Monday, September 24, 2012

Pasco County Young Althletes Program

Special Olympics and the Young Athletes program for Pasco county started last week.  This program is for children 2-7 - both special needs and "typical."  Finn and Camila had so much fun doing last spring.  The program runs for about 2 months, is free and you don't have to feel obligated to go every week.

The kids work on basic skills such as kicking, throwing, catching, jumping, etc.  The ladies that organize it are wonderful.

Please consider attending even if your child is not "special needs."  It is a great way for typical children to learn about volunteering and they will have a blast too.  There was such a great mix of kids last time around.



Its at Seven Springs Middle School on Wednesday evenings - 5:30 - 6:15.  Hope to see you there!

Wednesday, September 12, 2012

Angel Tommy


I can't say I know Luan well.  I've never even talked to her in person.  I met Luan on the Chromosome 9 support group. I know she lives in England.  I know she just went through something that no mother ever wants to go through.   

Luan first joined the support group when she found out the baby she was carrying had Trisomy 9 (like Finn).  The doctors and nurses were encouraging her to abort the baby without actually saying "abort the baby."  Luan did not abort the baby and remained positive while getting attitude from doctors.  She gave her baby a safe, warm place to develop.  Luan frequently posted updates on the support group message board.  All of the moms of children like hers from across the globe gave her unconditional support.  They shared postive messages about how their own children have overcome obstacles.  I think we all felt we were with her on her journey - I know I did.

On Monday, Luan gave birth to Tommy, a little boy that looked so much like Finn, and shortly after, he passed on. We all understood the odds that the doctors gave Luan for the baby's survival, but we all hoped they were wrong.  Doctors have been wrong so many times with Finn that I didn't even consider the possibility that they would be right in Luan and Tommy's case. 


Luan is an amazing mom.  She gave birth to a beautiful boy that forever changed her life and all of ours on the support group website.

Thank you, Luan for joining the support group.  I hope you continue to keep in touch with us and know that many people will always remember you and Tommy.

Wednesday, September 5, 2012

Feeling left out...

I wonder what goes through Finn's head all of the time.  He cannot tell me about his day.  He cannot tell me what he wants to do tomorrow.  He cannot tell us if he had a bad dream or if his stomach hurts.  Finn is smart enough to know that he is different and I wonder if he feels left out - even at home with just his sister and parents.  He cannot run around quite like she does.  He does not recognize and point to all of the shapes on the "shape"poster like she does.  BUT he tries so hard.  Every once in awhile I catch a look in his eyes that says it all. 

Its heart breaking, but this isn't the left out feeling I'm talking about.  I'm talking about the one that Dan and I have.  The feeling that we are left out of what is going on in Finn's head, what he feels and what he wants us to know.  And there is another kind of feeling left out...sometimes we just don't get to do what other parents get to do. We can't always make it to parties or get-togethers and when we do, they often are not enjoyable because the time is spent making sure sweet Finn doesn't eat something he shouldn't or run away or break something breakable.  We don't experience extra-curricular activities like tennis, t-ball and soccer the way other parents get to.  We don't get to take the trips we would love to take with the children.  And even though I know we are blessed in so many ways; sometimes it just plain old sucks and I want to throw to throw myself on the floor kicking and screaming. 
 
Life certainly changes with any child entering the family.  Your time is now their time and you have to make an effort to have alone time, friend time and husband/wife time.  But sometimes, as a parent with a child that has special needs, you feel handcuffed to those needs.  You wonder if things will get easier as your child gets older or if they will get harder as your child faces a whole new world of challenges.