Senior Day at Wheaton

Such a great time watcbing Noah play in person one last time. It was the only game I was able to attend in his two years at Wheaton. (So thankful for the live feed on computer). Loved getting to meet some of his friends and their parents. Loved hearing him talk the entire game long as he directed and encouraged his team. Was able to see his first goal of this season (and possibly only) So great having the entire family there to cheer him on even in the cold, misty Wheaton weather. Ayden Jane watched the game intently and asked questions and cheered for her brother. So cute. Noah summed it up well, "it was a great senior day. We won 4-0, I scored and my whole family was here." 

We have watched Noah play soccer since he was a little, 4 year old boy. He played with such joy and watching him last night, he was having fun! That's how it should be. He was enjoying the gift of athleticism God blessed him with. He was enjoying the comraderie that goes with a tight knit team. He was thoroughly enjoying the game he has played his entire life, but with a peace that the end is near. It's been a great run and he is ready to transition to life without soccer. Hard to believe.

We also spent some time just hanging out and enjoying fall. Something we don't really have here in Pawleys. There are times as a parent you wonder if you are doing anything right. Okay, there are a lot of times as a parent when you wonder if you are doing anything right. Then days come along when you get to just watch your kids relax together and enjoy each other. You put aside the worry and just enjoy the amazing people they are turning into before your eyes. Each has there own challenges to conqueor and missions to accomplish and I have no idea where life will take them. I can say for certain, however, they are good people who know how to laugh, love, serve and be kind to others. Love them all.

Visiting Noah

 

It was a beautiful day for a trip to see Noah at Coker.  Ayden Jane was very excited and so was Noah! We arrived quite early, just as the team was beginning to warm up. Noah jogged off the field and was greeted by Ayden Jane running toward him.  So sweet for a momma to watch. Giant hugs and giggles.

I don't have pictures (but I should) of the surprise Ayden Jane received that same night. Kayla and Allie came from Clemson to watch the game with us. I had not told AJ they were coming. At first it was because I wanted to be sure it was going to happen. Later, because I did not know when they would arrive and did not want to hear the constant, "can you text them and see how many more minutes?"

It was a fun evening of soccer watching, chasing and playing on the sidelines and visiting with Noah at Zaxby's after.

I wish the picture was more clear, but it was so cute as Ayden Jane ran across the field to get Noah after the game just like she had done for years. She held his hand for a little while as they walked and she just looks so little next to him.  Holding a hand seems like such a simple little thing, but it is one place we have always seen/felt AJ's sensory oddities.  When little she would absolutely NOT let you hold her hand. It made for interesting parking lot navigation! Now, she occasionally reaches and holds your hand for as long as she can stand it. Know if she takes your hand you are special!

     

Photo Shoot

Each Christmas vacation for the past 4 or 5 years we have taken pictures with the 4 kids.  Nothing grand or majorly planned (as outfits will prove) but just some fun pictures of the 4 of them together.  This year we were blessed with the help of a friend (thanks Dina) and the quality of our photos is much improved!!

We loved so many of them I just couldn't wait to put some up.  Notice the One Small Step t-shirts!

Merry Christmas

A great Christmas morning.  All we were missing were Grandma and Grandpa.  The usual routine is to wait until Grandma and Grandpa arrive to open all the gifts.  The kids are so used to having to wait they don't even bother to get out of bed early.  Well, except for AJ.  Once we got the go ahead that it was just us we sent AJ in to wake up the big kids.

I have more pictures to download, but here is one of each of them for now.  Mckenna enjoying her stocking.

Next up is Ayden Jane excited about her new stuffed giraffe!  We successfully talked her down from the real one.  Woo Hoo!

Kayla some how avoided most of the pictures...

Noah enjoying the view as the younger kids were opening presents.

Noah helping AJ figure out one of her presents.

Our day continues at grandmas house with more presents and more food....  Ayden Jane has continued to discuss Christmas and always comes to the same conclusion....  "I love Christmas"

AJ Quotes

Kayla is home for Christmas break and she and Ayden Jane have talked a lot.  Kayla is great at remembering the crazy things AJ comes up with in a day so here are a few she remembered when I asked tonight.

AJ:  Kayla, what do you call those people we don't know?
Kayla: We call them strangers
AJ: Why do we call them that?  They are not strange?
Kayla:  It's because we don't know them.
AJ:  I can fix that, I can get rid of the strange by asking them their names...


In church they were lighting the Advent candles.  Ayden Jane asked Kayla why they were lighting candles.  Kayla told her because it was Advent.  Ayden Jane then asked if it was Advent's birthday.


I gave AJ a snack before bed and sent her on her way saying, and don't ask for anything else.  As she got to the living room she said to Gary, "Dad, you know peanut butter really sticks to my cheeks.  I would greatly appreciate it if you could get me some tea."


Mckenna accidentally stepped on one of our dogs.  She told the dog, sorry Sadie I didn't see you there.  AJ chimed in with, "well then Mckenna you must need glasses."

Noah

Although Noah is still in the fall of his senior year he has felt a lot of pressure to decide what next year will bring.  It is/was a good sort of pressure.  The kind that has lots of options.  He is a soccer player.  Well, actually he is an awesome soccer player.  In fact, he is just a great athlete, but soccer is the game he has poured most of his time and talents into and the game he just loves to play.

Starting really last spring Noah has been receiving mail and email from colleges all over the map.  Some of them big schools some of them not, but all telling Noah how great their school is and why Noah would be a great fit for their soccer program.  It is good to be wanted, but it is still a tough decision.  All the while he has worked, played HS soccer and basketball, played travel soccer and done, well, most of his school work.  I'd say that's a lot for a 17 yr old boy.

So, after hearing from schools as far away as Xavier, Sienna and Goucher who have seen him play in tournaments; after visiting and meeting with countless coaches closer to home he has come to the conclusion that he will attend and play soccer for Coker College, about 2 1/2 hours from us here in SC.

We are proud of the choice he made.  He is choosing to go to a smaller school where he feels he will do well not only on the soccer fields but academically.  He is choosing a soccer program where the coach has a program built on integrity and expects his players to have great character on and off the field. Noah wants to enjoy playing college soccer and get an education that will prepare him for Law School.

Noah really liked Coker when he went and trained with them a long while back but we felt that he needed to explore the other options out there.  Having done that he has come to the decision that after every place he sees and every coach he speaks with, they just fall short of how comfortable and at home he felt at Coker.  Honestly, it is great to see the weight of the decision off his shoulders.  He is one happy kid!

Congrats to Noah, a Coker Cobra!

Perspective

As most of you know, we have a total of 4 children.  To some people this seems like a LOT of kids.  I have to be honest that it doesn't seem like such a large number to me (although on a bad day, I have been known to think otherwise).

It is just fascinating to see the similarities and differences between the kids.  It is awesome to watch them together and enjoy watching them grow.  I wish sometimes we could just scoop them all up and head off on a secluded vacation and just enjoy them and hang out as a family.

The real point of this post though, is our unique situation of having kids at such different stages.  On one hand, it is really cool to be able to see 'the whole picture' all at once.  I know, it's not like we really have the WHOLE picture, we don't have infants or adult kids with grand kids or anything...  But we do span preschool to college!  That's plenty.

It has given me great perspective with the younger ones. I remember my first time through preschool and how huge and important things seemed.  Now they seem important in different ways and I look more for ways to enjoy them.  That is partly because Ayden Jane is different and I just jump up and down with joy for achievements that place her as average, but still... As Mckenna is on the edge of heading toward middle and high school and those years of pressure I hope to help her have great perspective on what is important.  Simply put, God.  She has talent galore, brilliance, beauty and a sweet spirit.  The key to finding her way and  and growing up happily is to know God and allow Him to guide the use of such talent.  It is so easy to get caught up in our kids talents and abilities, but for our family, staying rooted in faith makes them confident, content kids. When they begin to trust in their own abilities it begins to get rocky...

I don't say this as a parent who has already done everything right.  (like there are any of those!)  But being able to look back and see what has worked and where we went off course.  All the rocky patches are rooted in finding value in what the kids could DO not who they ARE.  Often times because they found their own value based on their accomplishments and then discovered that sometimes others were smarter, faster, stronger, more talented...  Then what?  It is easy to do this as parent as well.  We are proud of their successes and sometimes it seems like that is why we love them or are proud of them.

The best 2 solutions possible for this pitfall are experience and Ayden Jane.  Experience, because we learn from mistakes...  Ayden Jane because we all love Ayden Jane for who she is.  We admire her determination and know she is valuable.  I mean know beyond a shadow of a doubt that she is awesome and has a purpose.  She sucks in all the positive vibe and is just happy to be who she is.

Yep.  If I could go back and do it all over again with my other 3, I would do my best to build them up and cheer on their every tiny step.  I'd drop everything and tell them how awesome they are for no reason at all other than because God made them just like they are with unique, amazing personalities and gifts.

Good night all.  I have some kids to find ..

Siblings

Lately I have been thinking about the many ways that PWS effects Kayla, Noah and Mckenna.  A few things have triggered this like telling Mckenna stories of what she was like at AJ's age, Kayla shadowing Dr. Miller in Florida and Noah being amazing with a friends special needs son.

It is really true that PWS not only affects Ayden Jane, but our whole family.  There are things I hate about how PWS has effected our family.  Like the stress of finances, schedules, pushing AJ to work hard, constant monitoring and worry about things that never even happen - I could name lots more, but you get the picture.  Growing up in a stressful house is not something I wanted any of my kids to do and I THINK we do a pretty good job of not letting the stress get to high.  We laugh a LOT.  My kids honestly enjoy each other and we have fun as a family.  Not a given with the age span, special needs and crazy schedules.

PWS has ingrained a sort of you can do anything you put your mind to attitude across the board.  We approach Ayden Jane with the attitude that she can and will do great things in this world.  What those will be we have no idea, but we strive to help her do as much as she can and don't ever assume that her missing genes will determine the heights she will reach.  Obviously, there will be strengths and weaknesses that will guide her way but we have come to attack everything she comes up against with a 'how should we get around/through this one' in stead of 'will we...'

Individually, being a sibling of a special needs child has effected each of them a bit differently.  (I know, shocker)  Kayla has her eye on medical research.  Not sure what area... or what context yet, but she had a great week shadowing Dr. Miller and some others and loves the clinical side of the research.  She is naturally accepting of special and medical needs and wants to solve things...

Noah is the protector.  He has developed a unique bond with Ayden Jane.  He is totally the big brother. He picks on her and messes with her but somehow she takes it totally as fun with Noah.  I just love to listen to it.  He can also get her to do and say crazy things and just, well, relax.  That sure is valuable in the life of a PWS child!  The interesting thing is that although he talks tough...  He is a softee for special needs kids in general now.   He has a couple of friends with siblings that struggle with autism.  He has the same ability to make them relax and be comfortable and happy around him.

Mckenna, there are so many ways I see 'special needs sibling' in Mckenna.  Of course, partially because she has totally grown up with Ayden Jane and the others were much older when AJ was born.  There is an incredible, strong will within Mckenna.  It comes out as a gentle, encouraging spirit when she is with AJ though.  Gently encouraging Ayden Jane to do everything that the other kids can do.  Just say that AJ won't be able to _________ and Mckenna will already start a plan in action to prove you wrong.  No just is not something Mckenna hears.

Mckenna doesn't really know that she is so strong willed and stubborn, but she has enjoyed listening to Kayla talk about what she was like at Ayden Jane's age.  She retells stories of Mckenna flat out taking Dad on and refusing to cave.  She tells Mckenna how she and Noah cowered, just hoping Mckenna would give in as they just didn't want to see how such a stand off would end!

In the end, I think all the kids have benefited from their roles as special needs sibling.  It has rounded each of them out and taught them that not everyone is equipped the same, but everyone has the same potential to be awesome.  They all see the person, not the disability.  They all have a unique gift to offer those with special needs.

More B-12 and Spring Break

Spring Break was a great week!  It was like a 3 part vacation with family coming in the first weekend over Easter, some beach, playground and spring cleaning time in the middle and then Kayla bringing 4 friends from Clemson in on the last weekend!

Ayden Jane and I tried to clean up a bit and play a lot mid week.  I got her back on the B-12 and it has been awesome!  She is much more her typical self with behavior.  I even bumped her dose and bit we had this bizarre thing at the playground.  She has tried for a loooonnnggg time to walk along the edging of the play equipment on the playground.  It is a low, black plastic wall to keep the mulch in.  She likes to try to walk on it like a balance beam, but has not been very successful.  Last week she popped up on it and started walking foot over foot a long way and was just rock steady.  It was so strange!  Just a week earlier when we were there she could no where near come close to that!

Kayla a company were great to have around.  They are really nice girls and they were so great to Mckenna and Ayden Jane.  Mckenna tagged along to the beach and Habenero's and where ever.  She played Mario Cart with them and they never felt like she was a bother.  Ayden Jane was thrilled she always had someone to talk to!  AJ went swimming a bit, but it is still cold.  She is still determined to get in and ride waves as soon as we get there.  After 20 or 30 minutes in the ocean she wants to get out and warm up but so far the breeze at the beach has made warming up impossible!  The kid literally turns purple and requires a hot shower to get warm again.  (I know, bad parenting... but I take her home to the hot shower!)

Spring Break

I have been oh so slack about posting lately.  If I had to give a reason I guess it would be that there are too many things to talk about.  So, instead of trying to cover anything to update you on AJ, I am going to check in on the other 3.

Last weekend Kayla surprised us by getting a ride home for Easter.  It was a very short visit, but it was so fun to reconnect a bit.  Gary, Noah, Kayla and I stayed up very late on Friday night listening to stories and being entertained by Kayla and Noah catching up.  They really do miss each other and it will be great to see them head into the surf together this summer.  Ayden Jane attached herself to Kayla.  Everywhere we went she wanted to go in the same car as Kayla.  If Kayla sat down, Ayden Jane sat on her...  It was fun to see Kayla so surprised at some of the things Ayden Jane says.  When Kayla was home at Christmas, AJ was still fighting all the bacterial infection and just was not so much herself.  The verbal skills that popped out after she got better are soooo entertaining!

Kayla is finishing her freshman year at Clemson.  So strange to think that this time last year she was 'caving' and choosing to go to Clemson.  Now she would say it was the best decision ever!  She has thrived at college.  She is bringing some friends here this weekend to visit the beach.  It will be nice to meet a few people from her new life. She will head back to finish up and then will get to head to Florida and spend a few weeks doing 'student research' at UFL with Dr. Miller and some of her colleagues.  So cool.  Finally after that we will have her home for 3 months!

Noah is turning 17 soon.  He is working on where he wants to head to college... all that sort of stuff.  I think to some extent the end of his junior year is sort of like preparing for the storm.  His senior year will be filled with college applications, soccer and working.  Oh, and choosing where to spend the following four years and start his future!  He has had several colleges contact him regarding soccer, but not ones that he even had on his radar.  Merging what he wants in a major, finding a soccer program that he will fit well with and hopefully finding an affordable option will be challenging.

Mckenna is turning 11 in a month.  She will head into middle school age next fall and has lots of great kids for friends.  She is enjoying art and soccer and was invited by her music teacher to be a part of a program for music and drama.  She is brilliant and sensitive and truly just beginning to 'find' herself.

That's the wrap up around here.  I will try to be more interesting next time.

Noah the Great

Ayden Jane is slowly getting better. I would say she is still hungrier than usual, but can handle the word no. She is able to play and has an attention span, just that she cannot play by herself yet. She is a bit itchy, bouncy, touchy... sensory seeking, but handling it. She is talking CONSTANTLY and often about nothing, but it is really clear! Guess it helps to get all that junk out of your head. I guess the best way to sum it up is that she is feeling better and returning to her old self, but she is HIGH maintenance. I think I spent all day Fri. and Sat. keeping her occupied.

Enter Noah the Great. I could hardly even get a shower this morning, the house was a complete wreck. You know the way a house gets when the kids have been sick a while. I had a list of things I needed to do and I work tomorrow. Noah returned from spending the night at a friends, took one look at me and offered to take Ayden Jane to church with him. Wow. I needed to go to church, but a whole morning to reorganize? I turned on the christian radio station and dove in!

I managed to get the house straightened up, several loads of laundry in and improved my mental status greatly!! I fed the kids when they came home and then Noah the Great took AJ and Mckenna swimming! I cleaned Ayden Jane's room, managed more laundry and saw the light at the end of the tunnel when it was all said and done.

The cute part of it all was that Ayden Jane just totally attached herself to Noah. He was completely her hero. She wanted him to eat with her, sit by her, listen to her, get her milk for her... Noah hung in there and made Ayden Jane and I both deliriously happy.

Clemson

Kayla has been at Clemson now for a few weeks. All the kids really miss her. Kayla and Noah surfed together, went out to eat together, went to church together, stayed up late and did homework together. They have such a great friendship beyond the sibling relationship. It has been so much fun to watch them grow up together and it is a little strange without her. Noah looked a bit lost at Grandma and Grandpa's for a Labor Day picnic. There was no partner in crime.

Mckenna is 8 years younger than Kayla but despite the years, Mckenna feels quite close to Kayla. They double team Noah together and when Noah is not around Mckenna messes with Kayla. Mckenna gets so excited when she sees Kayla is on facebook and she can chat with her for a few minutes. (yes, my 10 yr. old has a facebook and yes, I would have never let the older 2 at her age...) I know Mckenna is very excited to show Kayla their new room now that they are room mates.

Ayden Jane soooo misses Kayla. She has the added trouble of not really understanding this whole college thing so she keeps asking if she is 'done yet'. Ummm. No AJ, Kayla will be at college longer than few weeks. Kayla called today with a random question for me, but Ayden Jane wanted to talk to her. It was so cute I almost cried. She told Kayla, "I love you this much!" with her arms spread wide. Then AJ told her, "I miss you. I wake up every morning and give you kisses." Wow. Good luck Kayla getting Ayden Jane to let you out of her sight when you come visit:)

It has been so much fun as a parent to see the differences, similarities and relationships between all the kids. We are blessed with great kids who have enough in common to be able to relate to one another and yet are different enough in personality that they get along really well.

The dynamic left at home is a bit different. It is much quieter which is funny because Kayla is not the noisy one! I think the others just have so much fun messing with her it winds everything up. Noah is now driving and it is strange to see him go by himself. It was always the 2 of them. He is really stepping up as the lone big sibling and Ayden Jane has attached herself to him quite a bit these days. I guess it can be tough to be a boy with 2 little sisters! He even took Mckenna out for a treat tonight. Used to be Mckenna got left home and the 2 big kids went. In some ways the changes are good, but we will all be glad when things get back to normal around here! You know, at Christmas.

Big Changes on the Horizon

The big change in our household is Kayla heading off to Clemson. She leaves in two weeks and we are all excited for her. It will be interesting to see how Ayden Jane grasps the concept. Kayla has sort of been preparing all of us this summer by staying quite busy and not being home too much. LOL. The last time she came home after spending the night with a friend, Ayden Jane asked her all excited, you come home from Clemson?!

Ayden Jane knows that Kayla is going, but it is hard to grasp the time frame. You know, it's not like she has great calendar skills yet! So today when she was asking Kayla about it again, I told her Kayla would be coming home when Christmas comes. Of course, she will be home before that and I will likely have to explain why it is not Christmas yet, but it was the only way I could think of to get Ayden Jane to think longer term!

For the past 2 years, Kayla has been driving and Kayla and Noah have been sort of taking care of each other. They had their own transportation and each other to go and do with when I have been off to horses or at Mckenna's soccer... It will be great for Noah to be able to have the car and get where he needs to go, but it will be a bit sad that he will not have Kayla to do much of it with. As a parent, it has been a pleasure to watch them grow up together and cheer each other on. They are siblings, so it is not all joy, but they do get along amazingly well. At Kayla's volleyball games, Noah was always her biggest fan. Kayla made sure Noah got out of the house on time for school... They can surf together for hours, literally. Today they were in the ocean from about 8:30 am to 5 pm. The only reason they came out was because they knew they were expected at Grandmas for supper! Their personalities are opposite but they bring out the best in each other.

Big change 2 is that Noah will be getting his license soon. The car will be his and he will have a lot of responsibility on his shoulders. I head out the door in the morning with the little ones to get them to school and he will have to get himself out of bed (and not fall back in after I leave) and get to school. He will will be driving... He will be on his own at times and other times he will need to take charge of Mckenna or AJ or errands. It is Noah that we will be visiting colleges for... He is ready, but it is still a big change.

New teachers and classes for Mckenna and Ayden Jane. The big change for them, however, it that we will be rearranging bedrooms!!! More on that in the coming weeks.

End of School Wrap Up

It is the end of yet another school year. With one graduating from HS this year, there have been a lot of school years ending!

Kayla is 17 and graduating on Wed. She is amazing. She has worked hard in school and is more than prepared for college. She has managed to pull in enough academic scholarship money to be able to attend Clemson this fall with no loans. Now that is an accomplishment! I have to say that it has been a lesson for me as well. She continued to do daily what she could, both academically and in service to a local after school program. She knows that we have made choices that have kept me home and Gary and I unable to provide much of a college fund. God has blessed her. Here is the evidence. (I consider it evidence rather than coincidence) I looked on line to get the estimated price tag on the year at Clemson and see where we stood with what she had in scholarship and gift from family. Total online estimated? 20,200 Total it looks like she will receive? 20,200! Now I realize that there will be added expenses... but how cool is that!

Noah recently turned 16 and is completing his sophomore year in HS. It has been one of those years that has combined the good the bad and the ugly. You know, a teenage year. He is a great kid with a tremendous future wide open for him. He has a passion for life and I cannot wait to see where he goes in life. He is not sure (ie. has no clue) what he wants to do long term, but is pretty sure he wants a soccer ball at his feet for as long as possible.

Mckenna just turned 10 and is finishing up 4th grade. She has had a GREAT year. She loved her teacher, had a good class and has all around enjoyed this year. Well, with the exception of having to get up early every day... She has developed a love of writing and is discovering her more creative side. Mckenna is a great combination of Kayla and Noah.

Ayden Jane has completed the 2's class. I have pretty well covered that, but I had to include the picture below. Mckenna took it at the end of year program for the school. That's our girl!

Busy Family/Noah is 16!

Yesterday was Noah's 16th birthday. He is such a great kid and a fabulous big brother. We did not do too much to celebrate as it is a CRAZY week around here. He had a soccer game last night so we went out to KFC at his request for supper. I know, exciting. We will get to a more formal celebration in the weeks to come.

So, I said it is crazy busy. It is the week leading up to spring break so there are lots of projects... on my kids plates. Kayla is off visiting Clemson today with Gary and soccer continues on. Ayden Jane is doing her best to rebound after being sick, and had pictures and an easter egg hunt at school today.

Kayla and Noah are taking a spring break trip together. It is really great that they enjoy each other enough to decide to just go road trip together. They will be heading out on a grand adventure on Friday to visit friends of ours in FL and surf. It is a long drive, so there is the mom part of me that is a bit concerned for their safety on 95, but I know that it will be a trip they will always remember as they make their way together to places they have never been before. Kayla has already informed Noah that he will be going over flash cards with her as they drive because she has her AP exams when they get back. Yep. They are a wild pair!

Sibling Study Part 1

This will be part 1 of I have no idea how many. We packed in so much in 2 days down there it will take me weeks to process it all. Not to mention recover on my sleep!

So, what happens at the sibling study? You check into the clinical research center, which is basically checking into a hospital. After the mountains of paperwork are signed, you don't stop until the next afternoon! Of course, we were a bit busier than most since I brought 2 siblings. That meant that each scan, test... had to be done 3 times instead of just 2. It just made sense, though, to have 2 sets of data to compare with AJ as long as we were coming. At one point we were going to bring Noah as well. I can honestly say I have no idea how we would have finished with all 3. Likely we would have just had to do 1 of the kids cognitive/learning style... testing after discharge or independently on the next day.

I think the big kids enjoyed, or at least did not mind, the scans and questions and cognitive stuff. They were really interested in everything and learned a lot while they were there. The only test that was hard on them was the 2 hr. glucose test. You know the one, fast all night, drink nasty sweet stuff and then allow your body to completely crash before you can eat again. It was hardest on Mckenna.

The good news about the glucose test is that although AJ crashed very quickly, she did not bottom out like she used to. She has had a heavy sugar load on once or twice and the results were scary. She just became listless an had a really hard time getting herself straight again. This time she did crash faster than the others, but she pulled out of it. It was like by the time the first hr. was done, she had already gotten better. That is a huge relief to me. I feel like now if she does get a hold of something, although it won't be great, she will handle it. (I do have to say though, that today is the first day I have ever seen her sort of crave carbs.) Really odd. Mckenna on the other hand, just got worse for the 2 hours. Kayla tolerated it very well.

So much more to say, but it will have to wait. My brain is no longer functioning.

Cruising Right Along

Ayden Jane is 3 1/2 and, in a way, I wish she could stay just as she is forever. Yep. Felt the same about my others at different stages, but with Ayden Jane the biggest reason is that right now things are easy. The gaps between her and her peers are quite minimal. Food is really pretty easy. She is not tall enough to reach top shelves and is content with the foods she eats. The days of special care nursery and failure to thrive are far enough away that the pain is dull.

So, where are we exactly developmentally? I am sure I will have lots of information on that in a month when we go to Florida for a PWS sibling study. For now, it is sufficient to say that with AJ's fall birthday, she will be in 3 year old preschool class next year and she talks up a storm. Sings several songs start to finish, knows most of her upper case letters and some of the sounds, knows her colors most days, counts easily to 10 and sometimes to 20, recognizes her name.... the basics. I have spent some time in her preschool class and I can truly say that she is right with the average student, just a little quirky and sometimes a bit slow to respond. She has shown, though, that even when she looks a bit 'out to lunch' she is absorbing everything like a sponge. (yep. just like those first months!) She has a tremendous sense of humor and is great at reading tone of voice, facial expression and has an excellent vocabulary with a bit of articulation difficulty.

We still have work to do for sure, but overall things are calm and happy.

So, what about the future? In some ways the unknown about her future is a blessing and in some ways it is terrifying. Knowing that AJ has already redefined what I was told about PWS when she was diagnosed allows me, no forces me, to dream big for her. That is exciting (and, of course a little exhausting) as we as a family will continue to be creative in finding answers to challenges one after another. It is terrifying as I know the 'possibles' or in some ways probables of those challenges. I just have to trust God that He will continue to guide us as we continue on each day. Then again, this is not a new concept that applies just to Ayden Jane! Kayla is gifted intellectually and has an incredible servant heart. What lights her up more than anything is telling me all about the kids she works with in an after school program, or about the girls in Guatemala she is now friends with after her mission trip there. How do we help guide her? Noah is athletic and bright and is a natural leader. How do we help guide him? Mckenna is summed up in Kayla's words to her the other day, "call me when you find something you can't do!" (and yes, it was said with love and meant as a compliment) How, oh how? do I guide this one?!?

The past 3 years have been, because they had to be, soooo focused on Ayden Jane. I am hoping that this phase with her lasts also so I can enjoy the incredible talents and blessings of my other 3 because ALL of them grow up so fast.

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.

Mckenna

Mckenna is 9. She is absolutely amazing with Ayden Jane. She is brilliant and funny and artistic and athletic. She is also, however, occasionally very fearful. It was not always this way. In fact, when Mckenna was a tiny thing she was head strong, afraid of nothing, full of confidence... We saw a dramatic change about a year after Ayden Jane was born, shortly after Ayden Jane was diagnosed. It was a rough year on Mckenna. AJ's first 8 months seemed like we were in a fight that we were going to 'win'. I think most of us saw AJ's troubles as somewhat short lived as she continued to slowly get stronger... Once diagnosed, it was a whole other ball game. I think, for all of us it was like a hard blow on already weakened hearts. We were sad and we felt like we had failed somehow to save Ayden Jane. We knew now it was life long... During those same months, we lost a family friend to cancer. It was simply too much for a 7 year old to realize that Mom and Dad cannot fix everything and that bad things happen to good people even when we pray. Deep stuff for anybody, let alone a second grader.

Mckenna worked through things slowly and we began to rebuild her confidence. The lights were on at night, she started karate... Ayden Jane continued to amaze us and Mckenna's broken heart over her little sister started to mend. I would say by age 8 (third grade) Mckenna was happy and confident most of the time, but every now and again you would see that grip of fear. It was just painful for us to watch.

So, last week, after a soccer practice we were riding in the car on the way home and we began to talk. I don't remember exactly how it started, but we talked about how she is still hesitant to tackle or go for the ball sometimes. I told her she wasn't always that way. She said she remembered, but she just didn't know why she now feels afraid. I told her the story. I told her how she was before Ayden Jane and the profound effect it had on her because she loved AJ so much. I told her I was sorry she felt scared sometimes, that is was hard for all of us to handle and that it was more than a 7 year old should have to handle. that I wished I could fix it for her. Her response, (with a tone of relief and excitement all rolled into one) "so that's why I feel so afraid sometimes! Well, I know now that is nothing to be afraid of so I can stop being afraid!"
The next night as I left her room she said, "Mom, you can leave the light on if you want but you don't have to anymore." Mckenna has been joyful (likely well rested) and positive and relaxed this past week. Oh, and on the soccer field at training last night? Let's just say, she rocked! She was ... free.

Sibling Effects

I have posted before about the profound effect Kayla, Noah and Mckenna have on Ayden Jane and vice versa. I am so proud of all of them and how they have taken on their slightly different roles as big brother and sisters. One common thread is how proud of her they all are. Ayden Jane has an amazing cheering section in the three of them and all three are thrilled to tell anyone, "this is my sister and she is awesome."

All this to lead into a story from Mckenna about a week ago. Gary and I had just returned from the conference to DC and I was chatting with Mckenna before bed. She wanted to know about how Ayden Jane liked it and if she made friends and if people thought she was doing great... I told her that Ayden Jane had made several new friends and that lots of people thought she was doing great. (Mckenna is a little competitive;) I told her she needed to pray for Mom because there are new families that are asking me questions hoping I can help them so that their little ones can do things just like Ayden Jane. I told her I wanted to help and I remember the people that helped me and how grateful I was... We talked a bit and I told her the truth is that I am doing no more or less than lots of Moms and Dads, just that there is something in Ayden Jane that is working a little better. Mckenna did not hesitate for even a second. She looked me straight in the eye and said, "well Mom, did you tell them how many people are praying for Ayden Jane? I know all my friends are."

Awesome reminder from a little person. I just need to keep doing what I can and relax knowing that God is in control. He made her and she is His. Her road is not an easy one, but she will not walk it alone. I still go in circles with why she has Prader Willi syndrome. Okay why it even exists. Okay, why do any genetic disorders or cancer or diabetes... Not sure I will ever get that part of it all, but after a few circles I can look at Ayden Jane and I just know that there is something extra amazing about her. Maybe it being able to see God so vividly because He is at work filling in all the weaknesses. I guess I should go ask Mckenna. She has certainly come through this all with the faith and courage of a lion.