Thursday, March 15, 2012

Team Oatmeal

If an adult needed to talk to someone about a concern or something that bothered them, they would typically know who they could turn to, to talk about these issues.  But what if you were seven and had some questions about your sister who has special needs and didn’t want to necessarily talk to your mom and dad about something that was on your mind in case it would hurt their feelings?

Well, this has been a subject that has been on my mind ever since Anna Cate had her diagnosis of Rett Syndrome.  Right now Betsie is an AMAZING sister to Anna Cate and she doesn’t let Rett Syndrome bother her.  She tells everyone all about Anna Cate and isn’t afraid to speak her mind.  Right now.  And I hope this is how it will always be.  But what if something changes?  What if she was afraid to ask someone in our family a question for fear she would hurt our feelings OR we would judge her for asking that question?

Early in the fall I was talking to a friend who has three children as well and her daughter also has special needs.  We started talking about siblings and how we wish there was a place to take them so they could talk to others who are experiencing the life of having a sibling with special needs too.  Our local Children’s Hospital used to offer this service, but hasn’t for years.  My friend mentioned she had a friend who has said in passing that she would do this if there was interest!

After a couple of phone calls our first meeting for children who have a sibling with special needs was formed!  There are two boys (both second graders) and three girls (one first grader, one third grader and one fourth grader).  They came up with a name for their group and they called themselves “Team Oatmeal” (we have no idea why…but that is okay…this is their group).  These five children met for six weeks and formed a special bond that only they understand.  During the sessions they were able to talk about their siblings and learn that it is okay to have questions and concerns.  But they also learned how to talk to someone about them and that they now have four friends they can share a concern with (five if you include the teacher too!).

The kids had so much fun with each other that the moms decided to still have them meet once a month.  We meet at a local restaurant and we let them get their own table to be able to have their own conversation.  While they may not talk about their siblings or something on their mind pertaining to their sibling with special needs, they know now that they have someone who they could talk to who would understands and will not judge.  These five children have already learned some of life’s hardest lessons and are incredibly strong and have huge hearts, but I know as they continue to grow, they are going to be amazing adults and ones we could all learn from.

I also wanted to share a story from our first monthly dinner (post 6 week class) that I shared with Girl Power 2 Cure and is now the Story of the Week.

Last Tuesday was the last class and Betsie brought in (GP2C) flower tattoos for everyone with her piece of paper from the half marathon (image above). Everyone, including the two boys put them on! The boys put them on their "muscles"!
Last night we met with the group for dinner and one of the mom's whose son is in the group told me the cutest story. He is the second of two children and his 10-year-old sister has Angelman's. He is in second grade. He went to school the day after he got the tattoo and took his long sleeve shirt off, which then revealed his tattoo. His friends started teasing him that he had a flower tattoo and he looked at them and said, "Let me tell you something, this flower is special because it stands for a syndrome my friends sister has, and I'm spreading awareness by wearing it!"
And that was the end of the teasing!
Love him!

As I said, these kids are amazing!  I am so happy that not only has Betsie found four new friends, but I also have four new friends….the moms!  It is always refreshing to find someone who understands and just “gets it”!  I think I look forward to our monthly dinners just as much as Betsie does.  And this summer I can not wait to get all the families together.  I know these friendships are going to be lasting ones.  Thank you Britt for spending these six weeks with our children and being there for them!

Saturday, March 10, 2012

Friendship to Cure

Aren’t playdates wonderful for our kids?  Either a friend comes to your house and your child is entertained by their friend until it is time to leave.  Or your child goes to their friend’s house and you have some quiet time, or one less child for the afternoon.  Either way, it is pretty nice to have this time to yourself!.  Well, what about when your special needs child wants a playdate with her friends, but can not tell you?  Or you know she wants her friends to come over, but how will the play date work out?  This is what happens in our house very often.

Anna Cate sees Betsie and Eli’s friends running in and out our front, back, and side doors like we are a fast food restaurant.  And so often when I look at her smiling at them I know it is because she wants to go with the kids and be one of them!  I know her friends bring her so much joy and she eats up the attention from them, like a bear likes honey!  However, when Anna Cate has a playdate, it immediately also becomes my playdate.

Last summer I started Camp Amica for Anna Cate, so she could attend a camp and be around her typically developing peers she goes to school with  and who live in our neighborhood (and yes Camp Amica will be back this summer!).  Every school year, I hope and pray there will be “friends” for Anna Cate to invite over for playdates and girls (or boys) who truly are interested in her.

Third grade has been amazing for Anna Cate both educationally and socially.  Once I realized that there was a good amount of “interest” in Anna Cate and friends truly wanted to be her “friend”, I was ready to start the having playdates for her.

Anna Cate’s friends are truly genuine girls!  As I mentioned in an earlier post about them, they truly care for her.  One Sunday, Anna Cate invited her friend Kyla to come to the pool with us for the afternoon.   The smile on Anna Cate’s face lasted for hours!  Kyla brought such joy to Anna Cate that afternoon and it was one of those beautiful moments you want to remember forever.

Two weekends ago, Anna Cate had a play date with FIVE friends from her class…yes FIVE!  We had so much fun!!!  Alexis, Ellie, Kyla, Madison and Susie arrived at 11:00am and stayed until 1:30.  Betsie wanted to stay and play too and Anna Cate said it was ok!

First the girls made a video about their friendship with Anna Cate.  They called it, Friendship to Cure.  Did I mention these girls are amazing?  They wanted to film it in Anna Cate’s room….why not, that is where girls hang out when they get together anyway, right!  I loved hearing all their responses and what they love about Anna Cate. They wanted to show everyone that Anna Cate is just like them--she has a favorite color, a favorite movie, etc.  It truly melted my heart!!!

Then we played spin the bottle….ok, not that bottle….the nail polish bottle!  This is the second time Anna Cate has played this game with friends.  I love it because it is EASY, FUN and Anna Cate can participate!!!  Everyone sits in a circle and then at one end we have all the nail polish colors lined up.  The person who is picked to go first (you can pick this person however you like), will pick a color and then spin the bottle in the middle of the circle.  Whoever it lands on, THAT person has to paint one nail the color that was spun.  And then this person goes next.  And so on and so on, until ten toes or ten fingers are all painted!
The girls had so much fun helping Anna Cate pick which color she was going to chose by holding up two options and letting her point to one.  And they LOVED painting her toes.  Honestly, I don’t know who enjoyed it more, them or Anna Cate!

For lunch I made the girls one of the popular lunches we made at Camp Amica, ham and turkey kebobs with fruit.  They were a hit again!  Madison’s mom LOVES to bake, so she made a special treat for all the kiddos (and I was so happy there were leftovers!).  Cupcakes with frosting and then a chocolate cookie on top…yummy!!!

After lunch the girls wanted to take turns playing Just Dance on Wii.  Anna Cate loved watching her friends be all silly and this is one of her favorite games to watch because she enjoys the music.  While Anna Cate’s friends waited for their turn to play, they all sat next to Anna Cate and talked to her.  It was so cute!

While the playdate was work for me as I had to “play” too, there were definitely times when I took a step back and let Anna Cate be alone with them.  I wanted her to feel like she was a ten year old typical girl without her mom around.  I hope as she gets older, I will be able to take more steps back when her friends come over and they or Betsie can help her a little more.  Maybe one day I can be in the background the whole time!  But until that day, I will try to be a “cool” mom and help her to have fun playdates with her friends.  Nothing makes me happier than seeing a smile on Anna Cate’s face and knowing that she is truly happy!

I was able to sneak downstairs and catch them on the camera in Anna Cate's room having "girl time"

Thursday, March 8, 2012

13.1 miles for love

If you had told me a year ago that I was going to run my first half marathon in February 2012, I would have said you are crazy!  I could not even run to the stop sign without getting a shin splint, let alone 13.1 miles!

Well, sometime around the end of the summer someone affiliated with Girl Power 2 Cure got this great idea (yes there is some sarcasm here!) to get a Girl Power team together to run the Disney Princess Half Marathon.  I kept looking and looking and looking at the posts on Facebook every week.  Then one day after seeing a post I started thinking about this run.  Thinking, that I am crazy, this is 13.1 miles and you hate running!

Then I thought, Emilie, do you think you can actually do this?  Do you think you can run a half marathon?  Maybe was the answer I told myself, maybe if I had some friends to laugh and cry with every step of the way!  So I asked one friend and then another friend and before I knew it, I had four friends who said YES!  And then three more jumped on board!  SEVEN friends running a HALF MARATHON for Anna Cate….there was no turning back now!  Will was a little skeptical, as he didn’t think that I would “stick with it” as I tend to start and not finish some activities.  If I was smart I would have made a bet with him for something!!!

Luckily for me, many of the runners on the Girl Power 2 Cure team were first time runners too, so Girl Power 2 Cure was fortunate enough to have Chris Twiggs from Jeff Galloway put together a training program for us.  This was music to not only my ears, but my legs and feet too!  For those of you who are not familiar with the Jeff Galloway Method, it is a run/walk combo.

After five months of training, half marathon weekend was here!  I can not begin to tell you how moved I was to have seven wonderful friends join me in Disney to run a half marathon for Anna Cate.  Despite my crazy life of sleepless nights (which got better during the training….THANK YOU ANNA CATE!), doctor and therapy visits and chasing my other two munchkins around with their daily needs (and wants!), I still found time to train for this race.  While, my friends who ran with me do not have the “special needs mom” title and all that comes with it, they still have their families, a job and all the every day things that come with being a wife and mother….and they still found time to train for the race too!  Thank you to all of Anna Cate’s Fairy Godmothers for taking time away from the important people in your life to help someone special in mine.

Here I thought we would go to Disney and have a relaxing girl’s weekend away before race day on Sunday.  I not only came home exhausted, but sick as a dog!  We left here Friday morning at 7AM (got up at 3AM, left for the airport at 5AM) and we were on the Disney property by 10:00am!  After picking up our race packets we headed to Epcot before dinner.  By the time we ate dinner at 8:30PM, I had hit the wall!  Wow!! I was exhausted, but then again I was up for 17 ½ hours!!!  And here my dad and step mom flew in from Texas to cheer me on and spend time with me and I was falling asleep at dinner!  I felt awful, but there was nothing that I could do, except maybe I could have tried to keep my eyes open with toothpicks!

On Saturday surprisingly we slept in till 7AM (sad when sleeping in is 7am).  And then headed to Magic Kingdom, which is always so magical!!!  Disney is fun for me with and without kids, but your perspective changes once you see Disney in the eyes of your children.  It was fun to go on rides with my friends and act like children ourselves!  After a fun filled afternoon we went to our Girl Power 2 Cure team dinner, where we officially meet Chris Twiggs himself!  He gave us a motivational speech, we meet our team members who we have been talking to on Facebook for about five months, and we got to meet three special ladies who would continue to be our inspiration for the next morning’s run!

After dinner we headed back to the hotel to try to get to bed early as 3:00AM was going to come real fast.  Yes, that is right; 3:00AM is the time that we had to be up, as we needed to be transported by Disney to the race area by 4:00AM!  We did it and we looked like it was 3:00AM too!!!  A couple of us even wore our pajama bottoms under our running skirts to keep warm until it was our time to run.  Yes, I was one who donated my pj bottoms and an old sweatshirt to charity!  I can not stand to be cold!!!

By the time that my corral started the race it was 6:15AM.  I had my good friend from high school, Sally, run with me every step of the way.  By the time we got to mile 3, we looked over to the left and saw the girl who would be the “winner” of the half marathon on her way back to the finish line!  We had 10 more miles to go and she had 3!!!  It was unreal!

Disney did an OUTSTANDING job of having something for you to look at all along the way to help take your mind off the race.  Characters, bands, the actual parks, cheering crowds, looking at the outfits people dressed in (some wore full on costumes!), you name it!  People actually stood in lines to wait to get their picture taken with a character!  We did not, but we did get our picture taken after we ran through the castle in Magic Kingdom, as we couldn’t resist! 
Thinking back on the race now, I don’t know if it was the fact that there was so much to look at all along the way or that I had an incredible friend to talk to the whole time or a combination of both, but the run wasn’t bad!  It was actually great!  Crossing the finish line and getting that medal was a feeling you can’t imagine, you have to experience it for yourself!  And if you are running the race for someone or for a cause, it makes the feeling even more emotional. 

Will I do the Disney Princess Half Marathon next year?  You bet!  Without a doubt!  And instead of having a team of eight on Anna Cate’s Fairy Godmothers, I would like to double it and have a Sweet 16!  Where else can you go and be treated like a Princess and be a Fairy Godmother?   

“You will feel fulfilled when you do the impossible for someone else”