Sunday, February 14, 2016

Today is Valentine's Day, yes 2016... every once in a while I feel guilty that I can't keep up with our blog and think.. I should write something. My job, a typical 4 year old and Maisie now 6 keeps me on my toes.

Tomorrow marks the International Angelman Syndrome day! The one thing that I do consistently is create a video every year for AS.





The hardest part for me is this time of year, the time where I watch what other kiddos are doing, what the research has in store... it is the reality of what we all live with every day. Another annual event for us is the FAST Gala in Chicago every December. This year there was a great video of our angels... 
I pray that God will let us hear Maisie's voice again. Although Maisie is become more versed with her communication device I want to hear her voice, more than just a hum, words. This year we were blessed with a 'Make a Wish' where we went to Disney world last month (Jan. 2016). It was amazing!!! The hardest part is Elsa, which turned 4 when we were there said "mom, my wish is for Maisie to talk like us, without her talker" Thinking about it, writing about it still brings tears to my eyes. Although Maisie doesn't talk she has beat other odds.

Summer 2015- she rode a bike, not her adaptive bike but a bike with training wheels!!!

Maybe it was because I purchased 12 different kinds of ride on, bike, trike like things to get the skills going. Maisie is determined and so am I!

The journey has been long, the days can be challenging and I believe all things are possible. Maise can't do it... YET.

We will be seeing a new set of doctors at Mayo Clinic in Rochester, MN at the Angelman Syndrome Clinic (3rd in the nation). I am excited to see what they say, what am I missing, how can I help her grow and do more... because anything and everything is possible when you believe that it is. Maisie has given me lessons that I could never learn in college or in my job. In fact Maisie has impacted my work beyond  belief. I am an administrator and oversee our special education department, must I say more? :)

Thursday, August 1, 2013

I should really try to make this a habit! I sit her at the table in our beautiful new house that we are making a home. Maisie stares at me, with this look like why the heck did you make me get up! We have had many new adventures since we moved last month. My goal is to not go weeks or even months to update but at least on a weekly basis. Welcome back!

Sunday, May 12, 2013

Mother's Day

A post from my mom-
Happy Mothers Day all my FB Mothers. I would like to wish my daughter a very SPECIAL "Happy Mothers Day". Mindy McBride (my daughter) has a special needs daughter and to see and hear all of the things that she does for Maisie to see that she gets her therapies and special needs taken care of is just amazing. I LOVE YOU Mindy and am so proud of you...
 My reply (via FB)

You know I always try to stay positive. At work I am often told that I always have a smile on my face. Someone I barley knew said "do you always smile?" I guess I get it from my daughter Maisie, those Angels can always make your day with their smile. It is days like today that remind me how hard motherhood is but how I try my hardest to be the best mother I can be. Thanks mom, your compliments truly mean the world to me! Love you!

Today as we were driving to Target I was thinking about being a mom. You know motherhood has taught me a lot. Being a mom of a child with special needs is not what I ever anticipated. This morning Maisie gave me a BIG wet kiss on the check (mouth closed and all!!!) even though she will never say I love you like most moms get to hear, I know she does. Happy Mother's Day to all my momma friends and family.

Saturday, October 6, 2012

Maisie update

Hello friends!
Well many things have happened...
Maisie became a big sister January 2012. This may be one reason I have been awful about keeping up with this blog. Elsa Louise has been pushing Maisie :) When Elsa babbles, Maisie feels the need to talk back to her. Maisie is also learning so much about sharing: toys, mom, dad, and now her iPad!! This fall Maisie started going to school 5 days a week! She is at school for about 3 hours (including bus ride). She is learning a lot!
You know Maisie has made me a mom that I never thought I would be. She has opened my eyes and my mind and has impacted my teaching. I have been trying to spread the word about AS and advocate for Maisie and others.
Some of the things that are new: Maisie is starting to use the potty! It's not consistent but when you ask her she nods her head yes or no and then OFF we go. This is where I wish I had a main floor bathroom! Maisie is now pedaling her trike, darn near running, swinging on her belly. Playing in the backyard has been a favorite, I am sad to have the colder weather. Our swing set now officially has bare marks under the swing from Maisie going out and swinging on her belly! Independence!! WOHOO! Maisie also learned how to kick in the water using her little boat and steering it around. Maisie then graduated to a Puddle Jumper where she kicks and uses her arms! I think she will be a swimmer :)

Tuesday, March 6, 2012

FF- Fasr Forward!!

Maisie is making such great progress! She is now using the signs-more, music, and puppy. She is stacking, putting items in/out. Pointing to the tv and requesting with a sound. Her attention span has increased AND her teacher says they are thinking of moving her to the AM class which can be 5 days a week because she has made such great progress!!! Proud mama! Can you tell?