My gift!

    I had the pleasure of meeting a friend that I met through our journey with Epilepsy this morning for coffee. I often think of the gifts I have received by Meghan having Epilepsy. There was a time that there was no way I would say there were any! My denial stage.  The one that i would say that I couldn't do this, I don't know what to do stage?  This is one of them.  Meeting all the moms, families, providers.  The people that you will never forget!

    I was fortunate to meet 5 very special women on one of the first Epilepsy Foundation support group meetings I attended.  It was more than a decade ago.  But still after 13 years we are friends, actually family.  A very special group/family.  They know things about me that no one else does and visa versa.  We have all gone through stages where we are depressed, joyful, overwhelmed and ANGRY! But those 5 women have helped me actually saved me.  We sometimes call each other the same day and other times we don't speak for months.  But we all know that we can if we need each other.  We all have gifts.  I have the gift of gab!  That comes in handy sharing resources, books, ideas, techniques and ways to help their child.   The bottom line we all help each other in the journey.  I believe God put these women at the meeting and gave me what I needed.  We all get together, not as often as we would like but we go out to dinner and enjoy each other.  If there is one thing that I would say has  helped me are these 5 women that God put before me. If you are in this place with Epilepsy or a chronic illness find a friend that is in your circumstance.  The bond you will feel will be natural, special and perfect.
 The other gifts that I have received are touching peoples lives. Some that want you to and others that don't.  I think about all the lives that we have touched over the years.  It could be the plebotomist that took Meghan's blood weekly, the cleaning lady at children's that would always have a smile on her face, the school districts, the teachers, the families, lindsay's friends.. the list goes on and on. I also have gained the opportunity to speak in front of hundreds of providers/doctors and tell my story.  I have worked on Epilepsy projects, wrote for various organizations in parenting a child with chronic illness and made people hear our story.  Good or bad.  I have been on tv several times, wrote newspaper articles and help others in their journey.  I think the biggest gift I have received is that I was trained almost 30 years ago to work with brain injuries.  God put me in that position and now I am equipped to do all that I need to for Meghan and others.  What a gift that is.  I didn't want to hear it from my mom but she was right. I had the skills to do this and do it well!
     All of us have gifts.. What is your gift? I feel blessed to be able to recognize my gift.  Can I help you or someone you know?  If I can please contact me at Epilepsy Awareness Resources.com

High School here we come!

Here we are another start of the school year.  It never ceases to amaze me how many things there are to do for a child with a medical condition for school. This year I had started with being the Parent Engagement liaison at our High School, a registration time for students that had special education services.  Only a few parents took advantage but it was very well received.  Even doing this there were so many things that clearly are not applicable to my kid and why not?  Why can't I get the information ahead of time so I can turn it in like everyone else?  Why don't we know what section of Biology is for girls only?  The list goes on and on.  I know that being the advocate that I am, this will change.  But this takes time, lots of it and patience.  I continue to strive for more understanding, knowledge and treating our kids the same as the other students.  I know they have challenges, issues but don't we all!
As we start the year for Meghan, her sister is now in the building as a freshman.  It is so refreshing to have them in the same school.  I know for Meghan she loves seeing her sister even if she doesn't show it. In fact, I think it was the second day at school she told me the best part of her day was seeing her sister! It will be interesting to see if Lindsay likes seeing her sister? That is something still up for debate.  Coming up very soon is Homecoming dance.  Ofcourse Meghan is going maybe with a caregiver this year but she's going even if just for 1 hour.  Her sister on the other hand is worried about being asked by a  guy? Who she is going to go with ? Etc Etc.  I think sometimes our kids with special needs have a better attitude.  They don't worry about all the social pressures and just enjoy the moment.

So this is going to be a year of transition, change and adolescent at its peak.