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
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
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
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
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,” 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
“Mom, can I go, can I go, can I go?” is all I heard over and over again. My daughter, the daughter who is dependent on me and is rarely out of my sight, wanted to go next door to play with two little girls in our neighborhood. My husband and I kept looking at each other, then back at her, not sure what to do. She had a begging, pleading look on her face, wanting to go and play, just like the other girls. She is at the age of wanting to break away and feel independent. But how could I let her go? How could I trust that she would be safe and make good decisions? Although she is 9, her mental age is that of a 5 year-old. We have never felt comfortable with the idea of letting her go and play without one of us there. I had all of these…what ifs? floating around in my head.
For all of Abby’s 9 years, I admit that I have been a very protective parent. Even before we knew she had special needs, let alone a terminal illness, I found myself trying to protect her from actual and “my perceived dangers.” When I say “my perceived dangers”, I am referring to any and every possible harm she could come in contact with. Being an Emergency Room Nurse can give you a heightened awareness of every possible danger that a child could suffer. I could foresee the smallest danger and knew that it could lead to a tragedy. I did not worry myself sick, I just tried to make the best decisions when it came to Abby’s safety.
After we realized that Abby had a developmental delay, another mommy protective mechanism kicked in. I began feeling concerned about her being bullied, left out or made fun of at school. One particular day in early grade school, I went to eat lunch with Abby. I was standing in the lunch line with her and a little boy turned to me, pointed at Abby and asked, “she does not know very much does she?” I had to hold back what I really wanted to say. What came out of my mouth was “what do you really know at your age?” He did not say anything and turned back around. I looked at Abby and felt a wave of relief. She was holding her tray, standing on her tippy toes, checking out the food selection. She was not even affected by his comment. The beautiful thing about Abby is that she is innocent and simple. She does not even realize that she is intellectually different from her peers. She thinks she is just one of the girls.
“Mom, can I go, can I go, can I go?”
It was nearing dark on this particular night and the mosquitoes were out. Have you heard about the latest mosquito-borne virus that has just reached the United States? Well, I have and it sounds terrible. Once again, my motherly, ER Nurse self kicks in. I ran inside to get the Avon mosquito spray to put on Abby (the spray that I researched and decided was the best for kids). When I got back outside, she was gone. She had already run next door to play. Aside from feeling panicky, a part of me was really happy for her because it was almost as if she was “just like one of the girls”. I kept looking over the fence, checking out what she was doing. As worried as I was, I loved hearing the giggles and laughter from the girls. Even my husband messed around in the yard doing little things so he would be close, right there in eyesight and earshot.
Later after Abby came home, I quizzed her about her independent night of fun. She was so excited and already had the rest of the week planned with the girls. I felt so happy for her. She got to experience what is felt like to be just one of the girls, playing outside until dark, without her parents playing with her or watching over her. It felt refreshing to let her go for just a little while. Deep down I knew she was safe, I just had to let her go.
As I was giving Abby her bath that night, I couldn’t help but notice a new mosquito bite on her leg. Then I noticed how extremely dirty her feet were. I stopped bathing her, sat there for a few minutes and smiled. It really felt like she was just one of the girls.
*Please visit Abby’s website abbygracefoundation.org or Facebook page at www.facebook.com/CureSanfilippo to learn more about her progress and fight for a CURE. Twitter link is @abbygracecure and Instagram link is abbygracecure.