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.

Feet

So, school is starting soon and that means it may be possible to get a pair of shoes on Ayden Jane. Last years shoes are finally too small. I know, count the blessings of PWS as they come and not going through tons of shoes could be one of them. It is, however, time to get some new shoes to head back to school in. After all, they do require them....

Her old shoes, affectionately known as her 'jump highers', have an orthotic. I am not exactly sure if there is a name for her particular one, but we had Mr. Alan custom make them for her feet. I pulled them out and asked Jen, our PT (life saver), if we were going to continue with them, get new ones or if we might possibly be done with them?

Jen had Ayden Jane stand barefoot (as she always is...) without them and then stand in them. Ayden Jane definitely supinates (sp?) her right foot and pronates her left foot without them. Not horribly, but enough to benefit from some correction. When Jen had her stand in her orthotics, she felt that the supination was corrected well, but the pronation definitely needs more support. Ayden Jane has broken down the old ones in that area...

End result? We have an appointment with Mr. Alan on Tues. to see what he thinks. He may be able to sort of rebuild the old ones, or he may make molds for some brand new ones. Either way, Jen is thinking this will be her last pair! Yay. The really nice thing is that Ayden Jane is only to wear them part of the day so that she can continue to work the intrinsic muscles in her foot. Soooo, wear them to school from 9-12 and then maybe for a bit in the evening. No pressure and naturally an easy balance of shoes and barefoot.

Swimming Fun

Well, this pretty much sums up half of our summer. The other half has been at the beach! I will do my best to get some video of that as well.

In this clip, Ayden Jane is swimming away from Mckenna who is 'it'. It is AJ's version of sharks and minnows... Ayden Jane is so proud of the fact that she can swim in the 'deep deep' (9 ft.) that I think she wears everyone out swimming back and forth. It is too cute when all the kids are in playing games and she is so sure she is playing too.

Pictures from our Trip - Thanks Kayla

It was a looong car ride, but Ayden Jane was great.

The back seat got a bit crazy at times:)

But generally found ways to keep entertained.

There was lots of time in Texas to play with big brother Noah.

Yes, Ayden Jane LOVES this and no one can launch her like Noah. (Look close and you can see Mckenna's legs)

Love this picture!

And Noah loves his baby sister

Kayla and Ayden Jane taking their own pictures. So that's how the photographer gets in the picture!

And oh, so much swimming fun thanks to Uncle Ken's hard work on the pool.

What DO you say?

This has been on my mind for a long time, but I have had a hard time finding words. Well, words that don't sound a bit mean or something. Recent tragedy in the life of good friends just brings it to the point where I just have to try.

Rotten things happen. Sometimes, life sucks. The unthinkable becomes reality from time to time. No one gets a free pass, but in most cases we find ourselves on the end of wanting to help the person in crisis but having no clue what to say or do. I know that's the case for me anyway. I am, quite frankly, not good with words. Well, words, in person, when emotions are involved I am just plain horrible with. I do not have the gift of coming along side and comforting.

When Ayden Jane was born and then even more so when diagnosed, well meaning people shared their sincere words of compassion.... They landed, often, on my heart as well intended but entirely irritating. Sorry, I am not trying to offend, but honestly, if one more person told me that it was because Gary and I were such great parents that God chose us for the responsibility of AJ, it was going to get ugly. Another favorite, we were perfect for her because I was a special needs teacher. Then there is always the, "just be glad it isn't worse."

I could go on, but the point of this is to try to offer insights from someone who has had the unthinkable happen. First of all, in the case of rare genetic disorders or I would presume any illness, take the time to learn. It is such a relief to talk to anyone who has a clue what I am dealing with.

The second biggest thing is that I loved the offers of help. Problem was that most of them came in the form of, "tell me if there is anything I can do." But when I was in crisis, I didn't really even know how to ask. You just get through each day one moment and a time and asking for help requires planning which you just don't have the energy for.

So, hopefully I have not offended anyone of the awesome people that were here to help us. Just wanted folks to know to spare a few the platitudes and allow your friends to feel life stinks. Make your words let them know that you agree life stinks and you will walk the rough road with them, long term. And, probably more near and dear to my heart, be specific in your offers for help. When a friend is in crisis you may be able to see needs that will come better than they. They are in day to day mode. Don't say, "I would be glad to bring a meal sometime, just let me know." Say, "for the next month I will bring you a meal every Wed." Call when on the way to the store and ask if there are a few items you can get for them, then pick up a few extra things just because. Don't tell them to call you if they need someone to watch the kids, tell them that you are free on Thursdays and would love to have little Johnny come swim with you. Tell them Monday is laundry day so you will be by to pick up a few laundry baskets... You get the picture.

PWS Family

Often times when we are connecting online... the families who are affected by PWS often refer to themselves or are referred to as one big PWS family. There are some definite things that cause us to feel like a family. None of us asked to be a part, just like we are born into our own families, we were born or are related by birth into the PWS family. We are connected, like it or not (and by the way I have to say I have loved getting to know our PWS family!).

Just like family, we are closer to some than others, but we deeply feel the pain each other suffers and we love to rejoice in each others triumphs. It amazes me how hard it is to hear that a little one is struggling with hunger issues, scoliosis, behavioral issues... you name it. Not to offend my friends who have all typical children, but seriously, it is ridiculous how it pains my heart to hear of the struggles our PWS kids. On the flip side, it can make my week to hear about how a little one finally has thrown aside his walker and is daily transforming into a full time, gettin' into everything walker. (Go Dean!)

I find myself a little bit addicted to cheering these kids on, praying for them, doing what we can to raise money for research. I sometimes wish I could just travel around and visit all of them. Since that isn't happening, I will just continue to enjoy pictures, stories and the connection we have walking this crazy journey.

So, to all those of you who are part of this journey because your personal family has been touched by PWS, I will be cheering for you! For all of you who are walking this journey with us simply because Ayden Jane has stolen your heart BLESS YOU. We can use all the help we can get.

According to AJ, All is Good

So I think I am ready for school to start back. I have thoroughly loved the summer days with no appointed times or schedules... but I am ready for a schedule. Ayden Jane is getting 'antsy' with the same old stuff we do and is getting into everything as a result. She has come out of this last little developmental spurt so funny and full of energy and life. It is wonderful and exhausting!

Today we picked up the house and then went surfing and to the pool. We left about 12:00 for the beach and did not get home until about 3:45. Nearly 4 hours of swimming! Ayden Jane took a little nap with Daddy for about 30 min. and then we went to the mall to do a few things. She was literally running up and down the mall giggling with glee. She never wears out.

At home she is getting more and more independent. Well, if that is possible! She wants to get her own food, wear sweatshirts in 100 degree weather, climb the shelves if the mood strikes. She feeds and waters the dog each day and honestly thinks she is helping when we wash Sadie and give her hair cuts. AJ just has her own opinion about EVERYTHING. And is sure there is nothing she can not do. I know that her spirit and determination are a big part why she is doing so great but at times I just want her to get into the car seat the direct easy way and let me buckle it!

She has been adorable lately, however, with asking about why God made her. She has totally latched on to the fact that she is special and loves to ask what makes her special. Then she goes through our family asking about why they are special and how God makes every body different and special and why.... Then she usually switches gears to why we have a big family and how lucky she is to have a big family and how Daddy loves her and Mommy loves her and Kayla... you get the picture.

I guess I see why she is such a positive, confident little kid! She knows there is nothing she can't do and that she is special and everybody loves her. Wonder if that will stick through her teens.