Yes! Again another week down and I lost .6 lbs. Not a huge amount, but still I'm not gaining every other week. I guess everyone was right about it being a plateau. Glad I listened and didn't give up. I gained a new charm this week. The 'Share Your Success' award. It's a cute little snowflake! Also I got another 16 week charm. I haven't been showing these, mainly because I forgot. But they have a new design now. Instead of two hands it's a triangle with the #4 on it. They also gave everyone a new book. It's cool and has some different ideas in it. It's always nice to get new stuff.
I went back up .8 of a pound today. I'm done. I'm not giving up. No, not by a long shot. But I am not going to keep going back up and down like a yo-yo. Starting this next week I'm buckling down. I've also noticed the weeks I've lost I haven't had a lot of bread and I've been eating dinner before 8. So I'm going to focus on those two points and see if it helps.
Especially for me! I lost this week. 1.4 lbs to be exact. Yea, I know, I'll probably gain it back next week. Especially after I have to deal with all the free candy that's gonna flood my house tonight. But it's Halloween, I refuse to let myself be negative.
I'm really not sure where to begin. Alexander--Aj-- was born a perfect little pumpkin. He..yes, he...was the light of our lives. A few months went by, and I knew something was different. It wasn't until he was almost 2 years old that we finally got a diagnosis. It was MeCp2 male....aka Rett syndrome. So I did what everyone does now...went to the internet and researched. I dropped to the ground. I had no idea what to expect. I actually still have no idea what to expect. Our lives were now on a completely different path. We were on a mission to find out all we could about this....but in the process, I was missing out on him. I don't want to say I have given up on finding out information, but I have just been spending time with him...doing things, like playing football, swimming, traveling...then I met crystal and gabby. This was the first family I have met that got it. I didn't have to say sorry about the machines, and I could have a conversation about what our kids liked and our love for minions. Both AJ and gabby have taught me how precious life is and to never take one moment for granted...to get out and experience life and treat everyone with respect and kindness.
I wrote and rewrote this. I've didn't really debate what I
wanted to say, so much as how I wanted to say it. Even now she still she
inspires me. As my condition has
worsened over the past few years I've
lost my mobility and have had trouble communicating. Not only is it frustrating to have one's body
betray you, it's immensely embarrassing to have people assume things about you
when you misspeak or can't speak at all. I have days that I'm sad to say I
refuse to leave the house because I just don't want to deal with it. Honestly
I'm ashamed of myself for it. I can still get about on most days. I can still
talk. Gabby, for most of her life couldn't. But she still loved going places.
She still loved to have people visit. She laughed and enjoyed life.
I'm ashamed because I think if she had suddenly found
herself with my physical problems she would have been overjoyed. To be able to
speak, even if it wasn't always perfect. To be able to sit up on her own. To
read out loud to her mom, instead of Crystal reading to her. To simply be able to hug her mom and dad and
tell them how much she loved them.
Over the past few years, the times have increased when I
really don't want to get out of bed, much less leave the house and I just hide
in my room all day. I turn down
invitations because I'm afraid of doing something off, or worse not being able
to do something I used to be able to. Those are the times I remember Gabby and
her joy for life, even in the simplest of things. I feel horribly ungrateful
for what I DO have and what I am able to do. I remind myself to enjoy every moment I
can. I share Gabby's story, and the
stories of the other Rett's girls and their families that I've been fortunate
enough to meet. I pull myself together and take advantage of
what I can do. I go out because if Gabby,
or any of the other Retts sufferers, could go they would and would love every minute of it. I tell
their stories because I can and I hope that the more people that learn about
Rett's Syndrome the more people there will be that will want to help make a
difference for those who suffer from it.
Ok, this year instead of sharing each giveaway individually at the Readers for Rett's Syndrome Awareness event we've decided to just share a link to this post. That way everyone who is attending can just see all the prizes that we are making available for all to who attend can see them all in one place.
Ok the rule for this year's event giveaways are simple.
-You must attend the event to qualify for the giveaways.
-Anyone who comments on any of the posts at the event or on any of the blog posts for it will be automatically entered in the giveaways.
-Also the more comments the more entries.
-Another way to enter is to change your profile pic on Facebook to the Readers for Retts Awareness Event picture. Once you do change your profile pic on Facebook if you could please comment on here letting me know that you have changed the pic. This isn't necessary to enter any of the giveaways, however it will just make it easier for me to verify it.
-One more way to enter: Invite your friends to the event. I will be posting a status on the event page for people to let me know who invited them. Not only will your friends attending be an entry to the giveaways, but also the person with the most invites will automatically win one of the prizes available.
If you have any questions regarding the event or the giveaways please feel free to ask me or Heather, the other host of the event.
A bag from the InD'Scribe Convention 2015 signed by the authors in attendance.(as well as some who weren't!) Along with an InD'tale T-shirt (size large) and a whole LOT of swag from the convention as well that was also donated by the numerous authors at the event.
Also I want to say thank you to all the amazing authors from the InD'Scribe Conference who donated items to the giveaway! Especially since the books and swag I received at the convention were donated without me even asking. Yes, I asked them to sign the bag. But before I knew it the bag was overflowing with items put in it by the kind authors at the event. Also the wonderful coordinators of the event were willing kind enough to donate the bag as well as the shirt.
This year the event is being dedicated to the girl who inspired the event in the first place, Gabby Jankowski. We will be sharing memories of her, as well as stories of the other Rett's children who suffer from this horrible condition.
As with last year we will also have some amazing giveaways for the attendees of the event. I will be sharing the prizes available here since it's just a bit easier to share them all at once and I will put a link to that post here as soon as it goes live.
For those of you who dont' know anything about Rett's Syndrome here are some quick facts.
What is Rett Syndrome?
—Debilitating neurological (movement) disorder that predominantly affects females.
—Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.
—Caused by a single gene mutation that leads to underproduction of an important brain protein.
—The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
—Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
—As prevalent as Cystic Fibrosis, ALS and Huntington's.
—Another little girl is born with Rett Syndrome every 90 minutes.
—Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.
A special thank you to the Rett families joining us and sharing your stories. You children truly are warriors.
And a final thank you to graphic designer Zackary from Raven Tree Design for donating his time and creating the graphics for the event.