Kayla

The following is letter Kayla is working on describing what she is doing this summer.  It sounds pretty awesome and we are proud of her willingness to stretch herself and serve.

This summer I have the incredible opportunity to intern with Heart of Christ Ministries in La Ermita, Honduras. This faith-based ministry seeks to “impact the world by sharing Christ’s love in the form of serving others, meeting their needs, rescuing them from their suffering and discipling and empowering them to become the solutions to the problems around them.” Heart of Christ has many ministries to serve the people of Honduras. Their main ministry is to rescue victims of violence and abuse. Also, they help provide women and children with food, provide basic clothing for those in need, work with local doctors and clinics to better health care and provide necessary treatments, provide school supplies for those who need it, and provide disaster relief when needed. The opportunities to serve with this ministry are numerous. There are opportunities to preach and train pastors, visit orphanages, medical brigades, construction, and teaching. My internship will be specifically in languages and medicine. I will be teaching English in local schools as well as teaching sign language to the three deaf children in the local village. Additionally, I will be able to attend medical brigades to surrounding villages and provide the much-needed medical attention. While there, aside from my role as an intern, I will be living on site with 8 toddlers and 2 special needs children and will be able to spend time with them daily. I am so excited for this adventure and cannot wait to see what God has in store for me this summer.

            I will be in Honduras for 10 weeks. The cost for my daily living is $15 a day, as well as the cost for airfare. Altogether my trip will cost me about $2000. We have set up an account specifically for this Honduras mission trip in my name. I need your help to get there. I ask for your support in any way that you may be able to give it. Financial support is always a blessing, but prayer is also tremendously important. I will be in a very different environment and my comfort zone will be stretched daily. Thank you for all your prayer and support!  

Out with 2013 In with 2014

We will definitely remember 2013.  Let's see:

Kayla is now a junior at Clemson.  The past year was not too full of big surprises or decisions for her.  It has begun the process of answering the question of what will I do after Clemson?  Otherwise known as what do I want to be when I grow up.  I imagine this time next year will hold some answers to those questions.  We pray for her this year that she will continue to keep her heart open to God and will hear his voice of direction in her life... even if it is only a whisper of what her next step should be.  We pray for her to have the courage to follow His voice and that Gary and I will be able to help support her in any way necessary.

Noah has now completed his first semester as a college student.  This year was filled with decisions and life changes for him.  He has done a great job of transitioning from a high school kid to a college young man.  The next year for him will be about discovering just how far he can go.  His coach is challenging him athletically and in his leadership abilities.  He is getting more focused academically both in his grades and direction.  We pray for him this year that he feels God's presence and relies on Him when his limits are being pushed.  That he will find young men like minded in faith at his school and continue to study God's Word.

Mckenna has/is turning into a teenager in front of our eyes.  She has gotten the hang of middle school and is ready to hit her stride.  We pray for her to grow in confidence.  That she will know the talents God has blessed her with and learn to develop and use them for His glory.  We also pray God's protection for her as middle school is not often kind, that she will work her way through this year with grace and kindness to others that show's God's love to all.

Ayden Jane spent her year doing lots of things that she was not supposed to be able to do.  I think that she will spend 2014 in a similar fashion!  We pray for her to find activities that she loves as activity is not really an option or luxury for her but a necessity.  Things like swimming, running and biking will hopefully be things she loves to do and then she can train for a triathlon!  How cool would that be?  We pray that academically she can continue to keep pace with her peers and that we can find the solution needed to help her get her hands writing efficiently.

For me, the year has hopefully been my last as a full time mom for a while.  Not because I don't enjoy it, but because it is time to take some of the financial responsibility off Gary so he can be around more.  I pray for my schooling to finish up and for the right job to come my way.  A prayer that all I have learned for the past 6 years being the mom of a special needs kiddo can be used.

Gary spent 2013 working.  Then ended painfully with the loss of his mom. He has put aside a lot and missed a lot to keep us afloat.  I pray that for him 2014 offers more time to enjoy what he wants to enjoy, more time to spend with his kiddo's (and me!), time to pursue career goals, time to get back into singing and ministry at church, time to live.

So, not exactly resolutions, but hopes and dreams for 2014.  May they all come true.

Birthday Wishes from Clemson

Ayden Jane's birthday is not officially until tomorrow, but she was spoiled rotten all weekend by Kayla and her friends from Clemson.  It started Friday night when they arrived and played on the trampoline with her.  It was so fun to hear all the squeals of laughter through the window.  I think Ayden Jane outlasted them!  When they could jump no more they came in to read books.  How cute is this?

The main event was on Sunday.  I took Mckenna to Charleston for a soccer game and the Clemson crew took Ayden Jane on a day of adventure.  The grand finale of it all was a trip to Build-A-Dino.  Ayden Jane told me all about how they kissed the hearts and stuffed the dinos.  Then about bathing them.  Of course she had to explain that they actually used air and not water but still called it a bath.  We walked the dogs after the crew left and Ayden Jane recapped her day for the entire hour.  Some of my favorite quotes were; 

This was the best day of my whole life! 

Today makes me six already because it was the best birthday ever.

I went in and when I saw the one I picked I totally knew that was the one I wanted.

Well you get the idea.  Here are a few pictures of Ayden Jane's dinosaur birthday.

 

Great Weekend

Kayla came home from Clemson for a visit and brought two friends with her.  In Ayden Jane's mind they all came here with the sole purpose of hanging out with her!  The way they spoiled her would make every one think that were true.  Ayden Jane enjoyed being the total center of attention for the better part of two days.  Here is a picture of one of their adventures!

When the girls had to go Noah softened the blow by taking AJ swimming.  We topped off the day with a movie and early bed.  Can it get any better?

Happy Birthday AJ !!

Wow, Ayden Jane is officially 5!

We did not do the invite your class birthday party thing...  Honestly, we haven't for any of our kids.  We tend to be more of a family celebration sort of family.  Celebrating Ayden Jane's birthday has been a several day affair this time around.

Kayla came home from Clemson which was a huge present for Ayden Jane.  Thank you to Kayla's friend Ali who provided Kayla with transportation and Ayden Jane with an extra special birthday.

First up, Ayden Jane blowing out the candles.  We had lots of chances for this picture because apparently, we need to work on her blowing skills. LOL.

So what are they?  Strawberries and bananas dipped in dark chocolate.  She loves to make 'em and loves to eat 'em.  No interest in cake, these are her favorite things hands down!

 

Next up we have a day of swimming and paddle boarding in the ocean!!  It was cold, but they had a great time anyway.

Yep, that's Ayden Jane getting a ride out in the 'deep deep' on the paddle board.  She thought it was the coolest thing ever.

This is Ayden Jane playing with one of her presents.  I think it is the first thing she has drawn on that she actually likes to draw on!  More on that coming up!

Raising Teenagers

Yesterday we traveled about 4 hours (each way) for Noah's state cup soccer game. The boys lost a heart breaker as they really out played the other team but gave up a penalty kick to an inadvertent handball in the box and one bad play by the keeper. No real earned goals... Noah scored the only goal for our team and played well but was very upset when he missed a shot with about a minute left. Poor timing and communication left him in a bad position to make the shot which could have tied things up and sent them into overtime.

Noah has played with many of those boys for so many years and the possibility that he may move on to new things next year makes it a bit sad. He was so hoping to go out with a real run at the state championship. I am a proud Momma though. He plays up an age group (and always has) and he has worked hard over the years to become an excellent player. I am not sure what the future holds for him, but I know that he has learned to work hard and get along with all sorts of people. He has learned how to lead over the past couple of years. He has learned how to not only dream, but to do the things necessary to succeed. Whether in soccer or education or work or .... life; he will be able to apply those same things. The teenage years are an amazing time to watch your kids. I have been honored to be apart of the lives of 2 incredible teenagers so far.

Kayla is on the verge of college and truly beginning her adult life. She is focused and intelligent and caring and wants to use the giant brain God gave her to help people through some form of medical research. She knows and loves God, makes great choices even in the little things and treats others with respect. I would love to think that there is a magic formula we used on these first 2 that will work on the next 2. I suppose to an extent there is. Pray for them, listen to them, pray for them, talk to them, pray for them, listen to them...

That's my plan and I am sticking to it.

Awesome Sister and Upper Body Work

So, although this blog is mainly about Ayden Jane, she obviously has 3 siblings. I just have to pause to brag on what a great kid our oldest, Kayla is. It has been an incredible week for her. She has been officially accepted to Clemson (not sure if that is where she will go) and offered scholarship funds already for her academic record. She was selected for the all state volleyball team. Her high school team is heading to round 3 in the play offs. Most amazing though, is the hardworking humble spirit she has. She works part time and has decided to use her money to return to Guatemala this Christmas to brighten the lives of the girls at the Oasis, a home for abused and neglected girls there. She also hopes to visit with Oscar, the child we sponsor through Kids Alive. It will be hard on Mom to have her gone for Christmas, but I am proud of her that her choice is for Christmas to be about brightening the lives of others, not about what she will receive.

Now on to Ayden Jane news. We had a genetics appointment yesterday. I still go to see Dr. Pai because he is interested in learning. He asks me what new research I have heard about, conferences I have gone to... He really wants to know and takes notes. Mostly, he just follows Ayden Jane and really does not have much to offer us, but I love that a hospital like MUSC has a guy who at least is interested in learning.

As for Ayden Jane's new 'needs', yesterday we hit the playground near out house. I guessed that bars would be good. Wow, that is exactly what she wanted! She loved climbing the ladders and she can just reach the first monkey bar on her own now. Of course, she shoves me away if I touch her while she gets her grip and lets her feet fly. She like to swing on them and have me catch her as she falls. Then I hold her feet and she goes hand over hand across them like a pro. She is definitely craving upper body work. Ideas anyone???

Happy Birthday Kayla

Because Kayla (as well as Noah and Mckenna) is a big part of Ayden Jane's adventure, I think this post applies. Kayla has made a big impression on AJ and as you will read, AJ has had an impression on Kayla.

First of all, my Kayla. She is 17 today and entering her senior year of high school. She is very bright and a true student as well. As a teacher I found it a rare combination in a student to have both brains to get away without studying, and the drive to study anyway just because you are driven to learn. That's my Kayla. Even before Ayden Jane, she was headed for medical research. We have dear friends who headed down the path of another, more rare and more medically complicated rare genetic disorder with their son. He is a miracle and Kayla was drawn to all they were doing for him. We even went and stayed at the Ronald McDonald House to give his mom a break when he was undergoing bone marrow transplant. That sealed it. Seeing the hospital and hearing about all they were doing for him, she was hooked. Then came our journey with Ayden Jane.

Now she is looking into college. She has lots of opportunities and we are hoping to find the magic balance of quality school, place she is excited about and good scholarship to make it affordable. So what is she interested in going into? Genetics. She has listened to me talk about gene expression, was the wall for me to talk to as I try to understand SnoRNA... and her eyes don't even glaze over. Now I don't think she has any grand desire to cure PWS per se, but I'd take it! (Well, I am sort of hoping that one will be well on its way by the time she would get through with school anyway.)

It is strange being a parent at this stage. I think of Kayla so clearly as the little girl with the bright blue eyes and big grin that could crawl like lightening, or the slightly neurotic 5 year old who started her day with "what is the plan today" because she really needed to know, or the somewhat shy middle schooler who was every bodies friend because she was the antidrama (pretty sure her brain was just too busy subconsciously solving algorithms), or... but she has become a beautiful, brilliant young woman who knows and loves God and has a big heart for those who have a battle to conquer and the drive to hang tough and find solutions. I don't know what I thought she would grow into when she was tiny, but I cannot think of anything I could possibly be more proud of.

So, Happy Birthday Kayla. Thanks for 17 great years! You have already been such a blessing. Here is a picture of Kayla from her mission trip to Guatemala. I won't be surprised to hear about many medical missions trips over her lifetime.

Gone are the days...

There once was a day when Ayden Jane was quiet. I mean eerily quiet. Other PWS moms know the sort of quiet I mean. Surrounded by all the crying babies in the hospital, but not a peep out of Ayden Jane. Blood draws, not a sound. Time to eat, still no crying. Gary jokingly told the special care nursery nurses he would give $100 to the first one to make her cry.

That was 2 1/2 years ago. Flash forward to today. Kayla was trying to watch TV and Ayden Jane was working on a puzzle. She noticed the 'tweet tweet' was missing. She started calling, "tweet, tweet! WHERE ARE YOU? TWEET TWEET..." Of course, I noticed it was driving Kayla crazy so I gave Ayden Jane a play cell phone and told her to call the bird. Let's just say that 20 minutes later she proved she does not understand the concept of a telephone. She considers it a megaphone and called all the animals in the puzzle. Kayla was pleading with me to get her to stop so she could hear herself think. Me? I was very much enjoying watching little sister drive big sister crazy!

Marathon

Today I ran 16 miles as part of my training to run in the Myrtle Beach Marathon. I thought about running a marathon before, but honestly would have been satisfied with a half marathon. I decided to do this, however, as a fund raiser for the FPWR and it just seemed to sell short the efforts of people with PWS and the efforts the researchers are making to do anything less than a marathon. It was grueling. Of course, I managed to pick the coldest day of the year, and I don't mean because it is only Jan. 3. It was hard and there were times I wondered if I can really do it, times I wondered if it was worth doing it, times I wondered if I can do it... yes, there was lots of time. I guess what it comes down to is I really don't know if I can do a lot of things. But the first step in doing them is to try, so I am trying.

Two and a half years ago, I was preparing to have our fourth child. I was pretty confident in my parenting skills and although I must admit she was quite a surprise, I knew we would love her and she would just fit into our family and our lives. When the unthinkable happened and she was not born 'normal' and healthy, we operated fairly well in emergency mode. After a while, however, it was apparent that this was not a short term problem and emergency mode is exhausting. As the tests for unimaginably scary disorders came back negative we gained a false sense of security and operated under the pretense that if we put in the extra effort for a few more months, she would pull out of it and everything would catch up to the picture I had of her in my mind before I met her.

I think, for me, the hardest part of parenting Ayden Jane is figuring out how to balance the strain of trying to do everything I can for her, learning all I can, planning all I can, working with her all I can... with the fact that this is not a short term deal and I need to take care of me and just enjoy Ayden Jane and Kayla and Noah and Mckenna and just chill out sometimes. I know that God is in control of Ayden Jane's future and that he wants me to enjoy the 4 amazing gifts Gary and I have been blessed with. But I also know that with each gift of a child there comes a responsibility to raise them, teach them and train them with the tools they will need to live out God's plan for them. That is a challenging balance for parents even when the children do not have special needs. I will strive to do what I can each day, not stress about what goes undone and enjoy the time I have with ALL my wonderful, amazing kids.