We are Moving....

No not to a new house again! But we are moving our blog to Wordpress....one huge reason is that I want to be able to update from my phone, a feature not easily available on Blogger. Please visit us at www.bumblebeesdofly.wordpress.com

Love!

I'm the Mommy to a Miracle

Good Morning Y'all!

I can't believe that it is the 2nd Annual Arthrogryposis Multiplex Cogenita Awareness Day! On this day, I want to share with you why wearing blue matters!

You may think that donning a blue shirt, blue polish or even a blue wig are not a big deal, but trust me they are!!! When I see pictures of all our family and friends, I am reminded of how many lives our Jackson has touched! I work with lots of families that are touched by MANY disabilities, like Autism, Developmental Delay and a host of others! However, when I turn on the news or read the paper, there is likely a story about Autism or childhood cancer and they matter, but until 5 years ago, I had NEVER heard of AMC and trust me, it matters too!

The mortality rate for AMC has been quoted by many professionals as 50% in utero! 50%! So today, when you put on your blue, please remember those AMC Angels and those of us who have our babies here. Everyday, I get to wake up to a miracle! Thank you for loving him and us!

A Sacrifice....

This morning on the radio, I heard the story of David Roth, father to Michael Roth, pitcher for the University of South Carolina's baseball team. David wanted to see his son play in the College World Series, which he missed last year because of work. He was determined to see his son play this year and when basically faced with a boss who told him he had no vacation time left, so he couldn't go to Omaha, Michael quit his job! You can check out the whole story here.

This story hit very close to home for me. You see, Michael was faced with the same ultimatum many parents of kiddos with special needs or dif-abilities face daily. We don't have to make a choice whether to see our kids play baseball, but we do have make the choice of caring for our kids, which means therapies, doctor's appointments, brace fittings, etc or go to work. Almost 4 years ago, I was in fact basically told to choose my job or my Jackson; that was a simple one! I did and will ALWAYS choose my child (and my family).

I'm am thankful to have a flexible job now, but in the work I do, I can't tell you how many parents and/or caregivers I speak to who have to make a choice to quit their job and care for their child to only be told they still don't qualify for services!

Bright Green Straps

I know it's been a long time since I posted, but we have been super busy.

Today, we went to pick up Jackson's new braces and when we asked him what color straps he wanted, he picked the loudest color in the place and it was of course a shade of green! When we found out about Jackson's AMC in utero and over the last 4 years one of the prayers I have found myself praying most often is "Please God, let this child be "well adjusted"! I wasn't sure what that meant and some days I still not sure I do, but I knew that it meant that Jackson would be comfortable with who he was and with the way God made him. And I continue to pray that he keeps that "Give the brightest straps, if I gotta wear braces, I'm gonna make them cool" attitude! Along the same lines, when we did his IEP this year, in the section where they describe the child, Jackson was described as "comfortable in his own skin". I was such a proud mama then and am even prouder with those lime green straps now!

Thanks for checking in on us!

XO

Happy Birthday, Baby

Today our baby boy turned 4 and today that little miracle said the Pledge over the loud speaker for the whole school and walked down the hall by HIMSELF! I am so proud of how far we've come!

But I am even more touched by how many lives he has touched and continues to touch! Today, my phone couldn't keep up with all the birthday wishes he got on my Facebook! Today at therapy, 2 women, who we have never met, in the waiting area saw his birthday crown and went across town to get him ice cream at the Baskin Robbins! I love that kid's charisma and his spirit! That was a huge prayer of ours from the beginning and continues to this day! He is so blessed and such a blessing!

So, on this 4th year, here's to you baby boy!

P.S. If you want to see pictures, they are on my Facebook!

4 years

Four years ago tomorrow, I gave birth to an amazing miracle named Jackson, as we embark on this day, I am an emotional mess! I know how far we've come and I dream of how far we'll go!

Four years ago, we didn't know what the future held. We didn't know if Jackson would breath or eat on your own. As hard as it is to admit, we honestly didn't know if our baby would live, we were told in utero that there was a possibility that he/she had Trisomy 18. One doctor even told us we'd be lucky if he ever got out of your crib. Boy, were they WRONG! To date, he's not only got out of that crib, but you got every where he wanted and then some. He's rolled, scooted and WALKED every where he wanted!

He has taught me more in 4 years in all I learned in the 26 before him! Jackson taught me patience, I never had before. He taught me to be a better wife, a better mother and a better Christian than I ever could have been without him! And most importantly, Jackson taught me to believe that anything is possible with love and prayers!

In 4 years, I have become a mom, a physical therapist, an occupational therapy, a cheerleader, a DME representative, a teacher, an advocate and so much more than I would've ever been! Jon has become a father, a DME repairman, an inventor and my biggest supporter!

Tomorrow, that beautiful miracle that was born at 8:17 a.m. will say the Pledge of Allegiance over the loud speaker for the entire school, in which he is fully included and will WALK all the halls there wearing a crown and I couldn't be prouder!

As we look back over the past 4 years, I wouldn't change a thing about the life. It's a crazy life, but it's our life! We've learned to dance in the rain and if you think our hands are full, you should see our hearts!

Happy Birthday Baby Boy----We LOVE you! Keep flying my beautiful bumblebee!

Love,

Mommy and Daddy!