The greater plan

While life wasn’t horrible for me growing up, it wasn’t the one I read about in books or saw in the movies.

My dad left my family when I was just 3 years old.  He further put salt on the wound by telling us to vacate our brand new home.  Finally, he decided another woman was the key to his future and heart.  He barely called and we were lucky to see him once a year.

At 3, I barely understood the basics, much less why my Dad didn’t seem to care. We had no other choice but to move in with my grandparents, who in turn would be a second set of parents.

Although I know my mom didn’t exactly see living with her parents as part of her dream, it was a blessing of some sort for me – I spent more time with my grandparents than others who didn’t live with them.  But, growing up, I knew my mom struggled.  She had to go back to get an education, live with her parents with 4 kids and figure out life being co-dependent on others to help her.

I was young, but I wasn’t dumb or naive.  I watched as she painfully navigated the work world and watched her dream of being a stay-at-home mom with 4 kids vanish before her eyes.

My mom worked long hours, depending on my grandparents for help with us so she could build a client base to succeed long-term in her new role.

My dad…well, he never came around. When he did he had no idea what we liked or didn’t like, often didn’t pay child support and would promise to call us every Thursday,  He abandoned that promise after the 1st call.

Her and I…we never talked about what she thought was the “why” my father left. The psychological piece of it and what it meant long-term for her.

She also never spoke about if the education she received or the career she had for so many years afterward was the one she loved and felt passionate about.

If I had my guess, I’d say she thought she was good at it, did it and made a living to support us as best she could. I don’t think any of it was easy or any of it was in her dreams either. But, it was what she had to do to survive and stay afloat.

As I grew up, my grade school years were filled with families with 2 parents.  My classmates often made it blatantly clear how different of a dynamic I had.  I can remember in 1st grade standing in line for the bus and another child pointing out that I had to do my science project alone or with my mom because “she doesn’t have a dad.”

1st grade.  That’s what I was told.  Teachers, at the time, talked about how “bad” divorce was (I went to a private school) and because of that I often felt singled out.

As I grew, I watched my mom make her place in the world.  And most of my years of grade school and high school I was privy to see the strength and grace she carried – on her own.

I also watched and heard as family and others chastised HER and not my father for the separation. I watched as my mom raised 3 growing, hormonal, not-so-perfect boys by herself.  And that wasn’t easy.

As I aged, I also had to find my place in this world and look for my way.  That path wasn’t always clear nor was it easy.  I got lost a few times.  I think I subconsciously struggled with pieces of my past that I hadn’t fully come to terms with (more than just the divorce).

However, with a degree in hand I finally walked across the stage with my cap saying “We did it Mom!”

After years of a rocky start with my now husband, we finally married when I turned 29 and started our family the following year.  To be honest, I think it was surprise to everyone we walked down that aisle.

The day of marriage…simply put – shit show.  I mean debacle after debacle occurred.

I laugh now because it became the epitome of our marriage but looking back – it is now comical.  To explain would take some time and may bore you but trust me when I say it was one thing after another on our actual day.  I always say I think it was a warning for the challenges ahead.

When Lydia was born never did I think the little girl I had so badly wanted and dreamed of would be special needs.  But, it was the hand we were dealt and I think, overall, we embraced it well.

As a couple we laughed when we needed to, held each other when times got tough, traded places at the hospital and communicated with each other more than ever before in our relationship.

But, Lydia’s life was not without many challenges.  Over 25 hospitalizations.  Over 19 ambulance rides.  Many tears.  A few times of begging her to stay with us and not die.  And many prayers.

My brother recently reminded me of one of our first conversations after Lydia was diagnosed. I wondered out loud to him why WE were given this journey.  At the time of her diagnosis, the phrase “everything happens for a reason” seemed trite and utter BS to me.

Why would be given a special needs child? What could I possibly learn from all this?

But, I learned a lot.

With her life we learned so much about ourselves.  My husband became a changed man.  Lydia took a not-so-patient human, who wasn’t sure he could be a special needs dad and turned him into a caring, loving, even patient man.

She taught us perspective. She taught us unconditional love. She taught us about differences. She showed us resilience time and time again.

I mean the endless things we learned from having a special needs child can’t be possibly described here in this blog. I know I’ve tried and fall short.

When she died, I thought the same thing – “how on earth could there be a reason behind her dying?”

But, even though I fight it, I have seen how her dying has changed me.  How it has shaped and molded not only me, but people that knew and didn’t know her.   I just wish I could have done this WITHOUT losing her.

I was told recently that I will never know the full impact of her life and how my education in so many arenas have changed other lives.  Sometimes, I need to hear that – life is black and white to me and sometimes “reasons” such as these are ones that help me when I never can fully understand why she was taken.

So as I enter 2018, I have been reflecting on “everything happens for a reason.”  And I no longer find it all irrelevant or untrue.

While some of the things that happen in our life are hard, hurtful and challenging – I believe that some of it happens to us for a reason.

They make us who we are to become.  Or maybe who someone else is supposed to become.

I mean think about it – I’ve heard examples of “I was running late and missed a horrible, fatal accident by seconds – had I left on time that would have been me”  or “I met so and so and they changed my life forever…they taught me this or that or got me the job of a lifetime.”   These events happened for a reason.

I met a dentist at a party when Lydia was just a few months old who mentioned that “everything in the body is connected.”  And just a few months later, that connection helped me to evaluate and question further and find out about Lydia’s diagnosis.

My childhood also shaped me.  I often wondered why I didn’t have a dad around.  Why didn’t he care?  I saw my mom hurt and it was hard for me to watch. But, I also saw her persevere, work hard and be a strong woman.  I’m sure at the time she wondered why her, why us?  What did she do to be handed this?

But, little did she know (or maybe she did) I was watching closely the entire time.  I was cataloging set-backs and triumphs.  I watched how she handled it all.

And while my mom struggled and it wasn’t easy, watching her shaped me to be the special needs and grieving mother I am today.  Her pain, her questioning “why” was not without reason.

With her example, I learned how to fight for things I wanted.  I knew that I had to succeed on my own because someday I may have to stand on my own.  Be an advocate and voice for my children.  Fight for them.

Did I stumble along the way? I sure did.  For example, my first few years of college I felt lost and confused but found my way, moved colleges and graduated with a degree in healthcare management.   Medical terminology, anatomy and phys and many classes I took helped me navigate the healthcare world that Lydia threw me in.  See it again?  Me being lost, moving colleges and finding the degree I did – happened for a reason.

I can look back at almost everything I’ve been through and realize, parts of it was the life I needed.  I  needed the challenges, the successes, the struggles and all the in between to shape me OR shape others.

I could give you many more examples of something happening and the result but just trust me – they are there. If you look in your own life you could probably find them too.  Some not today, but down the road.

The life I’ve had has molded me to who I am today and who I will become. I firmly believe there is a plan and I need to wait patiently while it unfolds.

It is not my timing.  And maybe some of what I go through or going to go through is influencing someone else I will never, ever know about.

In a few short days, I will embark upon a new career.  One where I can work everyday as the person I became when we were given the diagnoses of Kleefstra Syndome and afteward, epilepsy.  A position that uses my advocacy skills that were awakened from day 1 of knowing she needed me to be her voice.  A position where I am in my element – helping others.

You see – everything I’ve been through in this life has put me in this exact moment.  My unfortunate, sad and unthinkable events have led me to some of my inner passions and to something I hope I can excel at…living to work, not working to live and in the process hopefully saving lives.

And who will be the guiding force behind what I do every day?  My sweet girl.

When I sit and think about all that led up to 2017 there are some pieces I still struggle with understanding.  I, of course,  have not liked or accepted many of the tragic things that occurred.  But, when I look at it all and analyze it piece by piece – there is a greater plan I need to try to embrace.

Do I wonder what other challenges and successes will come my way?  Of course. Death has scared me in that way.  And will some of what I face put me in the throws of “why me?”  Of course, it is human nature.  But only I can take adversity and change how I face it.  Will I succumb or will I persevere?  How will it mold me?

I hope as you look back at this past year and maybe your life, you too, realize that this is the life you needed.  For me, it is clear (some painfully clear) that it is what made me who I am today…and who I will be in the tomorrows to come.

On January 8th, I become the Director of the SUDEP Institute with the National Epilepsy Foundation.  Lydia was diagnosed in 2013 with ESES, a rare subclinical (nocturnal) epilepsy. She subsequently died in May of 2014 in her sleep from what we believe to be SUDEP – Sudden expected death in epilepsy.

Part of my role will be to create awareness and educate on SUDEP with many audiences – medical providers, medical examiners, scientists, researchers, those with or caring for those with epilepsy and finally those that have loved ones to epilepsy.   The goal is to get more people talking about, researching and resolving death from epilepsy.

I look forward to this next journey. I wish I never had to have lost Lydia to be in this role but if I am to live on this earth without her,  I want to forever make a difference in the lives of others.  I also hope that this position happened for a reason and it springboards into meeting other people who bring more to my life.


3 thoughts on “The greater plan

  1. What a moving post, Sally. Thank you for always being so open, and all the best in your new role I know you’re going to be amazing! Happy New Year!!

  2. Such maturity. You are such a force and an example. I heard the truth again this morning that in our weakness the Spirit and the Son are praying for us. God is always at work when we don’t know, and in ways we cannot imagine. He is so big. Our Pastor said “God is not your Grandmother, He is an EARTHQUAKE.” I look forward to the amazing difference you will make to those like Margaret who suffer from Epilepsy. I love you my friend.

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