Thursday, August 16, 2012

New Chapter...

Summer has been busy!  Mostly good...after Jackie was hospitalized in April for 4 days with severe kidney pain and vomiting they discovered that her bowels were completely impacted also.  All that aside, when we left the hospital we really believed that we had a handle on these issues at least.  She had never once complained about belly pain before so we thought maybe the combination of her kidney and bowel was what caused her severe exhaustion and at times not being able to motivate her to do anything.  May and June we were extremely optimistic as her mood improved immensely, she was thrilled to be outside playing with her sisters, was swimming the day we opened the pool...I had my happy girl back!  She finished school with A's and B's and we were all so proud of her!  As much as I wanted to believe that her new medication would continue to keep her feeling great, it is hard sometimes to not wait for things to change again.
At this point we have seen the cardiologist several times and ran all the tests for them to tell us that they are inconclusive, her neurologist has no explanation for her ups and downs and our family doctor just tells us that we have to revel in the ups.  How frustrating!
In the last few weeks, she has been really struggling with body temperature, when it is hot outside she will say she is cold, the pool is 80 degrees but she refuses to swim because she is freezing ...and the only time she really seems happy is when she gets home from youth group on Wednesday nights. 
She is very excited for school to start and this year all my girls are doing cyber, I am SO looking forward to them being home!  Sometimes I think she just does better with routine...and during the summer we try not to have one! 
Jackie's sisters get frustrated because they want her to play and swim and all I can do is try to encourage her to appease them :)  This is our every day...I am working hard right now to find opportunities for her to be involved in things that she really enjoys, being with young children and around animals.  She will be 16 in November and wants nothing more than to get a job, this is my new mission ...finding a small job where she will be accepted for who she is and safe, of course.  I admire her desire to be independent and we try very hard to allow her to do so.  Not so easy in today's crazy world. 
I know I am rambling, that is what happens when I only write every once in a while, but it is hard sometimes not to let my head go in 15 different directions :)...My newest brainstorm is to build a local foundation for children like Jackie...raise money for research for ACC and establish local resources to assist families like ours connect our children with the outside world.  I am stuck on where to start...if there is anyone out there that has any experience or knowledge in this area, I could really use some help!  I have tons of ideas, I know there is a huge need, especially in our area...I just dont know where to begin.  There are so many kids out there that have disabilities but also have the wants, desires and heart to be so much more but don't necessarily have the ability to voice it. 
Well, everyone is waking up, time to go make breakfast and get them ready for the day...the weather is gorgeous, think we will just spend the day by the pool.
As always, thank you for reading, your families are in our hearts and prayers always!


  1. Thank you so much for all the detail information you write about Jackie, it's really helpful. I'm a new mommy of twin girls (6 months) and one of them has ACC.
    Your story will def help lots of mommies like me... Because to be honest I'm terrify about my baby girl's future. I would love to hear more ... How is Jackie doing? Did she find a job!? :). Sounds like she is an amazing girls <3

  2. I would love to speak with you regarding the potential for a foundation or some sort of support for children and families with ACC. I have worked with non-profits and foundations in the past, so maybe we could get something going.

    My wife (Natalie) and I found your blog incredibly helpful, scary at times, but thankful that you shared as it prepares us a bit more for the unknown. Thank you so much for taking the time to write, even if sparingly, as 3 kids is no joke.

    Please contact me using the contact form on my company's website if you are interested ( I don't want to put my phone number or email publicly as it may get abused.

    Even if you're not interested, or don't have the time anymore, know that you have already made a difference. We are all alone until we realize that all we need is to do is connect with others.