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!

Where We've Been

It's been a long time since I wrote, but we've been BUSY!!!!

We've been to....

AMC Convention

Which was at Disney World!

To school, Back to see Dr. A (who said we are doing GREAT), To Shriner's (who said we are doing GREAT)!

All has been good on the home front! Jackson has excelled soooo much in school! He is feeding himself, walking much better in his walker and writing!!! We are so proud of how far he's come! Tomorrow, we embark on his first field trip and I couldn't be more excited! This weekend, Jackson wants to be a bus driver for our annual Whole Foods Trick or Treat!

An Open Letter to all of You who Wore BLUE!

Good Evening All,

My heart is so full tonight. I would have never dreamed that 3 years ago, we would be celebrating the First Annual Arthrogryposis Awareness Day, wow! And the response we got today from all of you was something I could have never imagined. Today, as I watched my inbox fill with pictures from people my husband works with, many of them, who have never put eyes on our son---I was overcome with emotions. But, when I clicked on my Facebook account, it looked like Smurfs had exploded all over the screen. I have received pictures from high school friend's parents, people who watched me grow up, and so many others!

So, from the bottom of our hearts, to our co-workers, friends, family, and our "journey family" thank you for the support----by wearing blue today, you filled my heart and my soul and it means more to us, than you will ever know that you were touch by our "little bumblebee"

your so amazing and lots of love,

DJJ

P.S. enjoy!

Wear Blue Wednesday - AMC Awareness Day

If you wear blue, please send me a picture, I would like to include it in Jackson's scrapbook!

My Aha Moment

aha moment: survive and thrive.

This was so much fun!!!!

The House that Built ME

It's the title of a new song by Miranda Lambert and it speaks volumes to me as we prepare to move into our new house this week. While we are all very excited to be starting a new chapter and giving Jackson the freedom and accessibility our "old" house could never provide, this is a hard time for me for a number of reasons. First, I have a very hard time letting go---I cried when I sold my Ford Festiva! And secondly, this house holds so many memories for our journey with Jackson. This is the house my husband hand sanded the floors of his baby room in. This is the house I was pregnant in. This is the house where Jackson came home to. This is the house where he said his first word (mama), ate his first food (butternut squash), where I made all of his baby food, where he rolled for the first time, where we did OT & PT too many times to count, where he WALKED for the first time, where he fed himself for the first time, and where we all learned so many lessons. We close on our new house in just 3 days and as my hubby told me this morning "the new house will be the first one he runs in!"

It will be tough to leave, we take the memories, but this is the house that built him for the first 3 years of his life! And where I learned about being a mommy and a wife!

"We live by faith, not by sight"

Funny how things can catch you off guard sometimes! I am sitting here tonight, after researching Spinal Muscle Arthrophy until my eyes hurt last night just playing around and looking at shopping sites, when I ran across a necklace that said this very quote. Very funny, God! I needed that. I have faith that God led us on the path to TX Children's in our search for more answers for Jackson and our family and that He put us here today. I have faith that there is a reason there was an early opening at the MDA clinic. But sometimes, I question why, when I can't see a clear answer. Thanks, God---I needed that to remember to live by faith!

He is RISEN!!!

What a wonderful and fulfilling Easter we have had!!!! We began our Easter weekend with an Easter egg hunt at Healing Place Church. The place was AMAZING and God's presence was felt by our family! Jackson had a blast and to see the other children willing to give him their Easter eggs during the hunt did my heart wonders! HPC even provided hair cuts for mom's and I partook in it and have a new fabulous doo!!!! On Sunday, we got up and saw that the Easter bunny had made a stop to our house and then we went to Easter mass----it is always one of my favorites, but our 3 year old did not make it through the whole service----but it was beautiful none the less! We came home and had both our families over for boiled crawfish! It was a great time shared with our family, including our "adopted" family Kodi, Brad, and Braden! Everyone got a full belly and had a blast!!! Jackson played with everyone and was in bed by 8 and asleep by 8:05!!!! What an amazing God-filled Easter weekend!!!

whew!

Today we had another visit at Shriner's in Houston with Dr. G and we received news that I was pretty sure we would get today. For the past year, we have been stretching and working on getting Jackson to "functional" point with his upper extremities---we have stretched and work from the day he was born, but over this past year, we have had intense focus to try to get him to a point to put palm to palm. Everything we have done has been successful, but Dr. G (and us) feel like we have reached a point that surgery is the only way to get closer to independence, especially in the area of self-care for Jackson.

I won't say that this is a decision that makes me or Jon happy, but it is a decision we are (well, at least for me) slowly coming to terms with. It will be tough to send my almost 4 year old back to the surgery area, when he is old enough to know what is happening, but I know in my heart that this is what's best for him.

I also take comfort in knowing that what Dr. G said today is true; "we have done ALL we can to help Jackson, the therapies, the stretching, the e-stim, etc., but the only way to give him the external rotation and range of motion is to do this surgery."

So, it is with a lot on my heart and my mind that I tell you, we head back to Houston in September to re-evaluate and get a surgery date for the first arm osteotomy. The second arm will be done about 3 months following the first one. In the interim, please pray for peace about this decision for us and strength and courage for us and wisdom for our medical team.

xo,

DJJ

Growing Up

Wow---what a big boy Jackson has become! Ever since I went back to work, I have sat on the couch every night and held Jackson until he went to sleep, I do NOT regret one second of it, but now that he is a little over 3, I figured it was time to get him to go to bed on his own. Plus, I need some MomMe time! So, last Tuesday, we started getting ready for bed, drinking milk while reading a book and then putting him down in his bed fully awake. The way I convinced him to do it, was by setting a timer on my cell phone and letting him know that if it went off and he was still awake, I would come and get him. Well, the first few nights, he cried a little, but quickly went to sleep with his music on. Last night, he didn't make a peep, gave me and daddy kissies and headed to bed. Tonight, he gave me his milk cup and said "I ready"---kissed daddy and I put him in his bed after kisses and I love yous! And he went right to sleep. I am so proud of him! He is such a big boy!

Believe Dat

Three years ago today, I became a mommy. I can't believe it's been 3 years already, but wow, what a journey it has been. I still remember back to how scared I was the first time I laid eyes on Jackson and the meltdown I had with my mom on the phone outside the NICU because I couldn't figure out how to change Jackson's diaper and never thought I would learn. Over the past 3 years, I have learned to put on diapers, care for cast, change braces, modify braces, fight for everything and advocate for my amazing miracle! Today, my bumblebee flies, he is fully potty trained (day & night), in school 4 days a week with the necessary supports and fully included, walks in a gait trainer and is the smartest little thing I have ever met!

I would be remised to write this post and not acknowledge those who have been with us on this journey. First and foremost our family, including those who are not our family by blood, but by circumstances and most importantly by love---our AMC family. Without y'all, I would have no one to ask all the "silly" questions to like, "how do you wipe your own butt?, how do you eat?, how did you learn to drink from a regular cup?" You have been the brightest spot for our family over the past 3 years, what an amazing bunch of women, men and kiddos y'all are! Secondly, to those who share our days with in preschool, these kids took to Jackson and they are his buddies and girlfriends---they make me so proud! Another huge part of preschool and Jackson's success there has been "Stephi, Wephi"----she helps Jackson be included and he absolutely LOVES her, even when he's tough on her!

Three years ago today, I not only became a mommy, I also became a different person, with a different life and I wouldn't change one moment---What a great 3 years it's been and I can't wait to see what the next year holds for us....

much love (& who dat!),

the heckerts

Almost 3

I can't believe that in less than a week, my little bumblebee will be 3. Today, we had his first IEP meeting and we accomplished a lot----got everything we wanted, including being able to ask another parish to provide him services, since he is in a classroom setting in that parish. Wow! How far we have all come!? I never thought I would be so dang tough, but Jackson made me a better person and pretty dang good advocate. This weekend will be crazy and fun....we are having a birthday party, with quite a few kids from his class coming...I think I am more excited than he is!!!! Cakes to make and food to make....

More questions than answers

What an emotionally and physically tiring day! We went to see a neurologist at Texas Children's today, upon the recommendation of Dr. Hall. We wait for 6 months for this appointment and we feel like we got a lot out of today. But as we are finding our more and more with Jackson, we got more questions and not a lot more answers. Dr. Rodriguez is an amazing doctor and I can tell you I admire her and believe she will be a great guide as we continue this journey.

So what did she say, well, here it goes. She believes that Jackson possibly has Spinal Muscle Atrophy (SMA)----let me warn you before you go goggling, if this is a true diagnosis for Jackson, he does NOT have one of the more severe forms----that being said, he would still be diagnosised as having AMC, it just happens to also fall under the Muscular Dystrophy umbrella too. That could mean a number of things, some I know and others I still don't, but the good news for us is that there is another mommy to an AMCer, who also has SMA, so she and I will talk soon.

So for now, Dr. Rodriguez is ordering a MRI on Jackson's brain and spine to see if she can see any changes from the originals in the NICU and see if there was possibly any stroke(s) in utero. She has also referred us to a Physical Medicine doctor at TXCH and to the MD clinic there. All of these things will take time and we may not get into the MD clinic for 6 months - a year. Once we go there, we may have a blood test to check for SMA, nerve conductivity test, and/or EMG test. All these things together will give us a clearer picture of what the future may or may not hold. But for the most part none of this will change our plan of treatment or therapies.

One of the highest points of today was Dr. Rodriguez said "Keep doing what you are doing, it's working". So we keep chugging along on this journey with our little mystery miracle.

You are my....

Saw this on someone else's blog and I absolutely adore it....

You are my I love you
by Maryann K. Cusimano
Philomel Books, 2001



I am your parent;
you are my child.
I am your quiet place;
you are my wild.

I am your calm face;
you are my giggle.
I am your wait;
you are my wiggle.

I am your carriage ride;
you are my king.
I am your push;
you are my swing.

I am your audience;
you are my clown.
I am your London Bridge;
you are my falling down.

I am your carrot sticks;
you are my licorice.
I am your dandelion;
you are my first wish.

I am your water wings;
you are my deep.
I am your open arms;
you are my running leap.

I am your way home;
you are my new path.
I am your dry towel;
you are my wet bath.

I am your dinner;
you are my chocolate cake.
I am your bedtime;
you are my wide awake. (ain't that the truth)

I am your finish line;
you are my race.
I am your praying hands;
you are my saying grace.

I am your favorite book;
you are my new lines.
I am your night-light;
you are my starshine.

I am your lullaby;
you are my peekaboo.
I am your goodnight kiss;
you are my I love you.

I never knew....

There are a many things I never knew until I had a child, especially one who is differently abled, most of the things I have learned along the way are happy things, like sheer joy and a love like I never knew before. But today, I learned something I thought I knew before, but really didn't. Today, I learned what a true broken heart felt like.

When I went to pick Jackson up from school, his teacher told me he was sad at recess, when she took him aside and asked him if he was sad, he responded "yes". She asked him why he was sad, to which he responded "Because I want to play like the other kids"---meaning he wanted to climb and run with his peers. Right then and there, my heart smashed into a million pieces, I was so sad and taken aback, I thought we had a couple of years before we enter this phase---guess I was wrong. But I am eternally grateful for his teacher, who helped to glue parts of my heart back together when she told me that she took him and helped him climb with the other kiddos. It's nice to know that she knows the importance, not only to Jackson but to his mommy!

My heart is still broken, but not my spirit and neither seem to be bothering Jackson, he has been his rough and tumble self all evening. I know in the end, it will all be fine and Jackson will continue to amaze me and all those around us.