Happy New Year!

So I had the most amazing dream the other night - which is weird because I was spent and typically you don't dream when you're that exhausted - but anyways, in my dream Annie was sitting at the table (in a "real" chair, not her special chair) and was using a pencil to write her name. The dream was so vivid and so real. I've often dreamt of Annie walking, running, talking, singing (by the way she has the most beautiful voice I've ever heard), and dancing. But writing, that was a little different. In my dream I remember looking at her and feeling a lump in my throat, and tears pouring down my cheeks. In the dreams where Annie walks and talks I'm never that emotional, but seeing her write her name, just took my breath away. I have always prayed that Annie would be completely healed, that rett syndrome would be totally reversible but it always seems like I think about walking and talking and am never really able to wrap my head around any more than that. This dream was so encouraging, as if God was showing exactly what His perfect time was going to bring.

I can only imagine Annie being able to turn the pages of this book.


I have a few New Years Resolutions in mind but one in particular I am really going to try hard for - to stop being so controling. I know what you're thinking - "you, controling? No Way!!" - but I assure you I am a control freak! :) I have this tendency to try to take everything on, never letting anyone help because I need to have it done in my own way and what winds up happening is that I realize I can't do everything and then I'm just frustrated. I am going to try hard to not only ask for help when I need it and actually allow people to help me even if they aren't my clones and have different ways of doing things. I am also going to try to leave things to God, trusting that His ways are best (even if I can't see that right now) and to not interfere with what He has planned because, as my dream pointed out to me, His blessings are far to great for me to even hope for.

I pray that 2010 brings about wonderful blessings for all of us. Greater faith, health, and prosperity. I pray that Gods perfect time is coming and that in 2010 even the things we haven't dared to hope and dream for Annie and all the girls and women suffering with rett syndrome come true!

Happy New Year!

End of the Year Giving!

Are you or your business looking to get in one last donation before the new year? Consider investing in our angels. Your gift could be life changing for Annie and the thousands of girls and women like her. Rett Syndrome research is at a pivotal moment right now, the science is there for a treatment and possibly a cure, the funding is not. To make a gift in honor on Annie visit reverserett.org and click on donor. You can also click on the link to the right (Help us heal) to purchase a drug for the drug screen in honor of Annie. Our girls are waiting in silence....

This is life with Rett Syndrome. Pause the blog music at the bottom of the screen to hear the video.

Christmas Cuteness!

Christmas Eve we spent at my moms house. She does such an amazing job. All together there are 30 of us and she cooks an amazing meal for ALL of us! With all the excitement Annie usually spends much of the evening upstairs in one of the bedrooms with the door shut, but this year she did so well and spent the entire night smiling, laughing and playing with her cousins. She even spent her very first year sitting at the kids table to eat dinner (typically she's on Scott or my lap). That night Annie gave Scott and I the best Christmas present ever by sleeping through the night and not waking until 7:30 in the morning!! Christmas Day we saw a lot of the same. Annie had a blast opening her gifts (typically she's overwhelmed and ends up opening her gifts later on). We then packed up and headed over to Scott's mom's house. We had a great time catching up with the MacDonald's and as always Scott's mom cooked wonderful turkey dinner! Here are some pics!

Look at my handsome James! (This sweater lasted about 10 minutes!)

Scott and Annie watching a little TV

This year I got into dressing the kids, for Christmas Eve they wore black dresses with silver sparkles and both had Christmas red painted finger nails! James and I had a deal, he would wear a sweater if he could pick it out - he did a great job and wore his favorite color - green!

The kiddos (well, most of them) - 12 wonderful blessings!

Christmas morning - James and Gracie sneaking a peak at the gifts.

Gracie trying out her new "big girl" bike

Annie opening her princess bath stuff! (please try to ignore my not so cute morning look)

Christmas Day the girls wore red and James and I had another deal, he would wear a sweater again but only until the picture was over.

yep, its off!

Gracie setting up her stack of gifts!

Sweet Annie!
James and Annie watching a movie after 2 long days!

Lots of gifts and lots of food but the most important thing is that we were all together, all healthy, all happy- couldn't ask for a better a Christmas than that!

rollercoaster

Well, I have been on quite a ride lately. Lets just say Christmas has brought not only great, fun, family times but also some very sad, angry and questioning emotions. Much of this time surrounds around Annie. She loves to be around people and fun times but gets overwhelmed when things get, well.... overwhelming. Who can blame her, at times I feel like I want to scream at the top of my lungs too. In fact Annie is much more reserved than her desperate mother would be in her position. Annie is the epitomy of love and grace, only crying out when the pain and frustration becomes too much to bear, not when it's just a nousance. I look to her for my sense of strength and endurance but as a mother it breaks me to my core when I see her cry. I just want to make everything Ok, to hide away with her, deep in a cave, never to come out until our cure is found. Unfortunatly I would miss James and Gracie much to much to let that ever happen. Not to mention the fact that I would be hiding an angel away, keeping her only to myself and that is definatly not what God has intended.

Lately I've been feeling so torn. I want so badly to participate in fun, Christmas activities, parties and good times with friends and I want the kids to really enjoy this time, but then I hear the cries and see the tears and all I want is to shut the doors, turn off the phones and stay warm in the house with my amazing husband and children, where its safe. I guess much of this stems from the season, the gifts, the atmosphere, the get togethers. Its so easy to go through life on automatic pilot each and every day. Tweeking things here and there and slowly making adjustments for the little things that come along. But then Birthdays, Holidays, Celebrations come up, you think you're fine and then "bam"! It hits! You are sooooo NOT normal. Suddenly the routine is shaken and you are out of your comfort zone. Suddenly there are questions like "what can I get her?" and "what is she able to do and understand"? Suddenly there are thoughts of all that is lost. Instead of dweling on what could be, my heart is directed to what has been taken away. Where's that cave?

I'm trying to put it all in perspective. I know soo many people go through this same thing, I am not alone. I know that we all have our crosses to bear. That God never promised a perfect life. I know that I need to dwell on the positives and that nothing can ever make me happy unless I'm content in my circumstances. I know all this but what is expected when you child screams unconsolably? Where is the contentment in watching a child on Christmas morning who is unable to run down the stairs to the Christmas tree or who is unable to peel back the Christmas wrapping on her presents that she's unable to ask for?

I don't have any answers, but I know the one thing that brings me a little peace. Knowing that this is a season and that this season of dealing with Rett Syndrome will eventually come to end, but more importantly that this time is part of a bigger plan. A plan that is bigger than me and my little family and little life. I find peace in knowing that there is a God that created the universe that created my Annie and He will work all things for good. That He has the last say and that He WILL restore health to her and heal her of her wounds. I will continue to hold on to the Hope that I have in the baby Jesus that came to save the world so many years ago and is still living today - who is still saving, restoring, loving and healing. Thank you God for sending your son. Thank you for this time of miracles and for the 3 amazing blessings that you allow me to wake up to each and every morning.


Happy Birthday Jesus!

Merry Christmas Everyone!

Christmas Time!!

Well, we finally go the tree up and the house decorated for Christmas!!! Scott did a great job on the lights outside a few weeks ago but it wasn't until Monday that we went out, got a tree and brought the decorations out of the attic to decorate the house. I LOVE Christmas! Having fun with the family, having Scott home more, having the kids home from school, Christmas cookies, the tree, I even love Christmas shopping and wrapping gifts. I love waking each morning and having the kids open the doors on their advent calendars. I could, however, do without the howling winds and freezing temperatures. Anyways, here are some pics of trimming the tree! Oh, and I forgot the song thats playing is one of my favorite Christmas songs, unfortunatly I couldn't find the Christmas version, but this is close enough!

Computer Time

Annie's been working on the computer so much lately. We are really trying to get her ready to test the ECOpoint by PRC in December and the new MyTobii on January 18. These are the 2 eye gaze computers that we are trying to decide on for Annie. An eye gaze computer would allow Annie to be able to communicate with her eyes via the computer. By late January we hope to have made our decision and will be on our way to pleading with the insurance company to pay for atleast part of the device. Annie is so excited! She loves being on the computer but is ready to do more than just play games, she has so much to say!! Here she is playing a game that requires her to wait to respond, right now she's using a switch. She uses one very well and uses 2 with some frustration but having only 2 switches is very limiting. Her eye gaze is getting to be so good that I'm almost certain we will jump right to 4 or even 6 frames. Annie's a smart cookie, and VERY determined!

Annie's not the only one who is enjoying the computer lately, here's James and "his girls". I can't remember exactly what they were looking at but I'm sure it had something to do with a planet or a constellation - he's really into astronomy these days!

Little Gracie!

My little Gracie seems to be growing up before my eyes! Something about turning 3 just makes her seem more like a little girl and less like my baby. It's so great to see her being more independant and finding her own interests! This is Gracie at the Painted Pot. They read the story Mooseltoe and then Gracie got to paint her own moose. They glaze and fire the pottery and we will be able to pick it up in about a week.

Just recently she's told us that she wants to ice skate and do gymnastics! Dad is going to be sooooo excited about ice skating! I think she's thinking more figure skating than hockey but hay, as long as she's got skates on dad will be thrilled!!
Oh, the new song that's playing on the blog is Gracie's favorite. She recently went to the David Crowder Band concert with me, my mom and my sister. Sooo cute to hear her sing and watch her dance to this!!

Thanksgiving!

We had the most amazing time at Thanksgiving with my family. My mom, as always, made such a great meal, turkey, stuffing, mashed potatoes, pumpkin pie, the works!! It was so nice to get the family together to talk, let the kids play and enjoy eachothers company. Thanks mom for a wonderful evening!

Beautiful Emma, getting her groove on!!

Our wonderful Uncle Jeremy!

Our newest addition - Matthew James O'Neill!

Joe, James and Annie enjoying a movie.

Best Buddies! Annie had such a great time, she smiled all night long!! Gracie and Emma being silly together!

Use your Girl Power to fight Rett!

Girl Power 2 Cure has something new we'd like to share with you! It’s the new Girl Power 2 Cure toolbar – once added to IE or Firefox, each time you shop at more than 1,300 stores (from Amazon to Ebay!) a percentage of your purchase will automatically be donated to Girl Power 2 Cure – at no cost to you (and you may even save money as the toolbar provides coupons and deals as well!). Now is the perfect time to start using the toolbar as you begin your Christmas shopping!! You will be raising money for Rett Syndrome research with each online purchase!!The toolbar also has a search box and each time you search the Internet, about a penny is donated to Girl Power 2 Cure http://www.goodsearch.com/toolbar/girl-power-2-curePlease pass this along to all of your friends. The two minutes it takes to add this toolbar to your browser can make a lifetime of difference for our Rett Syndrome angels!Get the toolbar NOW! Click Here!

Weekend Things

We had a nice, relaxing family weekend this week which was so refreshing because of the crazy schedules we've been keeping around here. Saturday Scotts work had a family day so we packed up the kiddo's and went to American Axle to check out where daddy spends his day's. James of course LOVED every minute of it and Gracie was pretty entertained as well, unfortunatly Annie could have done without the machines and noise, not to mention the cookies and donut holes everyone was gobbling down that are not part of a gluten-free diet. The kids left with bags of American Axle goodies!

Sunday was also relaxing. We all went to church together (which we haven't done for quite some time now) and Annie spent her very first day in bibe school!! Of course I stayed with her and we had a blast!! Annie smiled the whole time, she loved being with the kids and made some new friends. There was a sweet little boy who was watching me do hand over hand with her art project and told me to be very careful with her because he thought that her arms were hurt (she was wearing her arm braces). How sweet that on day one she already has friends watching out for her!! Annie spent the rest of the day laughing and smiling! Gracie also went to bible school today - she went in screaming and crying but came out with a huge smile and was so proud of the project she had made! I'm hoping they remember this Sunday so next Sunday will go just as smoothly!!

Chase Community Giving

Chase Bank is giving away $5 million to various charities and they are letting the public decide which one. The Rett Syndrome Research Trust is among the many non-profits in the running. The results of the research that would come out of this type of gift could be life changing to Annie and the thousands of girls like her. Please vote! Round 1 for voting ends on Dec. 11 and then a second round a voting begins which will give you a chance to vote again. I've said it before and I'll say it again, The science is there, the funding is not. Please help us by voting for the Rett Syndrome Research Trust!

Chicago

This past weekend was our biannual trip to Chicago to participate in the Natural History Study for Rett Syndrome. Basically it's a chance to meet with some wonderful Rett experts. They collect data on Annie, skills she's lost or gained, medical issues that have come up since the last meeting, her height, weight, etc. All in an effort to gain more information about Rett Syndrome and how it affects our girls. We also have a chance to ask any questions that we may have about Annie and any problems she may be having.

Our meeting was not until Sunday afternoon and we had decided that we would just make the trip in one day, drive there for the apt. and then drive home right afterwards. But once I realized that the kids had Monday off of school we changed our minds, packed up the troops and took the family with us. I'm so glad we did, we had a blast.

We arrived Saturday evening just in time for dinner and then a dip in the pool - too bad we didn't bring the camera for that Annie had the BEST time swimming - looks like we'll have to come visit Aunt Katie's pool this winter!! Sunday we woke up, went out to breakfast and then headed to Navy Pier. The kids LOVED the boats!! The Chicago Children's Science Museum was right on the Pier so of course we had to check that out. Then it was off to Rush Medical Center for Annie's appointment.

We were the absolute last apt. of the day so the place was pretty empty when we arrived which was a little disappointing because we were really hoping to see some other families, but it did mean that we were in and out in record time. The appointment was all positive. Annie has gained weight and a couple inches and her doctor was thrilled with how healthy and strong she looked. This was great news especially coming off of almost 3 weeks of being sick. We thank God for Annie's health, we know how blessed we are when we hear of the struggles some of the other girls are having.

After the appointment we were back in the car and heading home. The kids did so great and it ended up being a very relaxing and fun trip for all of us -well except for Scott who so graciously drove all the way there and all the way back while I caught up on some much needed sleep! - Thanks Scotty!!

James and his giant pancake breakfast!

James and Gracie on Navy Pier


The Ladies on the Pier!

James and Grace in front of the Inventing lab - I think James could LIVE here!

James and Grace - inventing!

Annie was exhausted when we were at the museum but not too tired to give us a little giggle when we stuck her hand in the T-Rex's mouth!! Good Hands cutie!!!

Gracie turning the water wheel

James and Scott building water channels!

Toast to a Cure!

Well, "Toast to a Cure" is over, it was last Thursday evening and it was such a blast - if I do say so myself!! We had a great time catching up with old friends, meeting some new ones, talking with family and friends all night long. The night went by so quickly, I wish it could have lasted forever (but honestly I'm more of a "slippers" girl these days so my feet were KILLING me in the "cute shoes")! We had so many people come out and support us I hope I got to each and everyone one of them to thank them personally but I'm sure there were a couple that slipped by me. I also did manage to get up in front of the dredded mic too and give a thank you - lets just say talking in front of groups is not my forte - especially when it's as emotional as a fundraiser for my sweet angel. We are so blessed to have such a wonderfully supportive group of friends and family. Your love, friendship, support and prayers make this journey so much easier! Love to you all!