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.






Lessons From A Nursing Home

I never really thought about it, the fact that each moment you can walk out of a door to the outside should be regarded as a great moment.  Or the chance you have to sit outside your home and watch the trees blow in the wind.  Or the fact that when you get to pick what you want for dinner and feed yourself you should rejoice.   I never thought about these things until my family was brought face to face with the world of a nursing home.

As many know who follow my Facebook, my beloved Dad recently passed away after being in the nursing home for over three years.  Dad was an amazing man. Full of love and wisdom, hugs and humor.  To watch his decline and spend his last days holding his hand have left me quite emotional and if I am truthful, quite pensive.  I prayed for his peace, I prayed for him to go to God, and now that he has, we are left…thinking.

I can remember one particular Sunday, after being there at around 9:00 to noon to help my mom.  I was headed home, I rounded the corner to get to the door and I looked at a little older gentleman in a wheelchair.  He was sitting there staring out the door…just staring.  I said” good afternoon” to him and also “excuse me”  as I went around his chair and pushed open the first of two doors to get out.  I was greeted by fresh, cold air (it was Winter).  But that air that felt too cold just the other day, felt fantastic at that moment.  It was that one moment, that one second in my life I will alway remember.  I was alive, able to move, able to go where I wanted.The man in the wheelchair could only look.  This moment has been the catalyst to so many thoughts over the three years. Continue reading