As I sit here thinking of 2015 and all that has happened this year, I am tearful. This year has been filled with many great memories. I am blessed to have gotten to know so many other women and girls living with epilepsy. As I listen to their stories my heart breaks and rejoices with them. We talk about the good and the bad of epilepsy. We talk of our hopes, dreams, and fears. We share the things that we don’t want others to know about. We have become a community and a close knit one at that!
The My Epilepsy Story (MES) organization has had some changes this year. Our organization is growing and we are excited about the things to come in 2016. MES has added two new Board Members this year, Joshua Isble and Dr. James McAuley. In addition, we have decided to streamline our organization to focus on women and girls diagnosed with epilepsy as well as the children impacted by their mother’s epilepsy. This change is exciting for us. We know that we “cannot be all things to all people” as one woman told me a few years ago when I was starting the organization. We are going to “Bridge the Gap” for women and girls living with epilepsy. We will begin to have a “closed forum” on our website where women and girls can share about epilepsy and ask questions. In addition, we will have an “Ask the Expert” series on our website as well. This will give patients the opportunity to ask questions anonymously and get the answers they need. We will also be offering services on how to get the “Academic Needs” of girls living with epilepsy addressed and quickly. These are just a few of the exciting things ahead for 2016. I encourage each one of you to share with us what you would like to see happen in 2016!
On a personal note, my family and I are blessed to partner with so many other wonderful people across the world to change the lives of women and girls diagnosed with epilepsy, as well as the children impacted by their mother’s epilepsy. Our family is making beautiful memories while bridging the gap for others. Samuel is now 12 years old and in 6th grade. He is as tall as I am and doing well. I will not tell you that the days are always picture perfect because they are not. My husband, Rob, and I struggle at times when we see Samuel struggling. At night, on those days, I crawl into bed and cry while my husband holds me…. Rob is my rock! He holds our family together with his strength, wisdom, and guidance. We dream of Samuel growing to be independent, yet we prepare in case he is not. We push Samuel to be all that he can be and Samuel pushes us to slow down. He teaches us to look at the little things like the stars in the sky. We realize that he is our gift. Hannah Kate is now 8 years old. She is our beautiful and precious daughter. In life not everyone gets a daughter but we are blessed to have her. Rob loves his sweet little girl, Hannah Kate and tells her everyday how much he loves and adores her. She is a Daddy’s Girl and her daddy’s favorite as he says. I am proud of the girl that she has become. She is always helping others and loves the ones that no one else loves. And then we have our last but not least, David. David is now 6 years old. He is always making us laugh. He keeps our home light and full of joy. David lives life to the fullest and this reminds us everyday to do the same. David and Rob are carbon copies of each other especially in this way. David and Hannah Kate adore Samuel. They are always helping him and annoying him at the same time. They ask him endless questions about the stars, planets and of course, Star Wars. Our family is blessed even in the dark times when we don’t understand the “why”, we have each other and that is a blessing. When I see my husband give of himself everyday to make our home our resting place, I am thankful. Rob said a few weeks ago, “I hated the holidays before I met you. Now my life is full of making beautiful memories with you and our three beautiful babies! I get to replace all the bad memories of the past and horrible holidays and replace them with good, beautiful, and perfect memories. This is what I am thankful for every day of the year. God has blessed me with the perfect family!” You see, even in the not so great things of life, we get to find the amazing things that come from them! We have many dreams and hopes for 2016. I look forward to sharing those with you all soon.
So in closing, as we have been blessed to share our family with you, we are blessed to be able to have other women and girls share their families with us. Each day my husband and I say that we look forward to the AMAZING things to come. I do believe in miracles and so many are beginning to happen. I am blessed to be able to have this community of women to share with. I am blessed that I get challenged by them to push further and share the not so fun things in life… Hannah Kate has a pen pal with a little girl, Lily, that has a sister with epilepsy. I have an ornament hanging on my Christmas tree of a little boy, Hudson, that was born to my friend Mariellen, who lives with epilepsy. I get to listen and encourage Liz and Ashley as they navigate through college while living with epilepsy. These are just a few stories I could tell… I have an AMAZING new web designer, Shane, that works tirelessly for our organization by designing things and coming up with new ideas! I have an AMAZING group of Board Members that encourage me and strive to help change the lives of women and girls with epilepsy. I have had the wonderful opportunity to meet people from companies that want to get involved and partner with us (more on this in 2016). Who would have thought that one woman and little boy would have started a change for others with epilepsy? Who would have thought that the little boy that some horrible people call “retarded” would be a world changer? Who would have thought that a few years ago something that started with a passion to change things, is now a nonprofit? Who would have thought…..
The McFadden Family (Rob, Brandy, Samuel, Hannah Kate and David) wishes each one of you a Happy Holiday Season and Wonderful start to 2016.