I am so, so grateful to all of you that are reading this blog, and helping me bring a face to a very rare disease. Our time here is so, so short, and I was given a voice to make a difference. I have always been an advocate for people. It’s just a part of my nature. I work in the education field, and I help people enroll in to Bachelor’s programs. It gives me the chance on a daily basis to help people do something more with their lives. Starting this blog was just a natural progression for me as an advocate. They say that when you are a parent of a special needs child, you are their best advocate. I have learned this so many times. My job as Von’s parent is to be able to anticipate his needs, but it is also to be able to speak for him until he can speak. I need to notice changes, and be aware of how things are going with his growth and development.
I was absolutely amazed to see that more than 300 people visited my page yesterday to learn about Von and his condition. I can’t tell you how much this means to us. For the very first time we do not feel so alone. I recieved messages from other parents battling this same disease, and they shared their stories with me. For the first time in a long time, I feel a sense of hope.
On another really, really positive note, Von is finally starting to turn the corner. Today was the first time he’s woken up in nearly a week without a fever. YAY! He is still coughing, and we are still giving him a double dose of his hydro-cortisone, but he appears to be on the mend. I know the next illness is just around the corner. However, the great thing about Von, is that every time he gets over his illness, he rebounds so well. Todd and I also often give each other a high five for getting through it without a hospital stay. Today is a really good day in the Paulson house. Even if it is bitterly cold!
I ask you all again, to continue to share this with people you know. Post it to facebook, or twitter. Really anywhere you can get people to take a look. Von’s story is not a unique one for children with his disease. His crash is so much like many kids that have this disease. We know that he could have died, but we know he also survived to make a difference here. So that is my goal. Rare diseases should not be faceless. There are millions of children out there that have diseases that most of us that have never heard of, and they are some of the bravest kids I have met. We have been so incredibily blessed to have met families from the hospital, that have become part of our extended family. We even keep in touch with Von’s neighbor in the NICU. She was a 23 week preemie, that is the same age as Von. Modern medicine is amazing because she had a 5% chance of survival and she has beaten the odds. For those of you with healthy children, please give them a squeeze and just be so grateful that you were blessed with a child that will thrive. Even if they cause you grief, stress you out, or make you crazy, health is the one thing that we all need to survive. The path for those of us with children with rare diseases is much different, but our children sincerely provide the same joy and love. I hope you continue to follow us, and help us spread the word on PHP.
I am absolutely humbled and honored you are reading this blog. The more support we have, the better parents we can be to Von. So please keep sending the love.