I wasn’t quite ready to announce it right this second, as there are still things to be done and tweaked, so you will hear more about this again later, but I just couldn’t hold it in any longer! This is a SNEAK PEEK. But being Owen’s birthday, I think it’s an important and a special time to tell you all a big surprise that we’ve been working on! As a parent, I want to mention the importance of finding your child’s strengths. When they are struggling with something, that’s where they have room to grow, as for all of us, but instead of focusing on those areas negatively to become ‘better,’ I want to encourage you to take a step back and take a look at the areas that they are striving in! That’s where they are blooming and that’s truly where their future may be headed!
You see, with the disease of Sanfilippo, our children start to regress at different ages in their individual journeys. We never know when it is going to start happening, and making childhood memories and hoarding keepsakes (just like any other child) is very necessary and quite an obsession for most of us.
One of Owen’s strengths in his journey, within the last solid year as an 8 year old, has been the success and improvement through his handwriting. Now, he doesn’t necessarily love it, as far as being able to compare it to a passion or hobby like others, but he does enjoy writing his first name, which he can comfortably do right now on his own. It may not be in a perfect straight line, but it’s there! Ha. Being able to learn how to trace letters has given him confidence in a way, knowing that he can trace names and phrases that mean something to him and he is then happily able to share with others. Unfortunately, a lot of children don’t make it to the time in their journey to trace, to write, or even sadly, be able to hold a pencil. This journey, as a parent of Sanfilippo, is heartbreaking knowing already that we will not be able to watch our children accomplish most of the future dreams or wishes that we naturally have for any of our children. Graduation, marriage, having children of their own… none of these things are promised or really expected within this regressive disease. It’s a terminal childhood disease... it’s called childhood Alzheimer’s for a reason. It’s nasty, it’s horrible, it’s brutal.
Taking it ‘one day at a time,’ as we thrive to share our personal story is what we have to do while we love on all the moments and share with the world all that we are given and all that our beautiful children are capable of. They deserve every ounce of recognition that any other child receives, through whatever it is that they are able to achieve in life as an individual. This is why I’ve chosen to focus on one of Owen’s strengths in our journey to share with the world. He can live a life right now through whatever it is that he can do in these very moments, so that we can all watch and celebrate every small victory and success along the way for as long as we can. This is my whole purpose in being his mama. I have a purpose in being right here beside him, cheering him on, allowing him to thrive through his strengths and always encourage him into doing the best he can in ‘making his dreams come true.’
My son doesn’t know what it means to choose a career path or even be able to give a solid answer of understanding to ‘what he wants to be when he grows up.’ But in my eyes, at this time in his life, I know that he enjoys books. He loves to read, he loves going to bookstores or libraries, and he has been successful at tracing his letters. Put both of these together and whatdoyaget?
OWEN WROTE A BOOK!
“Owen’s Story” has even such a deeper meaning now. Oh, my heart, how things just fall into place, make sense, and seem to come full circle… it’s all about the perspective, my friend.
Owen and I have worked on this for the past solid year together. These are just a couple pages and photos to give you an idea. He traced letters and the pages here and there as ‘homework’ for extra practice so that he could work on his motor skills. I’m not going to lie to you when I say that he doesn’t even have as much patience or precision as he did when we started. That being said, I’m so glad I went with my gut and started this when we did! Now looking back, with this piece of sunshine being within our hardest year of diagnosis, our darkest days of acceptance, and future planning, the clouds have parted and proudly I can say, we did this together. We made it through a storm. We have dug deep into our passions and strengths and we worked together. If only he knew how great he truly is in my eyes…
This may be the only book that he physically is able to write, but HE DID IT. He has accomplished something GREAT in this life that some don’t even have the chance to do and we wanted you all to be right here beside us to see him flourish in his capabilities!
Knowing that someday will come sooner than we ever wish and he will no longer be able to write anymore, these markings are already forever cherished and the story behind it is my purpose to keep on sharing. We as humans are put here for a purpose. We were created to be outstanding and are capable of so much more than we think. Owen unfortunately doesn’t even know how much of an impact he is making on the world, along with so many other children. But we will always focus on the areas where he is thriving and celebrate the smallest victories.
Meet Owen, a little boy who lives with Sanfilippo, in ‘The Little Boy With The Glasses.’ And help me teach other children that no matter what it is that makes you ‘different,’ you are still worthy, capable and can help make a difference. Be nice to others, stay strong and you will do great things, too.
I’m so anxious to finally get this baby published!!
Thank you to all of our followers, friends, family, teachers, therapists and doctors for all of your support and the spark of fire in my motivation, the kind that encourages me to always keep on going. That is a core choice, as Owen’s mother, that I make every single day that I wake up, having you all by side.
Love to you.