Thursday, April 30, 2009
Gracie has been known to take Annie’s toys away from her and even lash out by yelling and hitting her. She doesn’t like to sit next to Annie because she grabs at her and gets her “slimy” because she hand mouths. Annie doesn’t mind – she laughs when Gracie is throwing a fit and if Gracie happens to get close to her Annie will reach out to try to touch her (let me just add here that Annie doesn’t typically “reach out” there are very few things that motivate her to attempt this very difficult task). Most of the time Gracie ignores Annie and often doesn’t include her when she’s playing.
It’s painful for a parent when there doesn’t seem to be a connection between your kids. I’ve been praying that Gracie will one day come to care for Annie with a bond that only sisters can share but I’ve been patient, thinking that she will have to be much, much older to fully understand Annie’s disability and needs. Well, at the ripe age of 2 ½ God is already starting to make that prayer come true. Lately I’ve been noticing Gracie’s enormous compassion. It started as a typical 2 year old who loved to play dolls. She would hold them, feed them, rock them. Then I started noticing her attention to children who would be crying at the mall or the grocery store “baby’s crying, she needs me” – “Gracie the baby will be OK, she’s just sad but her mom is here, it’s OK”. We watch movies and if there is a baby crying Gracie runs right to the screen to try to snatch the baby out of the TV and console him. I always just thought she was nurturing.
The past few weeks Gracie’s compassion has been shifting towards Annie. I’ve witnessed Gracie bringing toys to Annie – two of them so Annie can make a choice – “Which one Annie?”.
I’ve witnessed Gracie feeding Annie a snack then turning to me and asking “Gwuten fwee mommy?” - "Yes Gracie, that's Gluten Free".
She has been helping me wash Annie’s hair in the bath and singing to her the “Princess of the Sea” song.
She has even started helping her dolls walk “Good job baby, you can do it”.
This is a 2 ½ year old baby girl. She may not know her alphabet or her numbers but she has already figured out the most important of life lessons – Serve Others. Isn’t this what we are all here for? Isn’t this what we are all called to do? Aren’t we all supposed to be the good Samaritan even when our situation looks as though we are the one in need?
How could someone so small already know what life is about?
It’s because of an Angel. An Angel named Annie that has graced us with her presence and beauty and has taught us all about compassion, love and understanding. She has so many more people to touch. I stand here in awe. In awe of my children, so young and yet so wise.
I'm sure that my kids will continue to bicker and argue and yell at each other but I've seen the bond now and I'm praying that bond grows stronger every day. I'm so thankful that they have each other. Each with their own special gifts to offer.
Praising God for all of the Angels today. How much they can teach the world about what really matters as long as we humble ourselves to learn.
Sunday, April 26, 2009
Brooklyn and Annie - you can tell Annie is holding her breath and Brooklyn is hyperventilating! Little angels!
Annie with Dr. Percy!
Annie with Miss Jane!
So sleepy on the way home!
Tuesday, April 21, 2009
Garden of Hope!
To all who were not able to attend but want to be part of our next event, get your walking shoes out! The Rett Strollathon is May 17th! Email me if you want to be part of Annie's A-Team.
Sunday, April 19, 2009
We are hoping to see everyone at Red Knapps Dairy Bar tomorrow! Remember, 9am to 9pm - 50% of the proceeds are going to Rett Research! They will be raffeling off some great items so make sure to buy lots of raffel tickets and remember to donate $1 to grow our Garden of Hope!
Sunday, April 12, 2009
Friday, April 10, 2009
Tuesday, April 7, 2009
Sunday, April 5, 2009
Well, it’s Autism Awareness Month! Just incase you missed one of my many mass emails to inform everyone! We have been busy, busy, busy over here raising awareness and organizing fundraisers. If you look to the right of this blog there is information posted about Growing a Garden of Hope. Basically this is for stores and business to offer a flower for a $1 donation to Rett Syndrome. I’m so happy to say that with the help of my wonderful mother and our awesome respite care nanny (Miss Colleen) and a beautiful freighbor (friend/neighbor), Lisa, we have recruited some restaurants to sell our flowers:
Lapumas Coney Island
C J Mahoney’s
Knapp’s Dairy Bar
Please make sure to stop in and eat at one of these restaurants during April and buy a flower to build the gardens!
We are full speed ahead for the walk on May 17. This is going to be a wonderful family friendly event with a bouncy, face painting, tattoos, balloon animals, free food and drinks, and a leisurely 1 mile stroll. The walk is being organized by a local family whose daughter passed away when she was just 20 years old. If you would like to join Annie’s A-Team and walk with us we would be honored! Contact me via email for more information. You can also visit the walk website at http://www.stroll4retts.com/
James’s school has also decided to do a coin drive for rett syndrome during the month of April and Cold Stone has already given us free ice creams for the winning class!! This was James's idea. He is constantly saving his money and finding change so that he can "give it to the researchers for Annie's miracle". I’ll keep you posted on how the kids do!
Lastly, make sure to remember Arbonne for all of your spring weddings and showers. They have wonderful skin care products for women, men and kids (I love the kid’s line, so perfect for my sensitive little ones!). Courtney has graciously offered to give 35% of all sales to help find a cure for rett syndrome. The money will be allocated to buy drugs for the sponsor a drug drug screen at the Rett Syndrome Research Trust. For more information about the drug screen go to http://www.rsrt.org/. To order from Arbonne please call Courtney at 248-659-2989. May I suggest the sea salt scrub to get rid of the winter, dry skin – it’s amazing!!!
There are a couple other things in the works so I will post when we get these things off the ground! One last thing I want to post that has been weighing heavy on my heart all day. Rett has struck again and has stolen another baby girl. When I heard this my mind immediately raced back to the fear and pain we felt just 3 years ago. Please join with us in praying for this family. Pray for strength, healing, wisdom. Pray that they will reach out to family, friends, and get connected with other rett families. They are no doubt mourning the loss of so many dreams and aspirations for their beautiful little girl. They are terrified of what lies ahead. There are 20 baby girls born with rett syndrome everyday. Their parents will watch in joy as these beautiful little girls grow and develop and hit milestones and then one day it will all be taken away..... with your help in funding research we will get all of our girls back and make sure that no other family has to feel the pain of rett syndrome ever again.