Picking Dandelions

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Matthew’s Sweet 16

Here we are again, the end of another January and Matthew’s birthday is less than a week away. This is never an easy time for Mike and I, but this year brings a different challenge with it. The Pandemic and social distancing have made it harder to stay busy. The past few years, I have had not only my yoga practice, but also the studio and teaching to keep my mind and body moving and occupied. There was an outlet for the emotions and thoughts that are harder to carry before our sweet boy’s special day. While I have been practicing at home, it is harder and harder to stay motivated without being able to escape to the safe space of the studio. With a job I loved and a schedule of classes, there were set times that I had be out and about. Without that, it is easy to find myself comfortable and procrastinating. Added to that, I have never been someone that sleeps well, with some nights, not...

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Quarantine as Matthew’s Mom

Here we are in this strange new normal. The entire world has been thrown into a time of social distancing and self-quarantine. Lives have been turned upside-down, businesses and schools have closed and we are spending more time at home than ever. For the strongest of us, it has been an adjustment, but for me, it has caused a unique struggle. March 23rd marked 5years without our sweet Matthew. It is a milestone that we had been dreading for some time. The longer it is without him, the more my husband and I are reminded that the world has continued to move on without him. The fear that our sweet boy will be forgotten is real and strong and it crushes us. While we think about him every moment of everyday, we are aware that others have lives of heir own and they move on as they are meant too.

So, every year around this time, I do my very best to stay busy and moving, to keep the...

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It’s a Date

There are so many days that I can tell, without even looking a a calendar, what the date is. I may not know the day of the week or the time, but there are quite a few days that I can always tell when they are coming. When I woke up this morning, I could tell that the countdown for the anniversary of the launch of Matthew’s Helping Hands was almost over. Four years ago, tomorrow, was our Kickoff Carnival, the very first MHH event and I can remember it like it was yesterday. Mike, Nina and I were still in a daze of shock and disbelief. We were moving through the days purely on autopilot. Every ounce of energy that Mike and I had was being used to make it to a reasonable time to go to bed and making sure that we did something to honor our sweet boy so that people didn’t forget that he was here and he was amazing! I can only imagine how hard it was for Nina to go to school and...

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Caught In The Weed

Over the past few days there has been a lot of information in the news about the approval of Epidiolex by the Food and Drug Administration for treatment of seizures, (At this point, it is approved for only two types of epilepsy. These are Lennox-Gastaut syndrome and Dravet syndrome.) making it it the first drug derived from marijuana to get FDA approval. This is exciting news to be sure, yet for me, it is bitter sweet. I am beyond thrilled for all of the families that have been given new hope and a new plan for treatment. THIS DRUG WILL SAVE LIVES! I want to spread the word and celebrate! At the same time, I want to scream and say why did this take so long!?! Where was this approval 3 years ago when it could have saved my sweet boy’s life?

This news comes on the heals of a hard realization for me. A friend of mine, shared that her daughter recently had a seizure. The first in...

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Snow Day

I am sitting here looking out the window on this cold but very pretty morning. The snow is falling and it’s the perfect kind. Huge, fluffy, white flakes that hit the ground and evenly cover it like a soft, fluffy blanket. The kind of snow that’s just begging for you to go outside and build a snowman!! The kind of snow, that makes me want to bundle Matthew up, so he can go out and play! He would have loved this day!! I would have spent hours trying to come up with ways to keep him inside for as long as I could so that my hands and feet would be able to thaw out before his next round of fun.

But it doesn’t take a long time, looking out my window this morning, before a blizzard of thoughts start to spin in my head. It can very quickly turn from this reflex reaction of going outside to play, and all of the other memories of fun times, to the crushing grief of the realization that...

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Finding My Strength - A Safe Place

The new year is almost here, and as the holidays come and the new year moves closer, it is easy to look back on all of the things that you are missing. It is easy to get lost in missing my sweet boy, the excitement of Santa, and knowing that a whole new year of possibilities, growing, and learning was just around the corner. It is easy to drown in how much I miss my sweet, handsome, Matthew. Today, I choose to hold on tight to my little ball of love and light, but also focus on what I have found this year. With a little help, I have found strength and grace and gratitude.

Sadness and grief have a way of stealing more than many people realize. Of course it takes your joy and comfort, but it can also take your motivation, hope and sense of purpose. Once you lose those, it is hard to pull yourself up.

On my birthday, in May 2015, my husband got me a gift card for yoga classes and...

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November

November is Epilepsy Awareness Month. It seems that every month is an awareness for something but for me, November is the one that hits home. I recently saw a Facebook post that said “I freakin hate Epilepsy”. I could not agree more!!! Epilepsy is a neurological disorder marked by recurrent seizures. This can look very different from person to person since there are several different types of seizures. Some seizures are so subtle that an observer might not even be aware that it is happening and some you cannot miss. They all, are hard on those affected by them.

Reading the Facebook post “I hate Epilepsy” instantly got my own brain spinning with all of the reasons why this is true for me.

I hate epilepsy because: My baby spent way too much time in and out of hospitals, he missed out on so many fun times (including his own birthday parties as well as his friends’, holidays...

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Connection

I find myself constantly being amazed by the love and connectivity in the world, in fact, the universe. I have written about the scavenger hunt that Matthew and I have been on over these past 2 years, 3 months and 18 days (but who’s counting besides Mommy) and all of the amazing ways that my sweet, handsome boy has shown that he is always here. But still, sometimes, it hits me so hard that I am thrown off balance.

In his too short, 10 years, Matthew had the gift of connecting amazing people. Because of his health and developmental exceptionalities, we were forced to join this community that I would never have been a part of otherwise. This community of special needs children, families, caregivers, therapists and health care providers. Within this community, I have met some truly inspiring people and have gained some of the most incredible, friends. Because of the shared...

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“I’m Just a Little Runt Now…”

The holidays are over and February 2nd is right around the corner. That very special day that Matthew came into this world and made it a much better place. My sweet boy, would have, SHOULD HAVE been 12 this year. I find myself always wondering how he would have changed by now. I see his friends and they are taller (not by inches but by feet) and their voices are deeper and some of them even have the beginnings of soft little mustaches. I wonder how tall Matthew would be and if he would have “beards” just like his daddy. He would get so angry and frustrated because he wanted to grow. I would always tell him that he was growing everyday and that he would be bigger soon. Even one of his favorite lines from a movie that he picked up, from Disney’s the Fox and the Hound showed just how much he wanted to grow up. “I’m just a little runt now, but I’ll grow”.

I hate that I was wrong...

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A Year of Firsts

This has been a year of “firsts” for us. Some of them, have been ridiculously hard and painful: The first Christmas without Matthew, first anniversaries and birthdays, without him, first family vacations with 3 of us instead of 4. BUT, some of these firsts have been amazing. it is the first full year of Matthew’s Helping Hands.

One year ago, in November, was our very first Matthew’s Helping Hands event. In the pouring rain and freezing cold, we had volunteers come out and work like crazy to make Matthew’s Helping Hands Kick-off Carnival a huge success! We even had one of the little ones tell us that it was the best day of her life!

It has been a first year of incredible partnerships throughout our community. We have worked with BB&T, Matthews Playhouse, Southeastern Institute, Marvin Ridge HS Theater, the Marvin Creek Community and Sangrock Black Belt World, to put on some...

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