8.25.2014

summer please do not end!

 I am so sad that it is almost Labor Day because I am not ready for my summer to end!  I am having the best summer, I have truly been happy!

I have been so many places this summer; Kansas to see my friends, Kentucky for the HDSA convention, Marco Island to see family friends, the cape, and Prudence Island. 

I have had countless pool and beach days with my family. 

I watched my cousin get married, had a surprise 24th birthday, became a godmother to baby James, and my sister moved here, went to a Red Sox game, and Zac Brown.

Although I am sad to see summer end, I am for ever grateful for all the memories it holds.  I will always remember the summer after I was diagnosed with HD as being the best one yet. I took full advantage over each aspect Summer has to offer. I don't know  how many more times I will
 get to experience all the things I did this summer due to my HD getting worse. 

But I also have so many things to look forward to in the
 fall; the Boston Team Hope walk,my friend Travis coming to see me, another Kansas trip, and a Florida trip.

But this summer will always always hold a special place in my heart.

As always thanks for reading,
Alexandra 



8.18.2014

My 24th Surprise Party!

My mom and my sister are really great liars :) After slipping something out in front of me on my birthday, a few hours later I asked what was going on Sunday, and I was given lie after lie, and I sure believed  them.

So on Sunday after family breakfast,  my mom told me she was going to see  my stepdads Mom, while she really got ready for my party. My sister and her  boyfriend took me to IKEA and Target to get me out of the house.

As we were pulling up I saw all the cars, I immediately knew and my heart stopped, and  I was crying, saying omg, I need to change over and over. My mom and Liz knew how important my family is to me, that I wanted to celebrate birthdays while I still can, and how I wanted to celebrate the good days despite HD, and they made that happen.

My family was all hiding in the garage, and then when the door opened they all yelled surprise and happy birthday, and I cried and cried, gave my mom a big hug, my grandparents, my babies, and cousins. My cousin Melissa yelled, we all just love you so much,  it was just a really special moment for me.

Later as they were all singing happy birthday to me, we got the most beautiful picture with every one who loves me, supports, and celebrates me and I had my godson in my arms, I just lost it again.

I was really touched by all of the VERY generous gifts I received, but the greatest gift I received  was them all being there to celebrate me, and all the good, and the bad of my HD,.

What  a day?! Happy tears sure was a trend, my Nana and I sure cried a lot, and she kept telling me just how blessed I was to have all this huge family support me. They are my people.

What I keep thinking about today, is that any concern that my mom and Liz can't truly grasp my HD, is gone. They get me, they know my struggle.

8.13.2014

My family are my best friends

One thing that I have learned in my HD journey is that my family really are my BEST FRIENDS.  They are always saving me in one way or another. This included their spouses; we welcome them as if they were our family.We have all become  closer with the challenges that my disease has forced us to get through.

I am always always always choosing to spend time with my family, and I could not be happier when I am with them. We are always seem to have some family event, where we are celebrating some one, and then their is our weekly Sunday breakfasts. Sunday is my favorite day. We also have our beach and pool days.


Yesterday, as I was helping my cousins wife Katie,who I
 consider  more like a sister in law, with my god son, and my 18 month old niece, I had one of those perfect moments. As I
 was feeding my two week old god son, and he kept falling in and   out of sleep in my arms, I almost lost it with happy tears- I had a moment where it all felt so right in the world, where the HD did not matter if I could have moments such as this one. I thought to myself how can my cousins baby mean so much to me,but he does, and they all do. I love their parents for allowing me to be such a big part of all their little lives.


My family is my biggest supporters, my biggest advocates, and they will  be walking for a  cure of HD in September. To donate to the  HDSA Team Hope Walk click Here

My words will never do justice for what my family means to me.

Never alone,
Alex 




8.11.2014

So in love love with my summer

I am so sad to say this summer is flying by!

This summer has truly been one of the best summers I could ever ask for. I am grateful for the small things, and  I have been living in each moment. I have been enjoying my summer so much.

One highlight of this summer has been I have been seeing my Dads family more and more. It is amazing- it makes me feel more connected to my Dad. I love them so much. They are just as great to me as my moms family. They are constantly picking me up, bringing me to dinner, and having me over. Just one more group of people to support and love me through my HD.

Another highlight of this summer is baby James being born, and my cousin James and his wife Katie asking me to be his god mother. It is the greatest honor. Being baby James god  mother  means everything to me. Thanks James and Katie!

I hope you are just as in love with your summer as I am.

Alex

8.06.2014

Huntingtons Disease e course

I have created an HD online e-course.


HD is not a rare disease, but a rarely known disease.  My goal is to be an advocate and teacher of HD.

In this course you will learn about my journey with HD, how I strive to find joy in my struggle, and continue to choose joy and happiness. 

You will also learn about what HD is, genetic testing, the HD Parity Act, advocacy, clinical trials,  treatments, and what you can do to find  cure.
To enroll Click here

Hope for today,  Help for tomororw.
i would love to have you along for my journey.

Thanks for considering.

Alexandra