Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Wednesday, May 6, 2015

Birthdays, Donor and MPS Awareness Day

Birthdays - Some big ones coming up.  First would have been my Dad's 75th on May 8th.  The year of "firsts" is always hard and this will be no exception.    I made this for Dad when I was in 5th grade.  There were typically school projects for "Mother's Day" and it was convenient that my Dad's Birthday was always the same weekend so I could modify the projects for my Dad's Birthday. (My dad and Aggie didn't marry until I was in 7th grade).  It's hard to read but it say's,
 I Love You Because...

Family Leader
A nice guy
Tough and Always Working
Hoping we will be right
Eager to get the job done
Really interested in what we do

I might not have been a poet at 10 years old but it was pretty accurate.  Still don't believe that he is not here with us to celebrate this milestone birthday....
Speaking of which, my Grandma is turning 100 on May 19th.  We are flying home to surprise her.  It's about the only thing a 100 year old would want on her birthday.  Aggie and my Dad threw her a big party last year just in case she didn't make it to 100.  We never expected it was because my dad wouldn't make it.  My Grandpa's Birthday is on May 9th, though he has been gone for 21 years now.  I think Grandma is really looking forward to the day that they can celebrate their May birthday's together again. And to be honest I hope they are together for it next year.  Not because I don't want my Grandmother here but when you have lost everyone in your immediate family, and you're 100, the days must tick by so slowly. 

On April 1st, almost exactly 2 years after we received Coleson's Diagnosis (April 2nd, 2013), I received his marrow Donor's contact information.  It was the day I had been waiting for since July 24th, 2013.  I was finally able to thank the man who gave my son a new opportunity at life.  His name is Jacob and he's from Wisconsin.  Coincidentally, Coleson's middle name is J.  Just "J."  Originally it was for John (my Dad) and Joyce (Paul's mom) but I can't help but think there was another reason for naming him just "J."  He seems to be a good guy (being a donor take's a special person) with a lovely family full of boys(3). He responded back to me that he felt a special connection as one of his own is Coleson's age.  I hope to thank him in person some day.   

International MPS Awareness Day is on May 15.  Wear purple to spread awareness and help make a difference in the life of a child with MPS or related disease! If anyone is interested in Donating to the National MPS Society, to help find a cure for my son and others with this illness, here is the link:  http://mpssociety.org/

We are making our annual summer trip plans including our week long tour of the Twin Cities Children's Hospitals.  I think we have to go to 4 different ones to see all of his specialists. He may have his heart surgery while we are there and hopefully we will hear that he will not require any other surgeries in the short term. We are also excited to help host the 2nd annual RMH dinner with the help of my Minneapolis based coworkers! On July 24th again as luck would have it!

We held a Kentucky Derby/Fight Night celebration at the Ranch over the weekend.  My dad's truck proved to be one of the more entertaining "toys" to play on.  I think my Dad would be happy that it is bringing so much joy to my husband and my kids! (Which in turn, makes me happy).

 Another bit of bright news in April was that I received a promotion at work.  My new title is Director of Contracts Technical Solutions!  I am so thankful to work for such a great company and a great function and a great team.  I need to finish building out my staff but then hope that to make some significant and exciting achievements.