February 1, 2011
Hello! Wow, we have the sun shining here in Alabama! I hope wherever you are the sun is shining too! I updated about our beautiful event last week and failed to mention Will's birthday. Will turned 8 on February 10th. We are holding off on a party until it warms up as we enjoy having outdoor parties. I am so happy that Will is doing so well to have Sanfilippo and be 8 years old. These birthday's are suppose to be so precious for parents but I tend to sink a little. We were given an expiration date with Will's diagnoses...10-20. A few months ago a 7 year old passed away, in Switzerland a 20 year old is still doing well. These emotions are usually kept at bay by staying busy but birthdays bring it to the surface for me. I love my little man so very much and I hate watching him slip away. While other 8 year olds are riding their bicycles, reading, learning to dive, playing baseball. Will is forgetting words, unable to ride a bike or read. His future is stolen from him as he slips away. Our friend Hunter had pnemonia so bad that he had to be intubated, he is 12, he is doing much better and was extubated yesterday. Our friend Stefanee, who is 15, is unable to accept her tube feeds any longer. Her body is shutting down and she is being made comfortable with morphine. Please, keep her family in your prayers. These are difficult things to accept when it is an eldery parent or grandparent but your child? There is something very wrong when money is the main reason why there is no treatment for these children. Really?...
Valentine's day is Monday, please enjoy your day, praise your children for their successes big and small, smile and receive smiles, know that you are loved because your child can tell you. Enjoy all that comes with raising a healthy, happy child. I too will enjoy my children, their successes big and small, receive smiles and smile in return and I will know that I am loved because of that beautiful smile...We love our children just as you love yours!
As always,thank you for checking in on us, and please continue to pray for a cure.