Sunday, February 26, 2017

Spread the Word to End The Word

Throughout Sean’s life the R-Word was spewed at Sean and myself more times than I can count.  

During Sean’s worst bullying moments this word was the center of the bullying.  I don't know how many nights I sit holding him while he cried because someone used this word viciously towards him.  To this day when I hear someone use this word I can’t stay quiet.  I have heard all of the excuses that it was OK to use:  I’m not using to be mean toward you so you need to relax; It’s in the dictionary you need to quit being so sensitive; and on and on.  

What that shows me is that people that use this word when they know it bothers you is to be mean, nasty or to cause you pain.  It shows to me they are entitled, insensitive and completely lacking any kind of kindness, empathy and should be avoided by any means. To find out how to be involved in Spread the word to End the word: http://www.r-word.org/r-word-resources.aspx

TAKE THE PLEDGE! I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.: http://www.r-word.org/r-word-pledge.aspx

Sunday, February 19, 2017

Miracle League for Ages 19+

Miracle League is starting a new league – it is for people with disabilities AGES 19 AND OVER!!!!  WHOO HOOOO!!!!!  They tried last year but it didn’t come together because they didn’t have enough coaches – so I hope that it comes together this year.  Sean LOVED playing in a league but wasn’t interested in playing for Special Olympics, unfortunately once he reached 19 years of age there wasn’t a place for him to play.  Another example of resources no longer available after graduating High School.
https://kiwanismiracleleague.sportngin.com/register/form/840926527

 The first game is Saturday, May 6th.  Please visit their web page

Register


In the Miracle League, everyone bats, everyone scores and every game ends in a tie. The Miracle League Field address is 300 NW School St.
Youth Miracle League
All kids ages 5-18 with special needs are eligible to play in this coed, non-competitive baseball league.
Adult Miracle LeagueMen and women, 19 years and older with special needs, are eligible to play. Games will be played after the youth league on Saturdays.
Miracle League
    • Game consists of two innings
    • Every player bats once each inning
    • All players are safe on the bases
    • Every player scores a run before the inning is over (last one up gets a home run)
    • All games end in a tie
    • Community volunteers serve as Angels in the Outfield to assist the players
    • Volunteer PA announcers for each game
2017 Spring Season: May 6 – June 17 (No games on May 27)
Registration Deadline: April 12
2017 Fall Season: Aug. 19 – Sept. 30 (No games on Sept. 2)
Registration Deadline: Aug. 2
There is no fee to participate in the program. Register online or at the Parks & Recreation office, located in the Public Services Building at 220 W. First St. in Ankeny.
Register online now:
Volunteers Needed
Volunteer coaches and Angels in the Outfield (volunteers) are needed for these teams. Volunteers are partnered with players to assist them in the game. Angels must be at least 14 years old. School sports teams, cheer/dance squads, and youth groups are encouraged to volunteer as a team. Volunteer now.
For more information, please contact Ryan Penning with Ankeny Parks & Recreation at 515-963-3574 or rpenning@ankenyiowa.gov.

Today’s No Ordinary Day: Celebrate Sean’s Birthday


On February 24, 2017 we will be celebrating Sean’s Birthday; he would have been 38 years old.  

With some tears and reminiscing of the happy times we will be celebrating that we had Sean from 02/24/1979 to 11/10/2013.  I thought you might like to see Sean in some of our favorite times of his birthday!  

Sean’s go to phrase for days that were important to him on his daily call to me was “TODAY’S NO ORDINARY DAY” – Make sure you make the 24th “No Ordinary Day” in memory of Sean.

This video below shows how Sean lived his life and has a lot of our favorite “Seanerisms”.





Sunday, February 12, 2017

Introduction to How We Got Started

If you will bear with me I thought that giving you a bit of background of the main players in getting the foundation started would help:

Me:       Mom; I was blessed by God to have Sean guide me through life for 34 years.  He was my hero and my rock.  He showed me what true faith in God was, what true strength in overcoming obstacles was and he made me a better person.  He was my reason for living and was the greatest gift any Mom could have - Thank You God for the gift of being Sean's Mom. I love him more than I have ever loved anyone even today; 3 years after his passing.  That is why this foundation is so important to me, to continue Sean's legacy.

Bill:       Dad; Bill came into our lives when Sean was 13 years old.  His first meeting gave him a reason to run the other way.  Bill was coming over for dinner and I was fighting with Sean to get his clothes on as I am trying to cook dinner and he was SO excited that he couldn't stay focused (I know that is hard to believe - right?)  Bill knocked at the door and all of a sudden I saw Sean out of the corner of my eye run across the room and throw open the door and jump into his arms with a big Seaner hug....wearing nothing by his underwear!!! Even THAT didn't deter the two from becoming fast friends and Seaner loving him "to the moon and back". He was the best thing that could happen to us and blessed that he took us both on as family.  My favorite memory was when someone called Bill his father and Sean got quite upset and said NO – My Bill is NOT my father he is MY DAD and that is a whole lot better than a father, Bill makes time for me.  Sean was SO proud to introduce "My Dad, the fireman" to his friends and loved that Bill wanted to be a part of every aspect of his life AND that he talked Mom out of punishing him sometime. 

Jacob: Brother Jacob is what Sean called him. He was Sean’s “best friend in the whole wide world” that he met at LivingWaters Fellowship. Jacob became his “Little Brother” (even though he was 12” taller than Sean) because when I told Jacob the story that Sean always wanted a brother and how he asked for a baby brother every birthday and Christmas, but it wasn’t in God’s plan for me. So on Sean’s 32nd Birthday Jacob came to Seaner’s birthday party with a bow on his head and a sign on his chest – Happy Birthday Sean I am your new little brother! On the way home Seaner was so excited by the party but when I asked him his favorite present he said “Mom, I got my heart’s desire! I got a little brother” this is the bestest birthday ever! From that point forward Jacob had Sean’s unending love and devotion.

Kara:     Miss Kara came into Sean’s life 10 years ago when I started working with her and explained to her that you didn’t “meet” Sean you “experienced” him.  She couldn’t wait to meet him and when they met; Sean was completely smitten and they were friends from the moment they met.  When he found out that Kara was getting married he kept asking for “a flower” to wear at the wedding and Kara graciously let him have a flower and he was even part of the wedding party by being  “in charge of smiles”.  Seaner loved her so much he even proposed marriage right before she was ready to walk down the aisle – and in true Kara form she smiled, she let him down gently and he walked away a happy boy and Kara knew that she had the love of Sean for the rest of his life and after.

Josh:     Joshdawg is the preaching minister at Sean’s Church, LivingWaters Fellowship, yes in Seaner’s world it was “his church”.  Josh has created an inclusive and accepting environment at his church and he made certain that Sean was an integral part of church.  Bill and I went to this church a few times before we had Sean attend and after the first time he attended LivingWaters he looked at me and said I want to keep coming here; when I asked him why he looked at me with those beautiful HUGE eyes of his and said “Mom, can’t you feel it?  God’s Here! and Josh likes me and my friend Mark comes here”.  How can a mom say no to that?


Maria:           Auntie Maria was Seaner’s second “mom”; a true friend since we came into Bill’s life.  Auntie Maria and her family have always been there to help when we needed it; she helped me when Sean was in the hospital and even took on a lab tech because they tried to keep me out of the room when they were going to run tests on Sean (one of my most treasured memories).  She was the one person that Seaner “wouldn’t share” with ANYONE!  When we would go out to dinner together I couldn’t even sit beside her – his preference was the wall was on one side of her and he was on the other so he could have her “undivided” attention.  If someone had to sit on the other side of her – it had to be her husband. J  I was relegated to only sitting across the table from her.  He would always say “Auntie Maria is my most favoritist person in the whole wide world”.  And why not - She would take him to the Best Buy in Ames because "it was better than the ones in Des Moines"!  He loved her more than anyone can imagine and I didn't love her the same I might have been jealous.

Monday, February 6, 2017

Congenital Heart Defect Month

Many of you know that Sean was born with a “Congenital Heart Defect” (3 actually): Atrial Septal Defect, Ventricular Septal Defect and Pulmonary Stenosis.  After several surgeries he lived a wonderful life but at 34 his wonderful and beautiful heart simply couldn’t beat any more.  

My favorite Sean story was when someone made fun of the scar on his chest and his reply was "That is my LOVE MARK - Mom loved me so much she made sure my heart worked, don't you wish you had done?"  

We were blessed to have him as long as we did and we encourage all of you to recognize the Congenital Heart Defect Month by giving a smile to a stranger; it won’t heal a heart but it will certainly help someone’s heart feel better with/without a defect.