Thursday, December 31, 2009
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!
Tuesday, December 29, 2009
This is life with Rett Syndrome. Pause the blog music at the bottom of the screen to hear the video.
Saturday, December 26, 2009
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!
yep, its off!
James and Annie watching a movie after 2 long days!
Monday, December 21, 2009
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!
Thursday, December 10, 2009
Monday, December 7, 2009
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!
Saturday, December 5, 2009
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!!
Saturday, November 28, 2009
Sunday, November 22, 2009
Tuesday, November 17, 2009
Tuesday, November 10, 2009
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!