22 Years

Yep. Yesterday marked our 22nd anniversary. We did not really celebrate, but we will eventually. Just sooooo much going on right now. Gary will work through Monday night then he is off until the following Sunday. During that time we will get Kayla off to college, celebrate her 18th birthday and the 3 other kids will start the new school year. We are 'giving' each other a major spring cleaning, bedroom (at least something in all 4) redoing, closet cleaning out, we have been in one house long enough that we need to throw half of what we own out sort of 2 weeks.

I am so excited. I keep threatening to rent a dumpster and fill it! Don't get me wrong, most of what we own is second hand... so it is not do to over shopping. We have just spent so many years just getting by and collecting, well, things others no longer had use for but we were thankful for. We have been in this house for 15 of those 22 years and I think there are closets I have not seen the back of since we moved in. YIKES!!

Anyway, the cleaning house includes Ayden Jane getting a room of her own. I am not sure if she or I am more excited! Okay, I admit it. I am more excited. She has been sleeping in our room, which is not really a problem, but her toys are EVERYWHERE throughout the house. Ayden Jane is also ready to have a place to play. She disappears into Mckenna's room from time to time now, but I am thinking when it is all hers she will really love it. Mckenna and Kayla will share a room, but with Kayla away at college it shouldn't be too tough on either of them.

So, 22 years of marriage and we have one who has successfully made it to adulthood, one in the throws of teenage years, one preteen and little AJ heading off to 3 year old preschool. Yes, you may laugh now. Looking back, I can remember the days before kids, with our 2 little ones, then as they grew and we added sweet Mckenna. It seems both so long ago and yet just yesterday. Now, with our home full to the brim with entertainment, energy, love... it is hard to imagine life having taken any other path. Here's to a wild ride of the first 22 yrs. Hopefully the next 22+ will be as filled with good times, blessings and laughter. I'm happy to skip the heart ache, but willing to accept it as part of the ride and thrilled to know that our little family will hold tight to God and each other and triumph through it whatever comes our way.

Will Sugar Break Me?

Ayden Jane has been asking a lot of food questions lately. Not in a hyperphasia sort of way, in a very appropriate sort of way. She is just really curious about why she cannot eat sugar or bread... and some people can. We talk a lot of how we eat food to make us grow strong and healthy, and sugar and bread does not make her grow strong and healthy. So, the other day she asked me, "will sugar break me?"

Hmmm. Tricky question to answer. In a way, those things would 'break' her if given frequently... I, on one hand, don't want to feed into the anxiety that is often part of PWS and have her flip out if she gets a dose of sugar. I also don't want her to have a cookie, not explode and then decide that all she has been told is a lie. It's just not that simple. I have seen the effects carbs from grains and sugar have caused. She becomes slower. Slower thinking, slower moving, just over all slower processing. (of course, she has only had a dose of these on rare occasions). Then that question is followed up by, "will sugar break Mckenna?"

So, what do I say? I told her that those things would not 'break' her, but they would not make her feel good. That she would not be able to run, jump, think or talk as well. That she would not have as much energy. I feel bad, but there is a part of me that hopes she feels awful the first time she sneaks a cookie! We talk about how she eats, including the fact that she has to eat a few bites of something with protein. There are still times that I have to insist she eat! I am glad about them and use them to teach the need to keep our brain and bodies fueled. She gets it. The other day she came and told me, "my belly isn't hungry but my brain needs a snack." We talk about food that will make her brain and body work best.

We also talk about learning to say our words better and getting new 'yellows' (orthotics) for her shoes to help her legs grow strong and make her run fast. I still have not used the term PWS to explain why all these things apply to her, but no one else. For now, she accepts that mom says that's the way she is made. The time is coming but I hope that when it comes, it will just be a name for what she already understands about herself. She is daily understanding that food is for fuel, exercise is necessary for fun and for feeling good, working hard at things means mountains can be climbed, family will be there every step of the way, supplements and shots are just a part of life like brushing your teeth... and a host of others.

Definitely wondering how that conversation will go. I am sure as she grows she will go through times where she accepts PWS and times where she sort of rebels against it. I just don't want her to ever let it define her. She is Ayden Jane, a unique, funny, high spirited little girl. That is what she will always be first. I want PWS to just be a foot note in her life. You know, by the way, she eats a little funny because of this thing called PWS.

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.