Maggie is awesome, LGS sucks and love is the answer

So, my first blog ever.  I have written stuff in the past and posted on Facebook but this is my first true attempt to try to do something meaningful for myself, hopefully others and to help me express my feeling about life, death, grief and happiness.  It is a space where I will try to just give you a look at life from my perspective and talk about things from the point of view...a man trying to get through life, living it fully by getting my hands dirty, loving people and pointing people toward Jesus by the way I live.  Yeah, I will talk about God and Jesus now and then.  If that upsets you I'm sorry but I have come to terms with the world and the world can't give me everything I need, only Jesus can.  I hope and pray you read it anyway because some of it can be funny, some of it sad, some of it educational, and maybe even you can catch a glimpse of some really cool people I have met in my life.

Here is my first story.  A heavy hearted one but one that is fresh on my mind and you will understand why quickly.  It is sad but educational and will give you a glimpse into the Lyons family.

I have thought about life a lot lately.  The purpose behind it and the reason why I am here.  It has been really one of those times I have looked at myself and tried to answer the question of why I am here.  What is my purpose?

What started this thought?  I lost my daughter Maggie (Mags) a little over 7 weeks ago.  It was completely unexpected.  My 16 year old daughter died in her sleep.  The doctors call it SUDEP.  It is like SIDS but for adults.  Adults with neurological disorders are more susceptible to this type of death than others.  Mags had Lennox Gastaut Syndrome (LGS).  What the heck is LGS?  The best way to put it is this.  She had epileptic seizures (all kinds) that could not be controlled by meds.  You can give them meds but you are typically trying to battle the volume of seizures rather than stopping them fully.  The goal of every parent of an LGS kiddo...stop seizure activity permanently.  LGS sucks.  It is humbling.  It is frustrating.  It is merciless.  It is tiring.  It is a daily grind you would never wish upon another person.  It, at times, provides a feels of hopelessness and dismay.  LGS just plain old fat sucks. 

LGS does have a by-product though.  It produces a great number or fighters.  Kids that are trying their hardest to live a daily productive life.  Kids that strive to make the best out of every day with what they have.  Kids that are surrounded by parents that wish only the best for them.  Parents who are fighters as well.  Parents who would give anything of themselves just to see the smile on their child's face.  Parents who are tender, kind, loving, compassionate, selfless and caring.  Parents who endure a grinding hardship and still find a way to smile and find happiness in the littlest of things.  Parents who have truly learned to appreciate life in its smallest detail.  To an outsider you may only see a child smile at a song that is sung to them.  What you may not know is the child hasn't smiled in two weeks and the familiar songs lets them know they are loved and in the presence of a parent who would do anything for them.  That comfort blanket of compassion just resting on their soul.  That small smile could be the fuel for the parent to endure another day of the daily grind.  Just one small smile.  There is a unmatched bond between the child and parent.

So why does the death of my daughter force me to look inwardly.  I guess grief makes you ask a lot of "why" questions.  A lot of them for sure.  I can sit here and tell you I asked myself "why" a million different ways.  It truly is a fruitless effort.  I can only focus on what I know and what I believe.  I can only reflect on things of which I am certain. I want to share those with you.

I know Maggie lived in a house full of love, in a community that loved her. She was surrounded by a family that would do anything for her. She was loved. She knew she was loved and she tried her best every day to share that love. How do I know? Mags was non-verbal but her eyes and smiles spoke for her. They said thank you for loving me. Thank you for giving me a good home. Thank you for being my friend. Thank you for being my teacher. Thank you for being my nurse. Thank you for the hug. Thank you for the kiss. Thanks for letting me play in the mulch. By the way, I really like dirt. Thank you sis. Thank you bro. Thanks Momma. Thanks Daddy. I love you. As most of you know, Maggie could not talk, but said more and influenced more people than I could ever dream of.

Maggie was a superhero. Maggie couldn’t read a book but made contributions to science, medicine, and education. Maggie is one of three known cases worldwide with a certain genetic mutation which led to some of her challenges. I called her my own little X-Woman. She challenged people at school to find ways to make things work and accommodate her. She didn’t take no as an answer.

Maggie was a life-saver. Even in her death she gave. She donated and helped aid others and contributed in research to support people who have LGS.

Maggie was a fighter! Maggie wasn’t gifted with the best body in the world and she endured physical pain most of us would cringe at. She was the epitome of tough. Somehow through it all she still smiled. I do know this, for every minute of pain she endured, there is an endless amount of joy now.

Maggie lived life! She got her hands dirty when others wouldn’t. The girl loved dirt. Covered head to toe was her preference. She also expanded her tastes to mulch.

Maggie was a lover! She loved to kiss. Everyone, anytime, anywhere.

Maggie was a thief! She stole many hearts but she was also a master at stealing food. I would equate eating at our home to eating in a prison. Get big in the paint, keep your elbows out and an eye on your food. You had to protect and defend every bite at the table. If you snooze, you lose.

Maggie was a secret fan of musicians, especially drummers. The girl could beat the heck out of a leg, desk or table. She could pound a good desk with the best of them.

Maggie had smelly feet. She put them everywhere. She was not a big fan of keeping socks or shoes on. Mags loved to shuffle those feet through the grass, leaves or snow. She showed them off proudly while putting them on your head, lap, desktop or headrest. Mags even broke Kathy’s windshield with those powerful little toes.

Maggie couldn’t run well but managed to run a full marathon with a little help from her family and friends. She had a way of running into people throughout her life. Literally and figuratively. Those little bumps carried a lot of influence behind them. Their impact was resounding and life changing for many. It was her little belly bump to the world.

There are many fond memories and many things I will cherish but the one resounding fact which carries me through all of this mess is this: Maggie loved God and God loves Maggie. Maggie understood carrying unconditional love in your heart was the key. God gave us all faith, hope and love. The greatest of these being love. There is only one prayer I have for you today. I pray you all live a life that is as full, wonderful and far reaching as Maggie’s.

So if you asked me today, why am I here living the life I do?  My answer is pretty simple, to love like Jesus loved, unconditionally, at all times, under all circumstances.  He died on the cross and even then gave forgiveness because we did not know what we were doing.  God died to save us all including Maggie.  I know I am a sinner and His grace covers me.  He paid my debt for that sin.  I was, currently am and will be a sinner until the day I die.  But he still forgives.  It is just crazy love that allows Him to do that.  I also know God gave His only Son to the world and the world crucified Him but Jesus freely gave His life.  Again crazy love!  The least I can do is live a life that guides others to Him and teach them to love as He did.