The Rare Disease Day anniversary always makes me think about my daughter Abby’s path to a diagnosis. I realize that at this time exactly 4 years ago, we were an undiagnosed family. We knew something was not quite right but … Continue reading
Category Archives: MPS
You Are Loved More Than You Will Ever Know
I always thought we would be talking about fashion, school, boys and life changes when you were 12 years old. As a first-time parent, I envisioned I would be the kind of mom that you would be able and … Continue reading
What Field Day Taught Me About Acceptance
A recent experience at my daughter’s field day has once again reminded me of how accepting and loving children can be of others who are different from them. Abby’s field day notice came home with the activities listed that she … Continue reading
Why I Do Not Count Down the Days to Summer Break
Ahhhh………..Spring break. In the chill of February, we know it is just around the corner. The thought of a week-long break from school and the possibility of warmer weather help to get us through those cold winter months. We just … Continue reading
To All Of The Teachers That Have Not Given Up On My Terminally-Ill Daughter’s Future
As Rare Disease Day approaches, I can’t help but think about all of the people that have come into our lives due to Abby being diagnosed with Sanfilippo Syndrome. I have spent numerous hours over the past few weeks focusing on … Continue reading
One Of These Is Not The Same, Or Is She?
One of these is not the same. Can you tell which one? They are all sweet little girls, happy, bright-eyed, full of love, full of hope and have a lifetime of memories to make. They are the same, right? Well, … Continue reading
How Report Card Day Reminds Me That Life is Good
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Four times per year. That is 4 more times that I am reminded of how different my daughter is from her peers. The thought of her academic differences is never far from my mind but the looming day brings it … Continue reading
A Not-So-Typical Birth-Mother Letter
You may never know how truly grateful we are for your decision to choose adoption for your unborn baby. There were other choices you could have made but you chose life and another family to raise your precious child. Our … Continue reading
Special in Every Way
It was in my daughter’s 1st grade school year that we were thrust into the world of Special Education services. IEP, IDEA, LRE, OHI, and LEA are just a few of the acronyms that were introduced to our vocabulary that … Continue reading
For I know the plans I have for you
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future Jeremiah 29:11 It may be hard to believe or understand, but … Continue reading