elizabeth and her disorders of SPD and dyspraxia have changed me from the person I was to the person I am now.

I have friends who not only attempted but had fun, at Walt Disney World with children ages six, five and one years old….all I could think about was when Elizabeth was their age, what would I have done?  The following is the actual order of my thoughts

1. OMG, I want to lie down!

2. I cannot image there would be much she would like

3. I CAN imagine all the sensory things she would HATE

4.How do you wait in line for all that time?…Elizabeth would be screaming.

5.THere would be NO way I could make this work for our other children and keep Elizabeth okay.

6.Can I go lie down?

Yes, I believe my conditioning came quite early…Isn’t it true? We, as parents of the special children know that we have a totally different line of thinking than the average parents do?  That things taken for granted by other are seen as challenges to us?  That successes. so quite often passed by, become celebrated events for us?.  I think that in finding and helping our children we have learned a certain way of thinking, of analyzing and acting.  Our children have help to shape our choices, even if those choices do not directly affect them.

As a child I was quite the tomboy and daredevil ( something most people who know me now  find hard to believe), so much so that each summer I would have one near to death fall of my bike/tree/patio each summer.  The kind of fall that has your parents enter into the “angry/scared zone”. Where they are yelling at you for falling at the same time as they are hugging you for still being alive and somehow also assessing you for just how bad you hurt yourself….So knowing this is how I used to be, I know that that spirit is still there.  I can feel myself wanting to try something or go somewhere or do something but then I enter the “pragmatic zone”

The “pragmatic zone” is the one that has been shaped by my life, the one that knows what is truly possible now, what we will be working on accomplishing in the future I love when Elizabeth asks or wants to try something new, and with that in mind, we will always try to help her succeed. and what is under the category of ” things that any parent who wants to be alive for her children should not do” The last category, in my opinion, includes things like freefall jumps off buildings…followed by your immediate arrest upon landing to fire eating…well you get the idea.  Anyway, I know that on this journey with Elizabeth, I have learned so much, changed so much and have an appreciation for the little things in life. so much more that others and those things are the gifts of Elizabeth,

But if I must be truthful, there has been collateral damage as well.  Never will I simply “Do: something with out thinking of the How, Where, When and Why…Never will I assume things are in order for Elizabeth…we will always need to be aware and alert,  Never will I completely let my guard down…I will always be somewhat waiting for the next situation/issue to focus on.  Never will I feel I can respond  “Yes, I would love to do that” without thinking about Elizabeth and her needs  Maybe I am wrong to feel this way, maybe I am not..but each of us who are raising these special, beautiful children know what I am saying.

I am staring at Elizabeth right now.  She is laughing with her sister.  Her blues eyes are sparkling clear and happy.  She loves life…she is worth it all.

But now I know, when Emily asks about my wishes to see the world and travel.  I know why my answers are what they are.  I am really at a place where I am content with that.  Only God knows if one day all those things will be possible  but for right  now I need to leave the far and wide traveling and helping and even free falling to others…

I wish you all a peaceful week and the best of days starting our new school years.

One thought on “But Don’t You Want To Go?

  1. Oh, MAMA, I so hear you, and I feel the courage it took to write this. Sometimes it’s so much braver and harder to stay, to “grow where we are planted,” especially when there isn’t really much of a realistic, pragmatic choice to do otherwise…
    Now *I* want to lie down ;)

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