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.

Summertime, Summertime, Summertime

This is my first post in a while due to the recent death of my beloved Dad and then following immediately on its heels was the start of summer.  Wow, it was quite the emotional and exhausting Spring.

I think I am just getting my “sea-legs” for Summer.   We started the summer with a biking camp for Elizabeth.  It was from the “iCan Shine” company.  That was five days of watching Elizabeth go round and round in a gym on a special bike.  The last day was GREAT, she went outside on her own bike and RODE IT.  I was watching her circle the gym for an hour and 15 minutes each day thinking so many things.  Perhaps you can relate?

1. I AM SO PROUD OF HER –  I think this so often, but then once in a while I REALLY think it and this was one of those times.  Imagine having to work so hard each day for all the things you want to do and still smiling and laughing.  Elizabeth is a very pleasant and warm young lady.  I am not so sure, I could be that person if I had to face all she does each day.

2. I WANT THE WORLD FOR HER-  Ever since Elizabeth was a young child, I hoped the world would open up for her, that she would have all the opportunities open to her, that she could follow her interests  and be given every chance possible.  Our children work so hard at just plain life, that to be denied any opportunity would be heartbreaking.

3. I WANT THE WORLD TO UNDERSTAND HER-  After having advocated for Elizabeth for so long, I truly want her disorders to be understood and therefore SHE would be understood  I do not mind having to explain how Elizabeth “works” to any and all who ask or are going to work with her, but to have them know SOMETHING about her disorders would be fantastic.  Just think how nice that would feel to go into a meeting/classroom and be met with questions about how your child shows signs of the disorder as opposed to ” I am sorry, but WHAT does you child have?”

4. I PRAY FOR PATIENCE AND CLARITY OF THOUGHT-  There are times when I think, “We have been at this marathon for over 16 years”  I know I want the best for her but like all parents of special needs children know, patience can wear thin.  I pray for the clarity to know when I need a break, a moment, a prayer.  I pray I can close my mouth when I want to correct, I pray I can open it when I want to compliment and I pray I know when those times are.

5.  I LOVE THIS CHILD SO MUCH- There she was, smiling on that bike, helmet on, squishing down that mass of curls and she was happy.  I would move any mountain for her….I believe in this child.  Period.  And as she was peddling away on this bike outside, I look up in the sky to see the beautiful eagle soaring above us.  The same eagle that has been above us since my Dad died.  We see if often and regularly.  I feel it is my Dad telling us he is okay and that he is with us.  My Dad had a very special place in his heart for Elizabeth.  He called her his “penny from heaven”  She remembers this with a smile.

So I looked up in the sky to see this eagle….I was happy to see it there.   “See Dad” I thought.  “She’s doing pretty well, help us keep and eye on her”

We ended camp that day, and began the next part of summer.  I am happy to say Elizabeth is enjoying the relaxed pace of summer and is laughing and happy,.

I am getting there…..I know we have an amazing guardian angel to watch over us.

Wishing you all a peaceful week.

 

 

 

 

 

It Was Just a Bandaid

It has been forever since I have written a new post.  Life and a family illness has certainly stepped into my best laid plans.  I am sure we all know about that.  Just when you think you have things in order….you don’t.

It is that control thing again.  For me anyway, to be able to put something in order, or figure it out or organize something, makes me feel in control…of at least something.

But control can be a tricky thing.  If you try to control things and for a while all is going your way… when all is right with the world and you are just humming along,  you sort of feel empowered.  You kind of have that feeling like “Yep, I can relax, I have put things in order…so I am good”   If you get too much of this feeling, when things get complicated or out of order, it feels worse than ever and takes you longer to recover from the skid.

If you try to control things and you just CANNOT get things to go your way a certain level of frustration and then for me anger starts.  Kind of like asking yourself  “Why can’t I get anything to go the way I want”  At times like these, it seems hard to have one thing in order let alone enough to feel calm at all.

I bring up the control thing because it is my struggle.And again if I am being honest…the thing I wish to have in my control the most is all the goes on with Elizabeth and her disorders of dyspraxia and Sensory Processing Disorder.

I think because so early on in our journey with Elizabeth, I never knew how she was going to act in public or react to a situation or person that I tried to control so many variables that I got used to doing that.  We never went anywhere without my thinking through so many things…the where, the when, the what…and on and on of every situation.   It seemed if I did not do this, we would have a bad experience.  So I got conditioned to try to be in control.

As Elizabeth has gotten older, her world has become quite complex….I mean, come on, have you ever tried to follow the subtle nuances of the typical high schooler’s life.  Let alone their conversations.   As such, I have had to learn to lessen my hold on this control.   It is NOT easy, especially is you are me.  I am still working on this lesson

But life teaches us these lessons again and again whether we want them to or not.

Let me share the aluminum foil story…..

Elizabeth is walking around with a rather large bandaid on her finger today.  A bandaid to cover the nice slice she did to her finger grabbing the aluminum foil.  The aluminum foil I asked her to get to cover the dish before we put it in the oven.  This dish that was our dinner that night.  I asked her to get the aluminum foil.  and she grabbed it but she grabbed the sharp edge and …yep you know the rest.

Why does that nicely bandaged finger bring me to thoughts of control? Because, I again tried to remember everything when we were cooking.  How to break down the steps so she would succeed in doing them ( for her dyspraxia)  How to encourage her to touch this messy bowl to finish the recipe. ( ode to her SPD).   How to have her put something into the oven without burning herself.( just plain safety here) …need I go on?

I guess what I am saying here is…even though I was so busy trying to control variables …I can’t control them all….none of us can.  I am sure I have had these same epiphany many times before but for some reason this really hit home this time.

I watched Elizabeth deal with the blood, the pressure on her cut ( it was a bit deep too) and then the bandaid ( a BIG one).  She was absolutely great about the whole thing.  Because she was so great, it got me to think how far she has come, and that even though I try, So many things are simply not controllable.  I want to use this experience to help me remember this fact….to remember it when I want to fix her world…to remember it when she heads into a store for the first time….to remember it when I feel nervous.   I want to remember it period.

I need to be there for Elizabeth when something happens that I could not control instead of mentally chastising myself for letting this one slip through my layer of control.

I plan on using this experience to help me.  I offer it out to you to as well.

It really was just a bandaid on a finger but to me so much more.

I hope these thoughts help someone dealing with their own control.

I wish you a peaceful week.