Through the looking glass

I read a lot of blogs.  Ok, I take that back, I use to read a lot of blogs.  Mainly, when I had Lyd I would read about the journeys of other special need parents.  I would get a glimpse of them on Facebook or through an email from another mom and open them immediately.  It was like grasping for air as I tried to read as fast as I could to find and hopefully see the commonalities I thought we all held.  The commonalities that didn’t make me feel like I was completely alone on this journey.

During my quiet reads I often found myself shaking my head in agreement or wanting to shout “AMEN!” upon reading their points.  I often felt validated and justified about the twisted, hard, emotional, gratifying, blessed life of a special needs parent.  Most blog entries, I found I felt like I knew that writer, often moms pouring their hearts out to everyone on the journey.  There were times that I found they would write about things even couldn’t find myself to say out loud.  I applauded their strength and courage to say what I often felt but scared to put out there.

But, even after the thousands of entries I read over the last 7 years with Lydia here there was always one either by blog or by Facebook post that I wanted to cry foul on.  The one I couldn’t fully feel like we were on the same page, living the same life and sharing the same ideals.  Now, don’t get me wrong, I’m not saying they really don’t mean what they wrote- I just didn’t share the same sentiment….at THAT time.

I know, I’ve peaked your interest…what is it, what is it that they could possibly say that I am now calling them out on?   What could possibly be so different about my journey as a special needs parent that I couldn’t come to terms with as the same as theirs?

It isn’t a big statement, but honestly a small one and it is this (regarding their special needs child):  “I wouldn’t change a thing” or “I’d choose this life all over again if given the choice.”  When I had Lydia I would read these words and immediately want to shout out at the writer…are you crazy?  Are you nuts?  Why in the hell would you write such lies?  Are you doing it for readership? I wanted to grab those writers and say “everyone already knows you are a super hero – no need to try to post this to make them believe it.”

I know – this is calling a lot of people who have written these words. But don’t stop here. Read on – there is more to this.  When I would read those words this is what immediately came to mind (and not in any specific order):

  • I would of course change having to have my child go through countless hours of therapies.
  • I would change having to watch my child struggle to meet every milestone so easy to a typical child.
  • I would change having to meet endless specialists and listening to words of her health that were often terrifying and scary and sad.
  • I would change hospitalization after hospitalization, poke after poke, test after test.
  • I would change sitting behind, waiting, praying trying to distract myself for surgery after surgery.  Often the words resonating in my head from the anesthesiologist “you know special needs children are much more at risk when they go under” as I waited.
  • I would change watching her being taped down with masking tape as a baby to an x-ray bed to see if there are any unknown anomalies.
  • I would change the fear in my son’s eyes when at age 5 he said “mommy, I’m so afraid she is going to die.”
  • I would change trying to guess what is wrong when she is screaming and crying because she can’t talk.
  • I would change cooking dairy free and gluten free diets because otherwise we would end up in a ballistic rage and stay up all night.
    • I would have changed the 3 months of screaming, ER visits and many specialist visits to find out on my own she needed a dairy free diet.
  • I would change being told at 8 months old her lungs were so damaged from silently aspirating she may need a g-tube.
  • I would change following ambulance after ambulance ride feeling helpless as I was in my car while my child was in stranger’s hands.
  • I would change having to be so emotionally removed so I wouldn’t be in the fetal position in the corner rocking endlessly to handle the sadness, helplessness and anger the journey led us on at times.
  • I would change the financial burden of having to hire caregivers so I could work and make sure she was taken to therapies, safe on her ride to and from school and helped after school. (I wouldn’t change those girls – they have become family).
  • I would change having to fight for her rights in the school system time after time.
  • I would change having to review for hours on end her IEP’s for the 4 hour meetings that would ensue at school.
  • I would change having to be a tireless advocate with dr.’s, nurses, school, and even those around us who didn’t understand our world and most importantly HER life.
  • I would change having a 7 year old in a diaper and cleaning up 7 year old shit.
  • On that same note I would change having to clean up shit off the floor or splattered all over her bed and walls.
  • I would change having to stick needles into my daughter’s stomach to help her immune system.
  • I would change having to have needle in her arm for weeks on end to help fight an infection.
  • I would change having to lug around a diaper bag full of extra clothes (see previous point of BM), diapers, wipes and toys for a 7 year old child.
  • I would change having to lug a heavy wheelchair everywhere as well as often carrying a child who often didn’t help navigate her growing body.
  • I would change all the tears of helplessness I cried when I couldn’t “fix” her.
  • I would change her first day of kindergarten which diapers, wipes, bibs, spoons and all the supplies a baby would need.
  • I would change the stress her illness caused on my marriage at times.
  • I would change the relationships that evolved due to our emotional journey.
  • I would change having to feed, dress and bathe her.
  • I would change watching her seize in helplessness and screaming at her when her oxygen hit 20% and her face turned gray “YOU ARE NOT GOING YET!  YOU STAY WITH ME – IT IS NOT YOUR TIME…LYDIA – YOU STAY WITH ME!”
  • I would change sitting in June 2013 getting the worst diagnosis yet – Electrical Status of Slow wave sleep seizures – ultimately seizing in her sleep and we couldn’t see it.  The diagnosis that shook me to the core, left me sobbing for many days. So much so that I left the hospital where Tom took over for 3 days.
  • I would change feeling so removed emotionally from her while hospitalized she became my patient and not my daughter.
  • I would change trying to fight for a law and spending time away from her and my family.
  • I would change coming home from a nice get away to see my dead daughter laying in her bed.
  • I would change having to watch my husband sob next to me as they gave us options for caskets.
  • I would change hearing my son say to a friend at the funeral home “do you hear my mom? She is crying SO hard.”

You get it.  I would change it all if I could. All the hard things. Other parents who voluntarily take on a special child…well, I put them on a different pedestal. I certainly applaud them. They are truly amazing people.  But if you gave me a choice all those years ago KNOWING WHAT I KNOW NOW…honestly, I would have changed it.

I would have wanted the little girl with the pigtails who could feed herself, gave me her sassy mouth when she wanted to pick out her own clothes, who fought with me when I told her that her curfew was 11 PM and she wasn’t to date a particular boy.  I would have wanted the little girl who someday  would get married and I would have the pleasure of holding HER babies.  I would have changed worrying about her life expectancy each and every day and making it my ultimate goal to have her live.  I would change the immense loss and the giant hole I feel each and every day without her.

I would change it with one caveat.  Yes, the old cliche is to be said…”it is a double edged sword.”  I’m thankful for how everything (and beyond that I didn’t list) shaped me.  The friends I gained, the things I learned. Who I became.  Ultimately, this journey changed me in a way I would have never seen coming.  Not the emotional walled up part, but the advocate, the girl with the strength, the courage found to move forward, the will to never give up, the desire to not let the frustrations keep me down, and the ability to smile most days with one foot in front of the other.  The woman who became thankful for the little things, celebrating every milestone – being inspired.

But as you can see you can’t have one without the other.  How did I become who I am today?  The journey.  So, like I said it is a double edged sword. I had to endure the journey to see its purpose.  But, having said that, I would have changed her life, her struggles, her pain because having been through it – no one wants their child to have to go through all she did.  I’m thankful however for it too because selfishly it is who I became from being Lydia’s mother.  Me.

While most of her life was filled with happiness (or so I thought) it was also riddled with pain, suffering, anguish, frustration and disability that stopped her from being what society deems perfect.  But all that pain, suffering, anguish, frustration and disability shaped me. The mom, the wife, the friend, the daughter and the sister I am today.  I grew far more than I ever thought I would from this experience.  I learned.  I became humble to struggles – my own and others.  I became more empathetic. When I love, I love deeper. When I give, I give more.  She helped me and others grow in ways they wouldn’t have otherwise had they not known her.

But, I hated watching my only daughter go through all she did.  I would be asked time and time again “how do you do it?” and my response was usually “you just do.”  But that isn’t said without hiding the depths of the pain you feel because NO ONE should want that kind of struggle on their own flesh and blood.  You find yourself walling your emotions so high so you become numb to everything around you so it doesn’t hurt so bad, so you don’t cry too much.

I realize I couldn’t have one without the other. I would have changed her and the situation if I was ever asked. All the ‘stuff’ I mentioned above I would change in an instant. If asked this question 7 1/2 years ago and given a looking glass and viewing this journey and even me – I would have changed it.  While I’m thankful for how this journey molded me into someone totally different I would have changed it all if it meant saving her.

So you see it is a double edged sword.  The looking glass was never given to me. I never had a choice. Don’t get me wrong, the journey blessed me with a lot.  More than I could ever express here. But if you were to ask me now, I would have changed her.  I would have changed how tough her life was for her.  I would have changed her struggles. I would have changed her pain.  I would have changed how painful it is for us now.  While through her short time here she impacted the lives of thousands and hopefully still does, if I could go back, if I was ever asked – I would change everything so she was still here with me.

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