Oh sweet girl…

How can it be that time again?  That pleasant reminder of when you arrived in my arms but yet so sad because your journey was cut way too short.

I always envision me being very stoic and strong and making it through with grace on this day. For the most part I do, but there is a hole that will never be filled.  A pain I can never fully recover from.

I still so clearly remember when you were laid in my arms 11 years ago.  I was a mom for the 2nd time and so extremely excited to have my “my little girl”.   I had dreams of pig tails, dresses, you and I shopping, you becoming a sassy teen, and me being there for you when you were to be married some day.

But, what a turn that all took when you were diagnosed with Kleefstra syndrome.  I quickly found my job was to be here for you and do all I could to help you grow and thrive.  And, even through all that, did I ever in my wildest dreams think all YOU would do for me in your lifetime and beyond.

After you died –  that next morning –  I remember telling your Dad I had lost my purpose.  He quickly shared I was a mom to your brothers but I told him that keeping you here, advocating for you, trying to make you be the best you could be was what I also saw as a huge part of MY purpose.

God blessed me with you and he, of course, knew I’d step up to every challenge thrown my way.  And I did…or I tried.  I learned from day 1 of your diagnosis I was far from in control of the next hour or day and you dying also clearly displayed that.

So, when you were suddenly gone, I felt so lost, confused and useless. But, I told your Dad that I knew I needed to help others – THAT gave me purpose.  I told him that something else was in store for why I was given this journey.  And I would take it when it came my way.

I told him that when whatever it was I would know and I would do it.  It was part of who I had become because of you.   And it was what I needed to continue to heal my broken heart.

So, in January I started a new journey.  I started working for and with the Epilepsy Foundation, specifically with a mission on creating awareness about how you died – SUDEP (Sudden Unexpected Death from Epilepsy).

Not sure how it would affect me emotionally, I just jumped in, much like I do any challenge. Jumping in was what I did with you when I found out about your rare genetic syndrome and your rare epilepsy.

So, in just a few short few months, I have cried, supported and spoke passionately about stopping this loss.  A loss I want NO ONE else to feel.  A loss so unnecessary.

And while the huge gaping hole of you missing is still present, I finally feel more peace.

Peace about you being gone. Peace about why you were taken.  Peace at why I have to live the rest of my life without you.

Am I here to say that peace is consistently felt?  No.  Are there days the crushing blow of MY daughter being dead is present? Of course.  But, do I feel more at peace about my purpose?  Most definitely.

You see, I find reasons every day why you came to us and why you suddenly are gone.

For me to be a better person.

For me to find my voice to advocate and fight for others.

For me to find perspective and not worry about what doesn’t REALLY matter in life.

For me to learn who I am and the true strength I have.

For me to see the lives you touched and still do.

To learn about and be ingrained in the special needs world.

To be a voice for those that have suffered a loss from epilepsy.

For your Dad and I to learn about true partnership, doing this life TOGETHER and communicate effectively.

For your brothers to see perseverance in the wake of challenge, to feel empathy beyond themselves, to see challenged and know they are needed to be the soft, kind heart this world needs.

For the world to see how one little girl can make such a difference in how we think, feel and speak.

To show those around us how to support the bereaved and grieve with someone without shame.

You my daughter – you are the BEST teacher –  and always will be for me and so many that did or didn’t know you.

I never thought I’d be here today on your birthday working for the exact fight I became part of when you were diagnosed with your rare epilepsy.

That I would be talking about you EVERY day. That I would be hugging strangers and crying with them and supporting them in the only way I know how.

That I would be helping to be the voice to make change for the exact reason I lost you.

But most of all…I never thought I’d find the peace I have in helping others. In showing the world that although I will never move on from your loss, I WILL move forward and move forward in such a way I am hopefully making a difference for others.

And so, today, on your 11th birthday what is my hope?

That you are proud – Of me.  Of us.

11 years ago I was so blessed…I was chosen to be YOUR mom.  Thank you for being my teacher.  Thank you for showing me all you did so now in your death I am finding peace being there for others.

My birthday wish today – continue guiding me to where I need to be. Where I need to help and where I need to make a difference. I know you are far from done.  Your work and YOUR purpose will continue – I’m sure of that. But, most of all I’m ready!

I love you sweet pea. Forever 7 but 11 today in heaven.  Forever and always you will be my sunshine.  My light.  My guide.  My way.  Not a day goes by you aren’t in my thoughts.

Love always – Mom

XXXOO