Today is Purple Day

 

 

Today is Purple Day. It is a day dedicated to increasing epilepsy awareness worldwide. My daughter Taylor has epilepsy, but it is something that I never really gave much thought to until a few years ago. Taylor was diagnosed at 9 months old but her seizures were pretty much under control for several years. She’d have one or two seizures a year. Taylor had several other health issues that we were dealing with at the time so epilepsy was the furthest thing on our minds. That has changed in the past 2 years. Taylor’s seizures have become more frequent and more severe.


Today Taylor woke up in a fog, still feeling the effects of a heavy seizure day yesterday. The after effects of a seizure can take quite a toll on the body; exhaustion, headache, even temporary paralysis. The effects of several seizures in one day beat the body down. Imagine a boxer, picking himself off the mat after a hard punch, only to receive yet another that knocks him back down, then another, then another, until finally he’s on the mat, TKO, unable to stand. That’s Taylor after a heavy day of seizures.

Today is the third day of school this week that Taylor has missed because of seizures.

Today we are digesting a possible diagnosis of a serious form of epilepsy called Lennox-Gastaut Syndrome. We feel like the boxer too, after having received a punch in the gut. But, like the boxer, we’re standing right back up to take our punches. Just like all of the families who struggle with epilepsy. We’re a tough bunch. We fight back. We fight for our children, we fight for new medicines, we fight for awareness.

 Today, I wear purple. I wear purple to show my support for my friends and family members who struggle with seizures. I wear purple in honor of the wonderful friends I have met in my journey. I wear purple so that kids like Taylor, her friend Livy and so many others don’t have to wake up in a fog, don’t have to miss school, don’t have to have seizures.

Today, I saw the support of so many friends and family who wore purple. I love them all and I am so touched by their support.

Today, I felt blessed.

Today, I feel that I am not alone.

Charity - It does a body good!

Volunteering your time to charity is a lot like exercise. We want to do it, we know we should do it, but we seem to keep coming up with excuses for why we don’t do it. I’m too busy, I’m too tired when I get home from work, and I have to get the kids ready in the morning. Those are just a few excuses I’ve used to put off exercising.  And I’ve used some of those same excuses when it comes to volunteer opportunities.

 Another similarity between exercise and volunteering is that as much as you put off doing them, you feel really good when you’re done. Have you ever come home from work so tired that you just wanted to plop yourself down on the couch, but instead you went for a walk? After the walk, you feel refreshed, energized, and really glad that you got out and got active.

 Giving your time to serve others has the same impact. Exercise is good for the body, volunteering is good for the soul. And just like exercise, even small steps make a big impact. And there is now an app called Charity Miles where small steps literally do make an impact.

I just learned about Charity Miles from my daughter Lauren. Charity Miles is an app that tracks your miles as you walk or run and donates money to various charities. It’s like your own personal walk-a-thon for a charity of your choosing.

So I thought I would give it a try. I’ve been promising myself that I would start going for walks during lunch. My office complex has a beautiful walking path around a lake and the weather here has been spectacular. Plus I need the exercise. I chose Feeding America as my charity. I have volunteered for them in the past working in their warehouse sorting food donations for their food pantries. It’s a great organization, plus March is National Nutrition Month.

In two days, I walked 3.25 miles and provided 6.52 meals to hungry families. And it only took 45 minutes to do so! Talk about an impact….to both me and Feeding America. I now have motivation to get out and exercise each day and I’m helping a charity as I do so. (I'm envisioning a future blog post with before and after photos!)

 If you haven’t tried this app yet, you should. It is free to download and very easy to set up an account. There are a good variety of different charities to choose from – Special Olympics, Habitat for Humanity, Stand up 2 Cancer, ASPCA, Autism Speaks and many more. When you’re ready to go out for a walk, you simply open the app, select your charity and go. At the end of your workout you get to see how many miles you walked and the impact of your workout. You can choose a different charity each time if you like. I think I'm going to pick one a month.

You no longer have an excuse to not exercise or to give to charity. In fact you now have motivation to do both. I mean, how can you honestly skip a workout knowing that hungry families, abandoned animals, cancer patients, and many others are depending on you? Go on, just do it!

“It is one of the most beautiful compensations of this life that no man can sincerely try to help another without helping himself.” – Ralph Waldo Emerson

It should be every day!

So, my original goal of one charity a month was a bit lofty. What was I thinking? I am a mother of a special needs child. I have a full time job, a husband, two other children and a home to care for. In a nutshell, I’m human and I have a life that frequently takes over. So, as evidenced by my lack of blog posts, I haven't quite "Done Anything"! I am excited to say though, that I have scheduled a date to cook and serve a meal at our local Ronald McDonald House and I’m thrilled about that. I’m working on getting my team of volunteers together and I’m planning my meal and grocery list. I will write more on that as the time nears. But in the meantime, just thought I’d share my thoughts on Valentine’s Day.

Today is Valentine’s Day. Whoopee, big deal! To me it is really just another day. Now don’t get me wrong, I do enjoy the abundance of chocolates and other treats that tend to surface around the office on this day. But to me, Valentine’s Day is just like every other day in my life. I wake up and tell my husband I love him. I get my daughter ready for school, give her plenty of hugs and kisses and tell her I love her. I leave for work, kiss my husband and tell him I love him. I’ll talk to my two older kids sometime during the day and I’ll tell them I love them. Then, later tonight, I will kiss my husband again and tell him I love him before we go to sleep. You get the point and I’m sure you’ve heard this before. You don’t need a special day to tell the people around you that you love them. You should do that every day! And I’m sure we all do that. But what about the other gifts that are exchanged on Valentine’s day? Those also can (and should) be given any day throughout the year. Imagine how tickled your wife would be if she received flowers at work on any random day. I’ve been with my husband for 17 years and I think I have gotten flowers maybe 10 times. Probably 8 of those times have been random. It really does feel great.

It’s also Random Acts of Kindness Week. I think it is great that there is a week to promote Random Acts of Kindness (RAK’s), but we all know that we should do these every day. Seriously, how hard is it to just smile or give a compliment to a passing stranger? I have been the recipient of a compliment from a stranger and it made my day. I was riding in the elevator at work one morning and a very well dressed man commented that he liked my dress. Now I guess some would find this creepy, but I did not. I beamed from ear to ear and thanked him. Then you know what I did? I did what we should all do when we receive a RAK. I passed it on. I passed a woman in the hall and really loved the blouse she had on, so I told her. That one compliment really sparked something in me and I try to compliment people as frequently as possible. And my compliments are genuine. If I don’t like what someone is wearing, I’m not going to compliment them. But I will still give them a smile! Mother Teresa said it best, "We shall never know all the good that a simple smile can do."

I guess my point in all of this rambling is that we should not reserve a special day or week or holiday to show love and kindness to other people. Send your mother flowers on August 3^rd, cook your husband his favorite dinner on a Wednesday, pack a love note in your kid’s lunchbox any day of the week. To keep this in theme with my blog, we should also remember that charities need our help all year long, not just during the holidays. There are always ample opportunities during Christmas. You can adopt a family, collect food for a food bank, and even go caroling at a nursing home. But the food bank needs food year round, the kids in the family grow and need new clothes, the elderly in the nursing home sure would love someone to just sit and visit with. I am really trying to keep this in mind throughout the year and I hope that you will do. Remember, “There is no exercise better for the heart than reaching down and lifting people up.” – John Andrew Holmes. So go out and do your heart some good!

Just Show Up!

Livy and Taylor meeting for the very first time

I love this picture. It is from the first time that Taylor met Livy. As I mentioned in my first post, I read about Livy’s Hope and became acquainted with Livy’s mom Allison via Facebook. (Don’t forget to check out their website and read all about Livy and their mission). They posted an event on Facebook for a Wonka Bar sale at a local bagel shop. It was to promote their upcoming Imagine a Cure Willy Wonka fundraiser. Some of the Wonka Bars had golden tickets which would give the purchaser entry into the fundraiser. The bagel shop was close to my home so I decided to go out and show my support. As soon as Taylor and I arrived, Allison immediately recognized us and gave us a big hug. We met Livy’s sister Hailey (quite the inspiration herself!) and some of their friends and family. It was so great to join them and be a part of this fun morning. Livy arrived a little later that morning and we got to meet her for the first time. My heart just melted as I brought Taylor over to say hi. Both Taylor and Livy are non-verbal, but they did not need words. They spoke to each other as they do to all of us who know them – with their eyes and their smiles. This is the day it all started - the day that I realized that I can make an impact, even if I just showed up. I actually ran into a few people I knew who were coming to the bagel shop for breakfast and I was able to sell them a few candy bars. Maybe they would have purchased one even if I wasn’t there but maybe that small effort of just showing up made the difference of a few extra candy bar sales.

 

You know, I think about that day and how I almost didn't go. Sometimes I use my special needs daughter as an excuse to not do things that may make me feel uncomfortable or maybe would inconvenience me. “Taylor is in a bad mood or isn’t feeling well so I’ll just stay home”. But I didn’t let excuses stop me. I showed up. And we met some wonderful new friends.

Don't make excuses, make something incredible happen in your life right now. 

Greg Hickman  

Let's get Something Started

Do Something! That was the subject of an email I sent myself a few months ago. Yes, I send myself emails. I leave myself voicemails and send text messages too! I’m quite popular with myself.

Do Something! Those are two powerful words that can apply to just about anything. You want to get out of debt, start by cutting up one credit card. You want to lose weight, eliminate sweets from your diet for one week. You want to run a 5k, get up off the couch and start moving. You don’t have to make a huge accomplishment to make a difference. Small things add up to big change. You just have to start.

That idea can also apply to giving back. I’ve always wanted to be more charitable – give more money, volunteer more time. But I’ve always found excuses. I don’t have a lot of time. Money is really tight right now. But I realized that I don’t have to be “Volunteer of the Year” or have an endowment named after me in order to help. And that is what sparked my “email to self”.

It was right about that time that I found Livy's Hope for a Cure. I happened to read an article about them in a local newspaper. Livy’s Hope was started by Jon and Allison Scheinman. Their daughter Olivia (Livy) has suffered from debilitating seizures since birth. The goal of Livy’s Hope is to raise awareness and funds for Epilepsy research. As I read their story I felt so connected. I also have a daughter who has Epilepsy caused by a brain malformation. I reached out to Allison and we became acquainted via email, then Facebook. Then my daughter Taylor and I went to one of their events. I shared information about their fundraiser; invited people to attend and got a few people to donate items for the silent auction. It wasn’t a lot but even those little things made an impact. That got me thinking about a goal for the new year to start giving back, even in small doses. I decided to pick one charity a month and donate – time and treasures.
 

 It was also about that time that I started thinking about writing a blog. I’ve always wanted to write, although I’ve never really had any formal training. I was talking to my daughter Lauren about ideas for my blog. I also told her about my goal for the New Year and about my “Do Something” email. Then my brilliant daughter says, “Mom that should be the title of your blog! Every month write about the charities that you volunteered for and write about your experience.” So that’s how this blog got started and I really hope that people will read it and be inspired to start something on their own or maybe join me on my adventure.

 

One of my favorite quotes is one by Lily Tomlin that really speaks to this – “I always wondered why somebody didn’t do something about that. Then I realized I was somebody.” That’s kind of the theme for this blog and this project and I really hope that it spurs a lot of interest in giving back – to our friends, our family and our community.

I hope you enjoy this blog and come back often and share it with your friends. I hope you will join me in my project. Please add your comments and share your experience as you Do Something!