I Loved You Your Whole Life

Like an instinct I knew you were there.  I held onto the small plastic device that would in a near instant be the confirmation I did not need.  I could already feel you burrowing into a place deep beneath my heart, immersing every part of my existence in a new level of love I had never felt before.  I was filled with so many emotions, astonishment working as a mask to cover the fear of the fact that you were not planned.

Like a trance you immediately came over me, the love I felt becoming more powerful by the day.  I had a new strength I did not know existed within me, a will to stand and fight wars of words, to overcome obstacles out of the realms of this world to protect you.  You quickly became the only thing I truly needed, the one thing I did not realize I was missing in this life.  You became my everything.

Like an instant change of course you became my future, the clarity I had never had before.  Every single plan now surrounded you; things I did not even know could be desired for were now my only focus.  My every will to become a better human was to make you proud of the person you would one day call Mom.  I wanted different for you.  I wanted better.

Like a constant motivation you drove me to treat my body like the temple it always should have been.  I had an untamable desire to keep it a perfect place for you to grow.  Every single; bite, step, and hour of sleep carefully calculated to be sure that you would continue to thrive.  If only it could have been that simple.

Like a flash the winsome world that you had created with your presence abruptly turned to shades of grey.  The eight weeks of perfection that had been your life had become endangered by symptoms that were getting worse by the hour and words spoken by carefree doctors in cold emergency rooms. The echo of “threatened abortion,” still haunts me to this day.

Like an instinct I knew when you were gone.  As your heart beat slowed to a stilled silence, so did the parts of me that had any will to keep moving.  A certain death overcame my very being; a pain enough to match the love I once had living deep inside of me, a despair masking any joy I once had.  I could not remember how I even used to breathe before you.

Like a forced sense of self-worth I had to will myself to survive.  The person I had been before you ceased to exist.  You came into this world forever changing me and then left, taking pieces of me with you.  I had to continue with what was left of me, however small those pieces may be.

Like a tattered sailboat drawn to the shore, I came to find my solid ground.  It hurt me to think of what had become of the person I wanted so badly to be for you.  I needed to do better, not only for my own well being, but because to not do so was to openly admit to myself that losing you left me no longer your mother, and that was a thought I simply could not bear.

Like a prayer I carry you inside my heart to this day.  The nine years that have passed without you often seem like an eternity compared to the nine weeks I held you.  The very foundations of the mother I am today are owed to your existence.  Not a day goes by where you are not in my thoughts.  Four children now to fill my arms and I still wonder what it would have been like to hug five.  I know one day we will be reunited, until then I will continue to live on knowing I was blessed to love you your whole life.

Living life with a child who has Epilepsy...

Whether you were told by a doctor that your child would likely suffer from seizures or your child began having seizures unexpectedly, nothing can prepare you for a life with a child who has epilepsy.

When our kids are hungry, we feed them; when they are sick, we give them medicine; when they are crying, we console them- but when your child is seizing there seems like there is nothing you can do about it, but wait it out.  Sure, sometimes we have to give rescue meds, but for all the times when the seizure is a few minutes, or not strong enough to give rescue meds-THAT is when this helpless, awful feeling hovers over us.  We just watch and wait, praying for the end to be near.  This goes against every momma law there is.  It is our natural instinct to protect our children, but epilepsy doesn't care one...little...bit.

I don't know about you, but I was seriously clueless about epilepsy and seizures before my miracle boy was born.  All I had known about seizures was what I had seen on TV or read in books.  Boy, did I get a rude awakening and a lesson in seizures when my son began having seizures at 6 months old.  As my sweetness got older he introduced me to a variety of different types of seizures.  I first met the Tonic Clonic family (and their twins Tonic and Clonic who like to show up multiple times throughout the day), then along came Ms. Atonic (aka Head Drops), not long after Mr. Myoclonic (boy he sure is an aggravating fella too), then Mr. and Mrs. Partial (Mr. Simple and Mrs. Complex that is..).  I was so overwhelmed meeting all of these seizures and learning their crazy personalities.  They like to take turns visiting, but sometimes it's just a big ole party where they all want to attend.  So not my kind of party.

Caring for a child who lives with seizures day in and day out is mentally and emotionally exhausting.  You live with heart ache.  You live in fear waiting for the next seizure.  You live a life that feels lonely and alone.  Sure, you might have friends that understand your journey, but it is extremely rare to have someone TRULY get it.  Even in your own family, surrounded by a crowd of people who love you, you feel singled out.   You live a life of anxiety waiting for the next seizure, you live a life learning how to phrase your child's seizure over the phone so that the neurology nurse can picture it, you live a life full of doctor's appointments, EEG's (and how to get that nasty glue out of their hair), anti-seizure medicines, and researching ways to help your child.  It is a life that we didn't ask for, but it's a life that we take on gladly to help our child.

Though raising a child with epilepsy is hard, it isn't about us.  It is about our sweet miracle child that endures these electrical brain storms.  Making their life enjoyable is our life's mission.  Aggravating the neurology office on a weekly (sometimes daily) basis for answers, pleading with them for another VEEG, begging to try a new med, or even the calls where we just cry in defeat, it is what we do....for our child.  Watching your child digress developmentally from seizures is not acceptable.  The momma bear in us comes out and fights her way to finding an answer, a solution to the problem that is epilepsy.  And then we momma's are hit with the reality that epilepsy is a killer.  It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.  This fact hits us hard because if this hasn't happened to us personally, we know someone from our support groups on social media who has.  We cry in fear of our child being taken by the epilepsy monster and we cry for others who long to hold their child again.

Epilepsy is real. Epilepsy is life changing. Epilepsy takes lives every single day.

November is National Epilepsy Awareness Month, I want to leave you with these facts (from epilepsy.com)

-Anyone can develop Epilepsy, at any point in their life.

-Epilepsy is not contagious.

- Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined.

-You can die from epilepsy.

-Epilepsy research is GREATLY underfunded.

-Epilepsy DOES NOT define a person.  Most people with epilepsy CAN DO the same things that people without epilepsy can do.

Seizure first aid is so important, please take a moment to review this poster from the Epilepsy Foundation.  You never know when you might need this vital information.  And PLEASE help spread Epilepsy Awareness!

 

50 Pounds of Mashed Potatoes

Today is 11/12... three days after the Night of a Thousand Stars, special dinner-dance we have as an annual event for people in our community with challenges, their families and caregivers. Once again, it was a pretty successful evening. Although it was raining outside, the room was filled with sunshine and warmth.

On Friday we had an orientation for our volunteers, after which, we begin setting up and decorating. This time we were able to have all things completed by about 9 pm. The list of volunteers was filled with people of all ages and backgrounds. There were JROTC cadets, National Honor Society members, civic groups and some people with disabilities who wanted to volunteer, rather than attend. The most touching moment came when a lady walked in with a bunch of little ones aging about 6-12 marching behind her. They announced they were there to help- and the did. They all went straight to work, putting on chair covers, putting luminaries up the stairs of the stage and helping to put on table clothes and lay out napkins. I asked the obvious, where did they came from and how did they know we needed help? It seems that one of the churches sending volunteers sponsors a cottage where these kids who are in the foster care system. They thought that the idea of them helping others would be a good project. The kids asked questions, worked hard and left knowing that they would not see any of their hard work in action. I made a note to myself that after everything was done, these kids had a pizza and ice cream party coming their way!

A few weeks before, I had gone into a local restaurant and asked if I could get a discount on 50 lbs of mashed potatoes. I was asked to wait while they got the chef. By the time he reached me he knew that I was there to ask for something. He reached out his hand and said hello, then had the amazingly warm look on his face. He said, "What do you need?" I answered, "we would like to purchase 50 lbs of mashed potatoes for our dance and, if we could get a discounted price that would help even more." His eyes met my serious face and then he gave me this big smile and said, "You got it! What else do you need?" I told him that was it and I walked out with this incredible feeling of warmth because a man I never met, just gave us 50 lbs of mashed potatoes to help make the evening great for our guests!

This was only one of many good deeds from the community. I can't help but think that there was so much more in that evening then just providing a special event for some very special people. It was an awesome chance to see many diversities at work in a happy and loving way. We had a very well known local weatherman come in a greet our guests, the mascot of our Tampa Bay Rays, Raymond made an appearance, dancing with our guests and taking selfies with them, the lady "pirates" of the local Krewe came to visit. Before leaving weatherman Denis told me we could count on him again next year. The Krewe hugged and kisses us all and even offered to do a fundraiser for us next year. I had already been told that we could count on Raymond's visit as long as we had our dance.

Next year, we need to find a bigger place. We had to turn away about 30 people because we were filled to capacity. We are already searching and hoping to find that perfect venue.

The reason for a piggy back blog about the Night of a Thousand Stars Event this month, for me, is to just give you all the chance to hear about how special and unique our kids are and what incredible things they are able to bring and accomplish. So many of my volunteer's hearts were touched by the joy, happiness and laughter within that room. What is so wonderful is that it is so easy. You share your caring and you get back huge amounts of gratification and joy! I cannot wait until next year! P.S. As of yesterday, 11/11/2014, we have established our non-profit Night of a Thousand Stars Foundation, Inc. It is our hope that we are able to not only bring this very special event to our area but increase our Foundation to offer, advocacy, education, awareness, information and events not only relevant the special needs community but, to to promote togetherness for everyone!