Friday, December 31, 2010
There is a local radio personality here that has spoken a few times about how his family went through a time when they were in severe poverty. They had a roof over their heads but there were nights when all they had to feed their kids was plain dry toast and water. Throughout this hardship he recalls that he and his wife were determined to not let it take their spirit. They stayed positive and hopeful and above all else they always stayed thankful for the things that they did have. Years later, when the hardship was over, they were in a better place and their kids were grown he asked his children what they remember about that time of poverty. Their answer surprised him. They didn't remember being broke and going without, what they remembered was that they spent every night together as a family, and that their mom made really great toast!
When Rett Syndrome entered our lives 4 1/2 years ago so many dreams were shattered, so many hopes for Annie and our entire family were crushed. Since then we have made new goals and have discovered exactly what matters in life. Rett Syndrome has stolen a lot from us, especially from Annie but even with all that has been lost we have always had so much to be thankful for. I want my kids to realize that as they grow and live not everything will be perfect, things go wrong, hopes and dreams die but new ones take their place. Above all I want them to know that one of the most important things in life is to be thankful. If their hearts are thankful happiness is sure to follow. I pray when my kids are adults and look back on their life growing up that they don't remember rett syndrome and sickness but rather the "toast". Here's to a wonderful New Year, one full of blessings and miracles, signs and wonders and a new chance to discover all that we have to be thankful for.
Saturday, December 25, 2010
Christmas 2010 - A Success
Sunday, December 19, 2010
An Annie Update
I FOUND IT!
Saturday, December 11, 2010
Stepping it Up
Friday, December 3, 2010
Score 1 for Annie! Wait.... not so fast......
Monday, November 22, 2010
National Day of Prayer for Rett Syndrome!
"Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” Matthew 18:19-20
On Thursday, Dec. 9 we are asking for everyone that believes in prayer to pray for Rett Syndrome. There is power in prayer and there is power in numbers. We believe that if we all come together and believe that we will see God move on behalf our children. What better time than just before the new year when our research to our treatment and cure is so close. We want this message to reach across the world, just think how powerful it will be to have hundreds or thousands of people on their knees for Rett Syndrome. Pass this invitation on to all Rett parents, family and friends, churches and prayer groups, anyone who believes and will truly pray on this behalf. Are you a believing person but not sure how to pray? We will have a prayer for you that you can use to pray on Dec. 9. Want to spend extra time in prayer? We will have scripture verses that you can meditate on. Do you have a child who is particularly sick and suffering? Give us her name, we will have a list and will pray for these girls specifically.
“Yet, LORD my God, give attention to your servant’s prayer and his plea for mercy. Hear the cry and the prayer that your servant is praying in your presence.” 2 Chronicles 6:19
Sunday, November 7, 2010
Annie's New Language!
Wednesday, November 3, 2010
A different kind of Pain
Tuesday, November 2, 2010
James Challenge Update!
Sunday, October 31, 2010
Ten things Not to Say
I encourage everyone visiting this blog to head on over to Life at Manchester Estate. Ten Things not to say is an amazing blog post by an amazing special mommy! Thanks Andrea for putting into words what all of us special needs parents want everyone to know!
Monday, October 25, 2010
Quest for a Cure total!!!
Friday, October 15, 2010
It could always be worse.
Thursday, September 30, 2010
I Challenge You!
He remembers when her hands worked so well she could actually hold a book and turn the pages.
He remembers when they could play together, not him doing "hand over hand" to play with her.
When he was able to rough house with her, not worrying about "brittle bones" like he has to now.
He remembers when Annie was able to care for him, instead of him always being her caregiver.
James has been Annie's #1 supporter since she was born, just 16 months after him.
Wednesday, September 29, 2010
An Open Letter to Special Needs Professionals
This was posted as a note on a friends facebook page, I just had to share! What perfect timing with all that is going on in our lives lately!
An Open Letter to Special Needs Professionals
By: Pia Prenevost
New teacher, or therapist, or doctor? Is that you?
I just wanted to chat with you a second. To caution you. Or warn you.
Please, tread carefully.
You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?
The slightly broken, definitely bruised one?
Yeah, that’s my heart.
My slightly-broken, definitely-bruised heart.
Now, I realize that as you look at me you might see ... a confident parent ... or an angry parent ... or a happy-go-lucky parent...
You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don’t know the rules and that is for the best... You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...
But regardless of what you see, what you think, or what you believe, this is what you should know:
I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.
Some of “us” parents ... the ‘special’ ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves.
We are your harshest critics. We are our own harshest critics too.
We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.
This essay was previously published on www.thecrackandthelight.com
Friday, September 24, 2010
I know, it's been WAY too long!!
Look how happy this little girl is! I know 99% of it is because she's with her daddy but the other 1% is because she can use the WHOLE patio and get up the the jungle gym to play with her sister and brother!