"Everyone needs a place to call their own"

Thursday, September 30, 2010


Well I am another year older, not much has changed this past year.  26 had it's ups and downs, I had some hard times and some great times.  But through it all I know-I have so much to be thankful for in my life....

  • A loving husband and family 
  • A beautiful little girl who is my very own miracle
  • A Roof over my head among so many other of life's necessities
  • Great friends who are always there for me
I am so excited to see what this new year of my life will bring...here's to you 27!

Tuesday, September 28, 2010

A Child's Paradise

I have started to go to MOPS recently.  I have so much fun and really enjoy the time with the other ladies.  In turn Ayla gets to play in this amazing facility for 3 hours twice a month.  She is always leery about going to children's church or other things similar to that but she LOVES this place!!  She's been twice and when I pick her up she's always hiding from me!!

Upon exiting the kids have a choice of walking down with parents or sliding down an enormous slide just for them.  Ayla wanted to slide multiple times today when we left.

I have always been skeptical about letting Ayla participate in these kind of group play dates inside, because of the germs and CF.. But since she's gotten a little older and I know she's not going to put any little thing in her mouth I feel more confident.  I'm even considering letting her go to a one day a week program at this church.
When she asked to go "Like all the other kids" my heart melted....why should I let CF keep her from this?  I'll just leave it up to prayer and good judgement!

We will see how it goes during COLD SEASON (EEK!!) I'm sure I'll set something up with the coordinators to call me if there is a sick child in her class and I'll remove her for that day.

But if you know Ayla....you know she is SO-CIAL!!! And I really think she needs this and apparently she agrees!


Monday, September 27, 2010

Do you have "Attractive" Genes?

I was watching a television series on Showtime today.  During the series this woman was distraught over the fact that her husband had left her and she desperately wanted more children.  She was looking for another man to "help" her have another baby and began asking him a series of questions about his family history....."do you have any history of....." Celiac Disease, Heart Disease, and she spouted off a few other common problems....but last she said...Cystic Fibrosis.
I guess if the man would have said yes to any of those she would have rescinded her offer.  Anytime I hear about Cystic Fibrosis in the media especially on television when it's not for awareness purposes I always feel like it's in a negative light.
Like that woman wouldn't have wanted a child with Cystic Fibrosis.  Now I know this is all fictional in this case but there are people out there who really feel this way.  And I suppose there is nothing wrong with everyone having an opinion, but I take offense when I have a child with Cystic Fibrosis and others imply that they would just assume not pro-create if CF was a possibility.
I know that for some Cyster's or families of carriers they chose not to have children.  But for me and my family we are walking on the path that was set out for us.  And Cystic Fibrosis is part of the foundation.  Of course if we could have we would have prevented Ayla having CF.  But the truth is we can't.  But we don't want CF or any other "genetic" trait to prevent our family from going where it needs to go.  I don't want CF to prevent Ayla from having a sibling.
I guess this really hit a nerve with me today...I felt so offended when the woman in this tv show said that.   Those people who have kids with special needs or have special needs themselves can't possibly make others understand how it is to live life.
We all know it sucks to have CF, it sucks to be a carrier of CF....But it sucks even worse to be a parent of a child with CF and have the media display the disease in this way..Like it's a choice...you can't genetically design your children to be what you want them to be.  And CF is not a removable part of our lives.  Without CF we wouldn't have Ayla....without Ayla we wouldn't have CF, they are a package that come hand in hand.
This post may not portray the way everyone dealing with CF feels but it's how I feel and I felt I had to speak my mind.
I wonder how it makes other CF families feel when they see CF in the media,being portrayed in a negative way?


Friday, September 24, 2010

My house is suffering most from my COLD....

This is a picture of part of my living room.  I picked this space to show you because it's the cleanest...It's pretty sad...I am hoping for new found energy when I rise tomorrow morning..and the desire to clean the crap out of this place!!
Let's just say this cold needs to get gone!!

Thursday, September 23, 2010

I'm Still here....

This is the sick little girl......still a cutie pie..

Well, things have been crazy busy lately.  We have been moving, traveling, and now we are sick!  I took Ayla to the Dr. today to get this cold checked out.  We don't live near our CF center so I take her to Pediatrician and when needed make the trip.  So hopefully this cold will be gone soon.

We have our next GI and Cf clinics October 13 @ UF.  Her Dr. said today that she is in the 50th% for height and weight!  Considering all she's been through-he was very impressed!  He said that if her growth continues this trend she will be 5.4' and 128 lb's....I just smile when I think of those numbers...hard to believe she will grow into a woman only 2 feet 2 inches from now...shes 3 feet 2 inches right now..tall?  I think so!!

She's doing well, we are working on getting her into a Mother's Day out program at a local church for social interaction and more activity one day a week.  Hopefully that works out soon, I go to MOPS at this church and she had an amazing time during her "playtime."

School is going ok......we have been so busy lately that we haven't had many "formal" lessons...or what I would consider a "lesson" but we have been trying to notice the world around us...talk about things and read books!!  I'm going to try to get better at it...but isn't that what school should be at this age??? Playtime!!

So....that's about all that's going on with us...my sister over at the Gifford Blog is about to POP with her 3rd boy Cohen Miles....we can't wait to meet him! I'm sad I will not be there for his birth...I have been there for her other children's birthdays...but not this one... BOO

That's the update...I will try to get these done more often...no promises though ;0)


Monday, September 6, 2010

School's In!

Tomorrow we are starting SCHOOL!!! 

Home-School that is!! Ayla has been asking and asking "When am I gonna start school?"  With the move our first day of school was postponed a bit!  She's been so excited-it's so cute!

Our first week's lesson is based around the book: "Jessie Bear: What Will You Wear?" I have gotten some helpful ideas from BFIAR & other mom's and came up with some fun activities to go with this book.
  • I've printed out a paper doll (bear) with little clothes that she can color and and dress her "Jessie-Bear"
  • In the book the parent's show love to Jessie-Bear in different ways, we are going to practice showing love to one another
  • Jessie-Bear also keeps his room tidy and toys put away when he goes to sleep at night...we are going to mention that too.. LOL
  • We're going to eat Teddy Grahams for snack
  • Ayla's going to practice picking out clothes for the day (maybe they will match??)
  • We're going to work on our bible verse for the week (very short and goes along with our theme)
That's just a few of the fun things were going to try throughout the week!  But it's mostly going to be enjoying the books and doing an activity (if she wants),playing outside and trying to point things out that she can associate with the book.

Mommy's excited!!!

I'll let you know how this week goes!!

And.....finally....The ROOM!!
Craigslist $75
My Desk Craigslist 60$ painted by me, chair yard sale 15$
Ayla's Desk Craigslist $20
Bookshelf Antique (painting Green) Easel: Amazon $40
One last look-complete with Ayla and her bed-head!!

Let the Fun Begin!!!