Huntington’s Disease

To say that the past year and a half has been tough would be an understatement.  Our entire family has struggled to come to terms with what the future means with a Huntington’s Disease (HD) diagnosis.  In just over a year our family of 5 has gone from a normal, happy life to one where we need to think about things people in their 30s and 40s shouldn’t have to think about…like social security, disability and long term care policies.  We thought we’d watch our babies grow up together but that’s no longer a reality.

For those of you who don’t know about HD, or have never even heard about it, this disease causes the progressive breakdown of nerve cells in the brain.  It deteriorates a person’s physical and mental abilities and has no cure.  That’s right NO CURE!  It has been described as having ALS, Alzheimer’s, and Parkinson’s Disease all at the same time.  Patients struggle with personality changes, mood swings, depression, forgetfulness, and impaired judgement.  As things progress they will develop an unsteady gait, involuntary movements (known as chorea), difficulty swallowing, and slurred speech.  Each child of an HD positive parent has a 50/50 chance of inheriting the disease, but if that child doesn’t inherit the gene they will never develop the disease and cannot pass it on to their children. This means that each of our 3 kids have a 50% chance of the same fate.

When Mike first approached me to say he was having symptoms I was not expecting it at all.  I always knew that it was a possibility and deep down I felt like it was going to happen at some point but I think you push things like that out of your mind and even though looking back there were signs, they were overlooked.  I had no idea how much this disease would impact us and really had no idea what the whole disease was about.  I had watched my father-in-law progress through this disease but by the time I met him he talked only a little and could still eat and walk.  I never could have imagined the cognitive deterioration and psychological changes that would be encountered in the early stages of this disease.  In hindsight, the symptoms started many years before his diagnosis.

In the past year I have watched my able-bodied husband go from working full-time to not being able to work or drive at all anymore.  I had no idea it would progress this quickly. His cognitive skills have declined to the point that he can’t learn a new job that isn’t as taxing on his body as welding, which is what he did for the past 20+ years.  His brain gets stuck on a subject to the point he can’t let it go and it becomes an obsession.  There has been lying, deceit, and battles with myself and my children that never would have happened in the past.  The battles with our kids are generally over trivial things and his patience level is low when dealing with them.  I mean, I will be the first to admit that I don’t have the highest patience level but he used to be the patient one.  It is difficult for our kids to watch the decline of their dad and to understand why he behaves the way he does at times.  To the outsider he seems like the same old Mike, but living with him every day it is easy to see the changes and difficulties he encounters.

The cognitive decline has been very difficult to deal with and to watch.  Mike struggles with simple instructions, asks you to repeat things frequently, and constantly forgets things.  He can ask the same question 3 times at supper and have no idea that it’s already been discussed.  He used to make fun of me for making so many lists and he’d tell people that I had ‘lists for my lists’ (which is quite true) but he is now realizing the benefits of those lists and makes them frequently to remind himself to do things.  We saw an Occupational Therapist (OT) to help him with strategies to make things easier for him at work, etc and I felt so bad for him as the OT in training was going over all the tips and tricks he could use she came to the end and asked him which of those things he could use to help him…but she didn’t realize the irony in asking the guy with a short-term memory issue to recall what had been discussed and relay information from the discussion.

Mike’s physical decline does not seem to be progressing as quickly although he definitely struggles with the chorea because it sometimes keeps him up at night and makes it difficult to get to sleep.  His struggle with sleep has affected both of us and I have chosen to move my bed to the couch because it was becoming a vicious cycle.  Him waking up and struggling to get comfortable which woke me up and then he’d be afraid that he was keeping me up so he’d get up and go watch TV in a different room.  This meant that neither of us were getting enough sleep so it was just the simple solution.

This post is not meant to evoke pity but rather to inform the world of this awful disease and let others know that they are not alone in this battle.  It is not a journey that can be traveled alone and there are many wonderful people who have been there for us along the way already and I know many will continue to walk this path with us until the end.  I hope that at least one person can read this and find comfort that it’s not just you here battling this disease and feel a little less alone because it is a lonely battle but it doesn’t have to stay that way.

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Pink & Gold Princess – First Birthday Party

Since my last post we have a beautiful baby girl named Charlotte and we celebrated her first birthday today!  The party was a smashing success!  It is very different getting to throw a girl birthday party and it was so much fun to plan!

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I used this tutorial to make the banner with her name.  No fancy cricket machine needed.  The letters are stickers so the only thing that needed cutting was the pink banners which I had some help with…thanks Trudy!

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This chalkboard was quite a bit of work but it was SO much fun to make.  It’s a great way to remember all the things my baby girl can do at this age.  I used this tutorial to make it.  Instead of tracing everything on the window like she did i just pressed gently and made indents on the board.  Once I had traced the full word I used the paint markers to trace the word.  I also used my printer and printed out all the words I put on the board because I don’t have that neat of handwriting!

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I made these pom poms based on this tutorial.  I would highly recommend using the amount of tissue paper suggested in the tutorial because I didn’t on all of them and they didn’t turn out as full as it would have if I’d followed the instructions.  You can see in the picture that the gold pom on the left is more full than the others.

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I used this Wilton candy mold to make the crowns for the cupcakes and then dusted them with pearl dust.  They ended up being so cute!

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TUTORIAL: Duck Dynasty Cookies

Anyone who knows us knows how big of fans we are of Duck Dynasty on A & E. Especially my boys who think it is hilarious. So both of them requested Duck Dynasty as the theme for their birthday parties. Now while I didn’t get time to do all the fancy decor as in past years I did manage to make some pretty adorable cookies for birthday treats. So here’s how I did them.

I used a Frankenstein head cutout I got from a Wilton Halloween set a few years ago. I turned it upside down because to me it looked like a face with ears and a beard.  You can see my original plan sketch.

Duck Dynasty Cookie
Duck Dynasty Cookie

I used my Sugar Cookie recipe to bake the cookies. I started by doing the face part because it will need to be behind the beard.

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After I filled in the face and let it dry I started outlining the beard.

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Once it was outlined I filled it in.  Then I waited til it had dried a bit and scratched it vertically with a butter knife.  I wanted the beard to have some texture and this was the best way I could think of.  It worked out well I think.

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Because I was doing a representation of Phil Robertson and he wears a camo headband I next outlined the headband.  When I filled in the headband I used two colors of green and a tan.  I put spots of each of them within the outline and then swirled them with a toothpick to make them more camo-like.  I forgot to take a picture of that but you can see it in the final pictures.

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The final step was to add a face.  My boys thought that my orignal sketch looked like the eyes were closed so I decided on dots instead.  The nose was tricky and I didn’t get them to all be uniform but I am happy happy happy with how they turned out.

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You can see the noses were all a bit different but it works!

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Hopefully you will be inspired to create your own Duck Dynasty cookie.

Broken Hearted

My heart is broken!  My youngest starts kindergarten tomorrow and this year the boys are walking to school.  I have practiced their route with them and they are meeting some other kids down the road so they can all cross the busy intersection together.  I was set to walk with them to school the first day because I want to be there to send Avery off but he doesn’t want me to.  He announced to me just before his nap today that ‘they are big and don’t need me to come with’…sob!  Then I said I would just meet them at school so I can say goodbye and he said ‘no’…sob, sob!

I kinda figured that he would change his mind as the day wore on but he insisted I not walk along.  I changed my strategy a bit and told him that I am his mom and I only get to do this once in his life and I was coming.  He’d have to deal!  He gets the rest of the year to be big and not have me with…and I’ll let them walk home alone.  That seemed to ease things a bit.  Nothing more was said and I just let it go.  I tucked him into bed and hoped he fall asleep fast (not something he is known for) but soon heard his little feet coming down the steps to find me.  He then started the tears that they are big and he doesn’t want me to go…boo-hoo!!!  I just said we’d talk about it tomorrow before school.

I have a feeling mom is going to win this one.  I just wish he didn’t want to be grown up so bad.  Or that he could at least pretend to need his mommy still.  I didn’t think I’d cry dropping him off but if he shuns me I just might:(

Pinterest.com…my latest obsession!

I had briefly checked this site out after hearing about it but didn’t understand all the wonders of it until my brilliant friend Rachel shared with me how wonderful it is!  I was having a chat night with her and asked her to show me how it works.  It is a wonder of organization and inspiration.  I look at it as a ‘favorites’ page with pictures.  Pinterest allows you to ‘pin’ your inspiration to your ‘board’ (which in my mind is like a bulletin board) so it is organized and easy to find.  The great thing is that you can choose which picture you want it to show when you look at your board so you know exactly what it is that you loved about the idea.  The idea behind it is to share inspiration with others so you can also see what the other Pinterest members are in love with.

Currently you need to have an invitation to get in but it is so worth it.  I can’t even put into words how awesome this site is and how many hours that i will be spending on it but I have already found SEVERAL awesome ideas for my boys’ birthday parties and can’t wait to find more!

 

Google Reader

I just finished reading through 133 new posts from 25 different blogs that I follow.  I used to try and go to each one every day to see if there was something new.  It ended up taking me forever!  Then a couple friends introduced me to Google Reader.  It is a feed that keeps tracks of all your favorite blogs for you!  It only shows me when I have a new blog post to read and they all stay neat and nice in one spot for when I have the time to read them.  Mine shows up on my home page on igoogle.com and it is right there everytime I open the internet.

If you don’t us a ‘reader’ I highly suggest it.  I know there are other ‘readers’ out there but I strongly urge you to find one that works for you!  It will save you so much time!

My Creative Child

Yesterday after school Blake came to me and asked to use the glue.  I told him he could if it didn’t make a mess.  Then he came and asked if he could use a scissors too.  I said yes but questioned what he was making.  He just said ‘something for dad’.  Let me tell you what this child can do with paper, markers and glue is amazing sometimes!  Just before supper he came back upstairs with this:

It is a paper Target Field.  You can’t see it well but it even said ‘Target Field’ down low behind home plate.  When Mike asked if he made something like this at school he said no he just decided to make one.  This kid is going to make some money some day with this talent.  I am great at copying ideas that I see but I am not one to come up with things on my own!  I am so impressed…maybe he can invent something someday and let his momma retire:)

New Name

>I have been wanting to change the name of my blog for quite some time and since a friend of mine told me that WordPress is the blog site to be using that gives me a great opportunity to make a new name that isn’t so personal for the blog.  I like when people use something in their life to create a name for their blog so I’ve been toying with a few things…

Charles Ave – the street we live on
Hockey Mom – a big part of my life but it is also already a blog name
OCD – something I struggle with in my life (not a major case just very particular)
Red House – the color of our house
Mother of Two – how many kids I have

There are lots of other factors of my life but those are a few that I’ve toyed with so far.  I know some of you are very creative…what are your ideas?

20 minutes…

>Last night I had 20 minutes in a quiet house with no one but myself!  The boys had gone to hockey with grandma and Mike wasn’t home from work yet.  I wasn’t quite sure what to do with myself.  It wasn’t enough time to start a project so I ended up surfing facebook for a little bit and then washing dishes.  It was a peaceful 20 minutes but I wish I would have chosen to sit down and relax by reading a book or something but things need to be done.

What do you do with 20 minutes?