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!

Monday, January 30, 2012

Now....

Yesterday morning I dropped Jackie off at a local church so that she could take a bus with her bible study group to Philadelphia.  They left at 7 in the morning to spend the day with homeless people near Chinatown.  They had church service and prepared an enormous breakfast to share after.  I don't think I have ever been so proud of anyone!  She was so excited to text me and let me know that she was making eggs with her new friends, when we picked her up in the afternoon she could not contain herself as she told us about the men and women that she met.  She did not care that one was missing a leg, or that they hadn't had a shower in weeks.  She hugged each of them that wanted, was thrilled to be serving them, and laughed all day as they shared stories with her.
Her disabilities didn't matter ALL day.  Not one of her "new friends" complained that she talked too slow or that she was not dressed like your average 15 yr old.  As a matter of fact, she cannot wait to go back!
Jackie may have been born missing part of her brain but God made up for it when He gave her the biggest heart! 
Acts like these are not uncommon for Jackie.  She is very involved in our youth group at church, she will spend hours talking to a friend that is down, and hurts when her sisters hurt.  She has wanted to do something like this for a long time but we were always hesitant.  What if someone takes advantage of her, what if she gets lost, what if she has a seizure and she is 2 hours away?
At church on Saturday night our Pastor was talking about having faith and how, when interviewed, so many people age 70 and above regret not taking more risks in their lives.  I decided at that moment that I have to have more blind faith.  Faith that our God knows our purpose, has planned our tomorrows and loves us more that we will ever know.  I thanked Him for my beautiful family and promised that I would try to be more trusting in Him.
For so long I have tried to protect Jackie, make all her decisions for her, hold her hand in just about everything.  I am the same way with her sisters :)  I have come to accept that God has a plan for her too, that is why He gave her that enormous heart!  I can only imagine how she blessed those "new friends" on Saturday.  I can only imagine the faces that smiled at her, that probably haven't smiled in years and I thank God that He made Jackie just the way she is and that He trusted us enough to give her to us.
So for those of you that are new to ACC, or not so new but question your child's future, please let these words be encouraging to you.  It is amazing what our children are capable of with just a little bit of encouragement and guidance from us and unwaivering faith in Him!
As terrible as I am at keeping up with this blog please e-mail me with questions, advice, encouraging words of your own ANYTIME!