Sisters

I’ve posted in the past about the special bond that James and Annie share. It’s not that Gracie doesn’t love her big sister but it’s difficult for a 2 year old to fully understand other peoples feelings and to be compassionate when that’s the time in your life when the world revolves around you. There are many times when Gracie wants to climb into my lap but has to wait her turn because her big sister is hurting and needs mommy right now. There are times when Gracie wants to go out and ride bikes but it’s too hot or cold for her big sister so we need to stay in doors. Gracie watches me feed Annie, dress Annie, carry Annie, help Annie walk and understandably, she’s confused . Brothers and sisters of children with special needs need to grow up fast and be more independent than they should have to be. Gracie has proven this theory to be true. Although she is very attached to mommy she is also very independent and has been from a very early age. I was 5 months pregnant with Gracie when Annie was diagnosed with Rett Syndrome. Gracie knows no other life than life with Rett Syndrome. As much as we try to make time for all of our children it’s a fact that Annie needs our attention much more than our other two. Of course this fact has caused friction between sisters.

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.

Chicago!

Well, we're back from Chicago! Every 6 months we head to Rush University Medical Center in downtown Chicago to participate in a Natural History Study for Rett Syndrome. We've gone and stayed a night before, stay the weekend with all 3 kids (and an aunt and uncle for extra hands) but this time we decided to stay on a strict budget and drive there and back in 1 day! Needless to say we were less than thrilled to head out this time but we did anyways. The trip started out a little rocky when we remembered that our AC didn't work and temperatures were going into the 80's! We spent 2 hot hours on the road when we decided to turn off and grab some fast food for lunch. We pulled into BK just as a storm hit - before we could even order the power went out - sooooo back on the road. At this point things started looking up, the storm was cooling off the temperatures so we were a bit more comfortable in the car. That is until we hit downtown Chicago with stop and go traffic and the sun came back out in full force. We rolled into Rush just about 30 minutes late and dripping with sweat! We had a change of clothes for Annie so we got her all cooled down and changed! After our less than comfortable 5 hour drive into Chicago we were thrilled to get up to the clinic and find Kelly and Brooklyn!! We have been following their blog for awhile and have become friends over the Internet, it was so wonderful to meet them in person!! Thanks Kelly for sticking around for us!! Brooklyn was even more adorable in person! We got just a few quick minutes to chat and then we ready to see the dietitian and get Annie's consult rolling. All went well. We were so thrilled to see Dr. Percy and Jane! Annie was all smiles and giggles and was showing off how strong she is by standing up for almost the entire visit (which was probably nice after the long ride in). Dr. Percy put our minds at ease by checking out our EKG and confirming that it was normal - no Long QT!!!! We do, however, have some work to do with beefing up our tiny Annie (ugg, even with the g-tube she's too tiny!) and pumping more calcium and Vitamin D into her fragile little bones - we've been on Calcium and Vit. D supps for about a year and Annie's bones are still showing signs of thinning. All in all we had a wonderful time and are so happy that we made the trip. We got home at about midnight - Annie did amazing!! She's always so excited when it's just her and her parents - like an only child. She got to choose all the movies on the way up and back and she slept like a champ!

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!

Red Knapps Fundraiser

The Red Knapps Fundraiser last night was not only a great day shared with family and friends but also incredibly successful! I have to start right off by saying that had it not been for the tenacity and love of my wonderful mother in her quest to educate the world about the disease that stole her precious grand baby, this event would not have included Rett Syndrome. Let me explain. As you have no doubt read in this blog we are building Garden's of Hope around Rochester which are paper flowers that local business are selling to their customers for a $1 donation and posting in their shops. My mom took it upon herself to walk the streets of downtown and ask local businesses if they would help us grow these gardens. When she approached Knapps Dairy Bar about the flowers they were thrilled to help and as my mom began to explain Rett Syndrome to Miles, the owner, he very generously offered for us to join the fundraiser on April 20th that was originally for autism. We are so humbled by the generosity of Miles and the whole Knapps and McDonough family! Thank you for letting us be a part of this wonderful day and we hope to connect again on future fundraisers. And to my mom and greatest Grammy, we all love you and appreciate all the selfless things you do!

Monday started off cold and rainy and unfortunately it continued to rain throughout the day and all evening long. The morning started off slow and we began to feel a bit discouraged but by evening the dinner rush poured in and didn't stop until almost closing time! We had such a great time hanging out with friends and family and meeting new people. Everyone that came in was so generous, buying flowers and raffle tickets and supporting our worthy causes. The guests of honor - Jackson and Annie - were a little overwhelmed by all the people and noise and didn't stay too long but I'm sure they felt the love and support that this event brought. After the night was over I came home and reflected a bit. We've done many fundraisers in the past and the feeling in the end is always the same - despite the money raised they are all successful. I am always moved to tears afterwards at the love and compassion of the people around me. My family (as a never ceasing source of support) and our friends, neighbors and even strangers come together and show their support for one tiny, little, angel. Annie has touched so many lives I don't think I could even begin to count them. She is 4 years old and has never spoken a single word but her presence and even just a picture of her moves people. Why God chose us to watch over an angel and care for her I won't know until I'm Home, but one thing is for sure, I will continue to thank Him every day for this enourmous blessing.

Thanks again to all who attended!

The view from the street!

Standing room only!

Annie, feeling a bit overwhelmed!
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.

Spring Break

Well, Spring Break is over but at least we got to enjoy a lot of good weather and sunshine! James and Grace had a great time but Annie was off and on during the week and, unfortunately, spent most of her time at appointments and evaluations. Annie takes after me, she's a type A personality, getting her off her schedule is not a smooth transition. Here are some pics of the kids having fun this week!

James riding a horse at the Earth Day Expo

Gracie's turn!

Girls Night In! Its flip flop weather, the ladies need their pedi's

Riding bikes in the 'hood

Gracie and I had a picnic, just the 2 of us and then spent some time on the swings

At the park

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!

He Is Risen!!

Happy Easter Everyone! We had a great time celebrating with family. Unfortunatly Annie had a rough day - well, she was good until after the egg hunt. By evening we decided that it is a combination of upset stomach and seasonal allergies! Bring on the claritin, it's finally spring!! Here are a few pics of the festivities.

Red Knapps Dairy Bar

Red Knapps Dairy Bar has teamed up with us and is giving 1/3 of its proceeds from sales on April 20th to Rett Research! 1/3 is going to Autism Speaks and the remaining 1/3 is going to a therapy dog for a family member with Autism. Please make sure to stop by on April 20th from 9am to 9pm and grab a malt and burger! Hopefully it's a nice day and we can pack the streets of Downtown Rochester. A special thank you to Knapps for their compassion and generosity! While you're there make sure to buy a flower to grow a Garden of Hope for all the beautiful angels battling Rett Syndrome. See ya at Knapps!

Don't Complain.... Be Thankful!

James brought home this project from bible school the other week. We've had it on our fridge and it has sort of been our house motto. Everytime there is bickering or crabing or fighting in our house (which is often with a 5 year old, 4 year old and 2 year old) I remind the kids "don't complain, be thankful". Well today it was my turn to be reminded. I woke up in a less than enthusiastic mood today, to be quite honest I was sad. Maybe it was because Annie was up most of the night, or maybe it was because Annie and I were gone most of yesterday for tests and consults and I wasn't able to spend my usual time with Grace and James, whatever the reason, it was a sad morning. I spent some time in pitty party mode crying about all the things on my plate until the kids woke up and it was time for mom to focus her attention. Unfortunatly Annie woke up in pain and started the day off with tears as well. This of course gave me more fuel for my pitty party. We finished up breakfast and all 4 of us headed upstairs for bath time. James and Grace got in and started to play while I sat in the hallway right outside the opened door with my Annie in my arms screaming in pain. I had given her her meds but they didn't seem to be working so all I could do was hold her. I sat there asking God why He wasn't taking away the pain, why He was taking so long to bring us a cure, why He had given us such a heavy load to carry. And then I looked up. I saw James and Grace in the bathtub and started listening to their conversation. James was teaching Grace her colors using the fish bathtub toys. He asked her "Gracie, where's the green fish" "here Jamesy, freen fishy", "No Gracie, not freen, ga ga ga GRENN, it starts with a G, just like your name Gracie!". It was almost too much. In the midst of my complaining I was missing everything to be thankfull for. James looked over at me and I gave him a thumbs up and mouthed the words "I love you". He blew me a kiss back and went back to his lesson with Gracie. I started thinking of other things I had to be thankful for and looked down at my angel, still in my arms but now asleep, the meds must have finally kicked in and she could finally get some relief and rest. Thank you God for 3 wonderful miracles. Every time I look at them I am reminded how blessed I am. Today I am truely blessed because even in my dispair I can take comfort in the fact that I am not alone, I am being held.

Raising Awareness

I just had to start with this pic. I have major spring fever!!!

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:
Sumo Sushi
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.

Blessings!