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.

A Promise Kept

Today a promise made was a promise kept. Jackson ran after Dr. Accousti in his walker. It was one of the proudest moments thus far on this journey! And from the look on Dr. Accousti's face, it was a pretty proud moment in his life too. We are so fortunate to have a doctor who believes bumblebees can fly to---in their own way and in their own time, but they fly. What a great day!!!!

A Promise Made

Ever since we started going to New Orleans to Children's Hospital when Jackson was just a month old, I have told Jackson and his medical team there, including Dr. Accousti, that on the day that Jackson could walk, I would let him chase them down the hall. I told him this every time they cast his feet, every time time they stretched him and every time we made the trip. I knew that one day he would chase them down the hall and tomorrow he WILL!!!! I told him tonight while getting him ready for bed that I would let him chase Dr. Accousti and the cast team down the hall, it was a promise I made to him long ago. And Jackson told me he was going to chase them fast, "like a helicopter". I can't wait to see it and in the words of Jon, I will probably stand in the hall and cry like a baby, but I don't care---my bumblebee just keeps flying!

When Life Hands You Lemons...

I recently received this award from a parent of another beautiful little girl with Arthrogryposis (http://addymills.blogspot.com/). The lemonade award is to honor those people who show great attitude or gratitude, hence "When life gives you lemons, make lemonade."

This award comes with rules and here they are:

1. Put the Lemonade logo on your blog or within your post.
2. Nominate at least 10 blogs with great attitude or gratitude.
3. Link the nominees within your post.
4. Let the nominees know they have received this award by commenting on their blog.
5. Share the love and link to the person from whom you received this award.

Here are the nominees:

1. http://baby-braden.blogspot.com/
2. http://oliversmiracle.wordpress.com/
3. http://fortheloveofdani.wordpress.com/
4. http://donnamurray.blogspot.com/
5. http://rudderfamily.blogspot.com/
6. http://fromthetrenchesofadoption.blogspot.com/
7. http://forabby.com/
8. http://babystoffer.aboutmybaby.com/ (Adison)
9. http://daddymurad.blogspot.com/
10. http://www.theresalucas.com/

Take a minute and check out these awesome kiddos and adults, each and everyone of them have changed our lives!

xo,

djj

Update from our trip to Houston

Two weeks ago, we took a trip to Houston for a regular appointment with Dr. G, our uppers doctor. When planning for this trip, we had talked with Dr. Hall, who also wanted us to see a geneticist, so we found Dr. P at Texas Children's. We were able to schedule them on the same day and went down few days early to spend time with my sister, Cathy. It was a wonderful weekend and I can't even begin to tell you how much I enjoyed hanging out with my sister and watching Jackson play with his "Cappy", as he affectionally called her! And Jackson even got to meet his great uncle Sam and his great grandmother.

Dr. P is an amazing and through doctor, who is very interested in Jackson. She met with us for over 2 hours and did extensive visual examinations of all of us. During our appointment, she asked me questions, I have been asked several times, "why do you want to know and why are you interested in this information?" These are two questions I have "struggled" with ever since Jackson was diagnosed. I've said it before, the whys don't matter, they won't change how much we love Jackson, how much we advocate for him or anything else. But the whys do matter as a mother, as his mom, I deserve to know why this happened, will it happen again and for him the whys matter because some day he may want children of his own. Dr. P also asked another question I have heard a million times over, "do you want more children?" The short answer to that question is yes. But the more complex answer deals with the whys. If the doctors and testing could guarantee without question that Jackson's Arthrogryposis is not genetic and there is the 1 in 10000 chance that we will have another child with Arthrogryposis, then sure we would have another child, but if the answer is as we suspect, not so cut and dry or if the cause is definitely genetic, then we will likely not have more children and will explore adoption. Would I have Jackson all over again? ABSOLUTELY!!! But it's not fair to any of us to go into a situation knowing it could be so much worse and that we might not be so blessed next time or to hinder Jackson or another child. We got our miracle and for that we are forever thankful!

Dr. P is running a genetic microarray test and it will hopefully give us more answers. Our appointment with Dr. G went well and she sent us home with some more stretching and will see us back in 6 months.

In other news, Jackson is back riding horses and we are getting set to participate in the International Acadian Festival Pageant again this weekend.

Thanks for checking in on us,

the heckerts

WOW---It's been a while

So I haven't posted in a while, but things have been crazy here. I got a double ear infection, which seems to be starting a trend of being annual, gosh I sure hope not! Jackson had what we believe is an allergic reaction to soy. And, Jon had a terrible reaction to sulfa drugs and ended up in the hospital for 2 days, but he's all better now. So, now you see why it's been so long!?

Tonight, I want to write about something I have only dreamed of for a very long time. About a month ago, my little miracle started school. I don't have a desire for my child to grow up too fast, but school has always been a milestone I hoped we would accomplish and on the first day, that little miracle WALKED to class and was FULLY INCLUDED.

Many of you know the struggles I faced with trying to find a place that would fully include Jackson with his peers. We heard all the logic about safety and accommodating his needs, we were offered "baby rooms", no access and many other irrational things along the way. But God always has a plan and out of the blue I found First Presbyterian in Baton Rouge. They were more than willing to take on a "challenge", invited us to see their facilities, see if what they had would work for us and if they could accommodate Jackson. We went toured, interviewed and fell promptly in LOVE. They offered us a full scholarship if we agreed to find a shadow and pay them. The search began and we found another God send in Nici, she loves Jackson and he loves her. She is a true angel on this Earth and we could not have asked for a better fit.

Jackson has been in school for about a month now and absolutely LOVES it. He has made friends, the kids are so accepting and melt my heart everyday, from climbing off a toy to sit on the floor and play with Jackson to climbing in the sand box to play with him---he's a ROCK STAR and the girls wait for him to walk to class with them! Just tonight he was telling me and Jon that "all the kids want to play with me!" He's learning his ABCs, numbers, months, prayers, etc., working on potty training, and being fully included with a little help. His teachers are AMAZING and everyone there loves and spoils him! It is a perfect fit!

This weekend, we leave for appointments in Houston, first a Texas Children's with a geneticist, which I am a little nervous about and then to Shriner's to see Dr. G----it will be a fun weekend as we will be staying with my (half) sister, I can't wait to just sit on the porch with her and a big glass of tea! Please pray for safe travels and valuable information from our medical team---I'll keep you posted.

All our love,

the heckerts

My "Other Family"

About 2 years ago and when Jackson was not even 6 months old, Jon and I loaded Jackson in the car and drove 6 hours to Dallas, Texas for the 2nd Annual Arthrogryposis Multiplex Cogenita Convention; it was our first meeting of many families I had talked to on the internet since Jackson's diagnosis in utero. Tomorrow, we will board a plane and head to the 4th Annual AMC Convention in Philadelphia, Pennsylvania. If you know me, you know I hate to fly, but I couldn't miss seeing my other family and the opportunity for Jackson to excel at something different---in the past 2 years at conventions, Jackson has learned to hit a ball with his head, throw a ball, straighten his right leg and drink from a sippy cup.

So, tomorrow, we will load our amazing 2 year old on a plane and head to what has become our annual trip to see all those who inspire us over and over again. I can't wait to see them and to see what Jackson learns this year. There will be tears shed, but there will be more happy than sad. 

Advocate Second Only to Mommy

This morning my dear friend Wendy (P.J.'s mom) sent me to read this on the Huff Po website. I was upset at best and words not appropriate for a family friendly blog at worst. After reading the editorial and several other post on Julia's site, I had to do something, so I wrote the following and sent to the Huffington Post:

To whom it may concern:

Let me start off by saying I am extremely pro-choice and a Christian. I have said it a million times over abortion was not the right choice for my family and our situation, but I do understand it is may be for others and their situations. This morning a very dear friend of mine sent me a link to the Huffington Posteditorial concerning the doctor who was killed over the weekend in Wichita, KS. But our story starts way before today. In September 2006, we went in for a routine 20 week ultrasound, in a whirlwind situation, we were sent to a perintologist.   He did the ultrasound and found that our baby (we did not want to know the sex) had clubbed hands, clubbed feet, and arms stuck in extension.  These along with many unknowns were presented to us. On that day, we were given a diagnosis of Distal Arthrogryposis. We were also told and I quote “Some parents choose to terminate”. My immediate response was “I do not.” While I would never judge another mother for making this decision, as I said before, it was not the right decision for me.

All this to say the choice that Julia made was indeed a very personal one and I will not hold that against her, but what I do take issue with is her justification for terminating and her description of Arthrogryposis.

Here is a little of our story:

 Jackson was born on February 8, 2007 at 8:14 a.m. via C-section, because he was breeched. When my O.B. came back, she asked them to have the neonatal team ready, as we knew that Jackson had been given a diagnosis of Distal Arthrogryposis (meaning he would have club foot and hands) and that sometimes children with Arthrogryposis can need a trache. So they proceeded with the section and when Jackson was born, they all yelled "It's A Boy!" I heard him screaming and that was all I needed! Well, they whisk him away and we don't see him again! This being my first section, I didn't think it was that much out of the ordinary. So they fix me all up and tell me that they are going to take me out to see Jackson. And we wait and wait until finally my nurse comes back in and tells us that Jackson has some tubes and wires, but they are helping him, then they roll me out to see him. What a shocker! We later learned that Jackson had to be "bagged" to help him breath, as he had swallowed amniotic fluid on the way out and possibly had some lung weakness. Shortly after his birth, Jackson was given a diagnosis of Amoplyasi, but now they are not sure that is correct---all we know is that he has a form of Arthrogryposis. But hearing those first cries, I knew our Jackson would be a fighter, always was and still is!

Arthrogryposis is not a death sentence; it is not a painful condition, there are no cramping that we have ever heard about from any doctor, therapist, or adult with the condition. Yes, those with the diagnosis are more likely to develop arthritis at an earlier age, but in and of itself, Arthrogryposis is NOT painful—all of the adults I have met will tell you that. They will say that therapies (physical, occupational, etc.) can be uncomfortable, but NOT PAINFUL. Julia states “He would never be able to walk or stand; never grasp anything, never be able to hold himself upright. He wouldn't even be able to suck his own thumb for comfort.” My son, Jackson is now 2 years old, to this day, he does not stand or walk, without assistance. When he was born, we were not sure if he would grasp things, today he does grasp, but cannot feed himself, and it took a very long time before he could hold himself upright. But I am here to tell you that he leads a very happy and fulfilled life. Our “normal” includes therapy 3-5 days a week, several trips to the doctors across 2 states, but it doesn’t mean that life is not worth living for him or for us.

Jackson’s life and living it with him has changed mine and my husband’s. One very bright light through all of the struggles we face everyday has been AMC Support, Inc. This non-profit organization runs a support group board at www.amcsupport.org. I found the site just a few hours after Jackson’s diagnosis inutero.  I found there, parents and grandparents whose lives were forever changed by their amazing miracles---their children and grandchildren with Arthrogryposis. I also met several adults with Arthrogryposis, they are simply some of the most outgoing, helpful, & open people I have ever met. And everyone we have met tells us, they would not change one thing about themselves and especially not take away their Arthrogryposis, because it makes them who they are!

In closing I will say that every day is not all rainbows and sunshine, there are days when it rains, but our lives, including Jackson’s, are nothing short of wonderful and beautiful. I have taken 2 pay cuts since Jackson’s birth, so that I could take him to therapies, doctors, etc. It is tough financially to raise a child, especially one who is differently-abled. Insurance is a battle, every new therapy is a battle, carrying around a 26 pound child who can’t hold on to you is a battle; but everyone of these battles make me a better mother, a better daughter, a better wife, a better friend and our family that much better. And I have done things I would have never done before Jackson and I have met people I would have never met---one of those people is my very dear friend who sent me this article. Do I want life to be “easier” for Jackson? Yes. Do I want him to walk NOW? Yes. Do I want him to feed himself efficiently? Heck, yeah. But would I ever change anything about him or my life since him? HECK NO!

25 Things

I have learned a lot in the past 2 years in this journey, here is the 25 things that I have learned and for all of them I am blessed and thankful:

1.  Just when you think you have hit your low, Jackson will brighten your day.

2.  A simple milestone means the world.

3.  Believing takes on a whole new meaning.

4.  There are people who are our “family” who we would have never known if not for Jackson.

5.  Every scoot, every roll and every step took a team effort and for that we are so proud.

6. Two year old “arguing” was never so pleasent to the ears.

7. Eating Cherrios is a life skill, not to be underminded by playing with household utensils.

8. It’s okay to stop and remember there is more in this world than the daily hussle and bustle.

9.  Digging in the cabinets is a welcome activity!

10. Things other kids get in trouble for are considered therapy.

11. We can and do negoiate with a 2 year old - “if you put on your braces and walk, you can have the chip”.

12. Doctors don’t always know best.

13. It’s okay to cry---happy tears, sad tears, tears of shear exhaustion----they all have a place in our lives.

14. Rolling around the house leads to many new obstacles.

15. Everything happens for a reason.

16. Eating dinner can bring smiles to our face.

17. 2 year olds are amazing comedians, especially when we need it the most.

18. Road trip takes on a whole new meaning.

19. Hero takes on a whole new meaning and no we are not heroes, we are just parents doing what other parents do, caring for our child.

20. Disability does not define a person.

21. Watching Jackson grow by how big his braces get everytime makes us smile.

22. I always wanted to be a teacher, now me and Jackson get to teach many aspiring doctors and therapist.

23. Every milestone REQUIRES a camera no matter how “mundane”.

24. Having Jackson has made me more of a fighter for what I believe.

25. I am a better person EVERYDAY because of Jackson.

We travel to New Orleans tomorrow, please pray for us in our travels and that we have a productive and uplifting trip.

Headed to Houston

With house renovations, starting a new job, and lots of things going on I haven't had a lot of time to post. I still need to get birthday pictures up and lots more. But for now, here is the latest update. We are heading to Houston for a second opinion on Jackson's lowers and for an evaluation on his uppers. We are going to Shriner's there, as they have an Arthrogryposis Clinic. We will see an OT, a PT, a neurologist, a geneticist, an uppers orthopedic and a lowers orthopedic. It will be a long day on Monday, we leave tomorrow, as our appointment is at 8:30 a.m. Please pray for us as we travel, a good day, and lots of knowledge and wisdom for our medical team there. I promise updates are coming, it has just been crazy here! 

xo,

the heckerts

Exciting News

I started my new job today---lots of details to follow, but suffice it to say I am in LOVE.

In other news---I wanted you to know about this publication I’m a part of called Serious.Life Magazine. They just published the February issue today, and I am in their Featured Blog Directory. It’s a very high quality magazine… you’ll really like it.

The magazine includes a lot of great content from bloggers you’ll appreciate, as well as great features, photos and other content. The magazine is owned and published by a family who have seven kids, three adopted and one who has Leukemia (www.riggsfamilyblog.com). The magazine gives away a bunch of ads to charities and ministries. Besides great articles on interesting people, there is a lot about family, adoption, personal finance, spiritual life, humor… all sorts of “life” topics.

Again, the subscription is free, and I know you’ll enjoy the magazine, so take a minute to check it out and sign up to get future issues. www.seriouslifemagazine.com

Happy Monday and details to follow about my new job.

xo,

Doris

Living on Tulsa Time

We spent a wonderful weekend with family. The first stop was to see one of the many who have become a very special part of our family in the journey ofthe past 2 years, Wendy and P.J. (a five year old AMCer) and Paul (her hubby and their younger son Patric); may not be related to us by blood, but the bond we share with them is inmesureable. I first met Wendy a little less than 2 years ago at the very first AMC Convention we attended, she was a"young" mom too and I identified with that and her son P.J. gave me and Jon so much hope for the future and what Jackson would accomplish. As long asI live I will never forget this:

On the Sunday (last day of convention), Jon had gone out to get the car, I was standing in the lobby with Jackson in his car seat in the stroller. I noticed a typically developing child running as P.J. ran behind them. When they reached the stairs, I thought to myself, how is the heck is P.J. going to get up those stairs, he can't pick up his feet like me. Well, before Icould get the thought completely out of my head, this little amazement hit his knees climb the stairs and took off running again. I cried and cried anda s soon as Jon came to pick us up all I could say was "Jackson will be fine".

Wendy and I chatted during that convention, but life was chaos for us then,between caring for Jackson, changing braces every three hours, pumping andf eeding, there wasn't much time to just hang out. By the time last year's convention rolled around in July, Jackson was doing so well, that we were bracing only at night and I (thank goodness) was done pumping, so there was a lot more time for hanging out and that is just what I did for two and a half wonderful days, when we weren't in sessions, I hung out with Wendy, we sat and talked for hours about our lives, our kids, anything we wanted(while my wonderful hubby hung out with the kiddos). Wendy and I had an instant bond, we left that convention with a new found friendship (and kinship) that will last a lifetime. We talked about it so many times in our numerous phone calls and text messages since July that we needed to visit each other and let our boys hang out. So when Jon asked about going to Oklahoma, I knewthat there was a stop we needed to make on the way---we had to see Wendy and the boys. So on Friday night after seeing Dr. Mathews (it's a story foranother post---but he has AMC too) we drove to Dallas. We arrived around 10 p.m. and stayed up while the little guys played until 1 in the morning. We got up the next morning and had breakfast, P.J. showed us his feeding machine and Jackson tried out his new adaptive equipment Wendy found for us---it's called a dip stick and is made for kids to eat ice cream cones without making such a mess---but it works well for bananas. P.J. and Jackson totally get each other and Jon and I left with yet another beautiful picture for our future and Jackson's. During our visit, several times we heard P.J. scold his brother for trying to hand Jackson a toy "the wrong way"...P.J.knows how Jackson should get a toy, he uses his hands in a very similar way to Jackson. The funniest moment came as we were leaving and we told Jackson and P.J. to give eachother five--they turned their hands "backwards" like that was just how you give five---it was truly amazing to watch them and how well they know each other.

On Saturday, it was on to Aunt Aubrey and Uncle Jason's, their kiddos and Paw-Paws. When we were about 30 minutes from their house, Jackson started asking for Paw-Paw and NeNe (his dog) and was so excited to finally see them when we got there. Jackson had a ton of fun hanging out with his cousins: Alexander, Abby, and Andrew. Andrew is a little younger than Jackson and it was absolutely precious to see him (and Abby) try to roll like Jackson!

It was a wonderful weekend spent with family.

A Visit to the Doctor

So, for a while we have been wondering where we stood on Jackson's hands. We saw a doctor at convention, who told us that Jackson's had were functional and that he would not suggest surgery. We wanted another opinion and we had been told there was a doctor in Zachary, LA--not too far from us---that had AMC, so we decided to pay Dr. Mathews (yes it only has one T) a visit. First let me say that Dr. Mathews is in total agreement that Jackson's hands are functional and his hands and arms are not tight, so he would not reccomend surgery, although he did refer us to Texas Scottish Rite for a second opinion. Secondly and amazing to me, Dr. Mathews has Arthrogryposis also! He is mainly affected in his lower extremeties, but does have some AMC qualites in his upper extremeties. He has lower muscle tone than typical in his upper body and get this he can not turn his hands palm up---yeah and he's a hand surgeon! Just proves once again that you can do anything with the mind set and God's help. It was a great visit and he is very interested in following Jackson, even though he doesn't specialize in pediatrics. Very uplifting and inspirational guy and once again our family is in LOVE with a doctor.

I got a hair cut, I really got a haircut

Enjoy!

Christmas Time is Coming to a Close

I can't believe my holiday vacation is almost over...I really want it to last longer and who am I kidding I need it to last longer, we still have a lot of stuff to do in the house...but it will come. We spent Christmas with my mom, dad is still in the hospital, but seems to be improving, so please keep those prayers coming. It was a great Christmas and a wonderful New Year Celebration. Jackson has grown so much, that I just can't believe it...he continues to amaze me everyday!

We celebrated Christmas mass at our church and the tradition is that the youngest child gets to put baby Jesus in the manger and Jackson did the honors. We had told him all day Christmas Eve about how important a job it was and after he put the baby Jesus in, he looked at me with the biggest smile! We had a great New Year's Eve celebration with our neighbors and a grand time watching the "booms" as Jackson affectionately calls fireworks!

Here is my favorite picture of the season:

And here's to a wonderful 2009 filled with lots of achievements and good health for all of you and all of us.

P.S. Jackson's party is coming soon, can you believe he will be 2?