Hello Friends and Family,

It’s that time of year again. A time to celebrate those with Angelman Syndrome and help bring us one step closer to discovering a cure! Our family is heading to Salt Lake City again to participate in the Angelman Syndrome Foundation National Walk on May 17^th.  This is a great opportunity for us to celebrate Ridge and all of his remarkable accomplishments this past year. Each and every day Ridge continues to amaze us with the things he is learning.  From learning to sit-up, to crawling, to dancing in weddings in his walker Ridge continues to demonstrate there is no milestone that is outside his grasp.  In addition, he has developed a magnetic personality that makes us smile every day.

When looking at Ridge’s numerous achievements in such short amount of time, one can’t help but draw parallels to what has been accomplished in Angelman Syndrome research. This disorder has been named, the underlying genetic issue discovered, and remarkably it has been cured in a mouse model. The pace at which this set of events has occurred is a world record by medical research standards, but for progress to continue, additional funding must be raised.

This year we have decided to raise money for the Foundation for Angelman Syndrome Therapeutics (FAST).  We were fortunate to have been able to participate in the FAST Global Summit this past December and it was an outstanding event.  This foundation’s goal is 100% focused on funding research projects that may someday change our son’s life.

So, we are asking our friends and family to again please donate to the cause if your heart so moves you, read and learn about Angelman Syndrome, and then spread awareness, because awareness leads to funding, and funding to a cure.

 

Click HERE to support team Ridge! 

I made it......

I made it past the 1 year anniversary of Ridge being diagnosed with Angelman Syndrome. As I think back and remember that day, most of it being a blur, but I do remember the thoughts going through my mind.

I remember thinking......

how can this be happening to me
my life will never be what I dreamed it to be
how can I take care of an adult that is handicapped
there is a chance he will die
what will this do to Rory's life
how is Matt going to handle the news
what will happen to him after I die
where will I be when he has his first seizure

I wasn't sure what I was supposed to be feeling or thinking that day, but the perfect life I dreamed of was GONE.......

OR was it?

Over the past year I have been very lucky to get to go to Salt Lake for the National Angelman Walk, Chicago for the Annual FAST Gala and connect with people all over the world through FB. They have shown me that life is enjoyable when living with an angel. That life with an angel isn't all bad. People living with Angelman Syndrome are amazing and make the world a better place.  Ridge is showing that to me regularly these days. He has really started to bloom. His personality is coming out in full force and I am privileged to get to be his MOM! I can't wait to see what great things he is going to do in his life!

One year later these are some of the thoughts going through my mind.....

who else will this journey have me meet.
what will it be like when they find therapeutics to help these kiddos
what's the 1st vacation am I going to take Ridge on
what fundraisers can I do to spread awareness and raise money towards a cure
how many people are going to be touched by Ridge's amazing smile
Rory will have an amazing experience to teach her the importance of life
what is my next travel experience Angelman Syndrome is going to send me on

One year later I can finally say I am excited to see what direction my life is going to go. I am back in the game of life and being a mom. I am excited to start dreaming of the future again. Because the future looks BRIGHT!


Don't forget to wear blue on FEBRUARY 15th to celebrate INTERNATIONAL ANGELMAN DAY!

Please visit cureangelman.org to learn more about AS or give a donation!

Loving life!

So pretty!

On the move (slowly, but surely)

Great day with Rory!

                                                     Such a big boy sitting up drinking!

Hungry

Is it bed time yet?

      It is amazing how fast time goes by when you get into a rhythm and go day by day! Life has been busy!  It's not always easy, but who's life is? We have our challenges, but there is definitely more ups than downs.

      Ridge is becoming his own little person. It has been really neat to watch his personality come through. He will get your attention and then smile while looking deep into your eyes. It is definitely easier to be with him, than away.

     Being with Ridge everyday it seems he isn't making much progress, but when you go back and look at his goals from just a few months ago he has passed them and moving onto bigger things. It is exciting to start to see all the things he CAN do and think about all the things he WILL do. When we first got our diagnosis I was hung up on all things Ridge won't do and all the things he will struggle to do. And let's be honest here, all the things I was going to miss out on too. I didn't understand how people with older angels went on and their lives be ok. It hasn't even been a year and I am defiantly starting to understand.

     I have become connected with the most amazing people through the internet. Thank you Mark Zuckerberg for creating Facebook! These new friends have shown me living with an angel is not all bad. It can be rewarding, funny, creative, and most importantly, loving.

     In just a few short weeks Matt and I get to meet these inspirational people. We are headed to Chicago for the annual FAST Gala. While in Chicago we will get to socialize with other parents of angels, listen to the new exciting research being worked on by the doctors and scientists devoted to Angelman Syndrome and have one night where we can forget all of the heartache and kick our heels up. I am not sure what to expect. I am not sure if these feeling inside are excitement, nervousness, sadness or luckiness?!?!?! So, stay tuned for the next blog where I will share my experience of attending an event I would have never imagine I would get to be a part of.

Happy Thanksgiving!!

 

 

  

Making Memories

Ridge's 1st birthday has come and gone and even though it was an emotional day, it was one of the best days of my life. His birthday was better than I could of ever imagined. The day started out with doing the National Angelman Walk and ended with the Ridge eating his birthday cake (something I never imagined he would do) and watching him squeal with delight while taking his first dip in the pool!

 

 

 

 

 

 

 

Even though this isn't the life I had planned for myself. Each day that goes by I am realizing that I CAN make it what I always dreamed it to be. Ridge's 1st birthday showed me that life is ok. That we are doing what we always planned and more! I never thought I would have these experiences or get to meet the wonderful people I have and will continue to meet in the future. Ridge might not grow up doing things like most kids, but he will do the things that bring him joy and in return that will put a smile on our faces!

 

Matt and I would like to say a BIG thank you to everyone who walked and donated for TEAM RIDGE. We made quit the appearance in Salt Lake when we showed up all the way from Montana with  25 people and over $9,000.00! I can't wait for next year. Heck, maybe I'll start a walk right here in my hometown!!

 

 

 

 

 

TEAM RIDGE!

    
      If any of you know me well, you all know I started planning Ridge's 1st birthday before he was even born. Over the last 5 months I have been feeling anxious knowing he wouldn't have a typical 1st birthday. The kind where you get your kiddo their own cake and they dig in, make a big mess and everyone laughs or where you just know they are about to take their first steps. I have been worrying and trying to picture what his big day would be like. Well, as they say, when one door closes, another one opens; and I am sooooo excited to open this door. The National Angelman Syndrome Walk is on Ridge's 1st birthday. Coincidence? I think not!!!!

     It started out as just an idea about heading down to Salt Lake for the walk and before I knew it we now have a team of over 20 people! Once again I am blown away with the love and support for Ridge.

     So, I ask something of you all.  Please donate to the cause if your heart so moves you, read and learn about Angelman Syndrome, and then spread awareness, because awareness leads to funding, and funding to a cure.


Click HERE to support team Ridge! 


Thank you!

 

 

 

They love each other!

Loving all my Easter loot!



 

 

I rolled for the 1st time on Easter!

Hunting for eggs.

" I get by with a little help from my friends"

      It has been a little over a month since we received the diagnoses and I would say we are doing pretty well! Ridge is finally healthy and starting to learn new things. He has learned to feed himself crackers and hold his own bottle. He also has discovered his feet, which he thinks are soooo cool!!!! Ridge also finally started to babble. Music to my ears.

 

 

  Speaking of music, The Beatles said it almost perfectly when they sang, "I get by with a little help from my friends." I would also add family to that. Matt and I are truly touched at the love and support we have received. The regular phone calls checking in with us, the inspirational text messages. The meals brought over while Ridge was in the hospital. Our families who took many days off work to take a shift and sit with Ridge and took the time to entertain Rory. The visitors who came to help pass the time while we sat in the confined walls of our hospital room. I will never look at my mailbox the same. I will be having an awful day (usually crying in the car) and I will pull up to the mailbox to find cards saying someone is thinking of us; or gifts with an inspirational story. I will run into someone in the mall and they will give me a hug or hold my hand or just give me that look! All of these things makes me feel like this will all be ok. It helped me push through the worst month of my life. So, THANK YOU, to all of you!!!! It truly will take a village to raise Ridge and we are lucking to be a part of one!

Rory and Ridge watching cartoons together before bed

 

 

Easter bunny breakfast

March comes in like a LION...

We had been home from the hospital for 5 days and ended up in the ER Saturday night. Ridge had a fever all day and was screaming non stop, so I decided it was time to take him in. Now he has an ear infection. I hope this little guy can catch a break, so he can get his strength back and start smiling again!

Over the past month,  Ridge has seen numerous doctors and nurses and I am amazed at how many of them have never heard of Angelman Syndrome. I have decided it's my job to teach our small town all about AS.

So, with the use of this blog and being out in the community I hope we can educate people about Angelman Syndrome and help them understand that its ok to have a son with disabilities.

Matt and I have decided to not let this diagnoses change the way we raise our kids. We still plan on helping our kids be the best the they can be and to be positive role models in society.