June 9, 2018
It was a rainy, icky morning. Randy and I woke up extra early to start packing and made everyone lunches. We had to travel about 3 hours to get there, so we were hoping and praying that the clouds and sprinkles of rain were going to subside. There was a whole day ahead of us of walking around the zoo, planning to meet with doctors, listen to a few speakers and it was a great opportunity for us to meet other families. With all of the emotions already building up, all we needed was the sunshine to kick start our day. We packed up the car, woke the other babes up and got on the road! Owen was riding with his dad and was meeting us there, so the other kids enjoyed being able to sleep on the way… and I was of course a bit happier and awake once I grabbed a fancier coffee than my cold cup that wasn’t even touched at home and was able to sit in one spot with nothing to do for a moment, ha.
Once we got there, we signed in and were given a welcome packet and a schedule for the day. The first speaker started shortly after we got there and settled and they had a room just for the kids to play in while the parents attended the meetings throughout the day. They had individuals that were trained specifically to work and play with MPS children as well as their siblings. It was so nice to have this space there for the kids. They had games they could play, coloring books, and crafting projects. We could see them from our conference room and we didn’t even hear a peep from them.
We got the kids comfortable and grabbed a seat in the room, got out our notebooks and prepped to listen to whatever the first speaker had to say. Little did we know we would be crying within the first 60 seconds. They started off with a memorial of a few of the children who’ve passed this year. The room was silent and everyone at our family table had wet cheeks. All of the emotions I had tucked away when we arrived came rolling back in quicker than I could even attempt to control.
These children’s sweet, happy, healthy looking faces. Why? How can this be happening? These families and their poor babies. My family, my baby… WHY??
After I forced the lump in my throat back down to my stomach, I remember the moment of just staring at the pen on the table to try and block out the first couple slides on the doctor’s presentation. I then remember hearing the words, ‘These are the cases that are still ongoing and treatments are finding their way…’ and as they showed this slide below, I knew I was done sitting here for this speaker. Not because of their presentation or who they were, but because my child’s type of this disease was not on the screen. THE ONLY ONE that was not on that darn screen.
I looked quickly through the print out of the presentation they had passed out to us, then I looked at everyone at the table. I gave a look of ‘I’m not staying here for this, sorry.’ They all nodded and we got up together and walked out. There was just no way that we could sit through a whole hour presentation on every type but ours, listening to treatments and other help when there was absolutely nothing out there for our boy. We weren’t strong enough for that yet.
We took that time to just walk around the zoo as a family for a bit. We held hands, took our time in the time we had until the next thing on the schedule, enjoyed the large exhibits and the pretty animals, and the day was still overcast with a bit of a breeze. We took some photos to remember the day here and there and laughed and enjoyed each other’s company. Being together is one of those things that makes you forget all of your worries and being able to do just that throughout the day helped with all of the harder times in between.
I created his tees for fundraising and ordered ours to have done by the zoo day to test them out for all of you. Needless to say, they turned out perfect. They have his glasses, his signature (which he proudly accomplished this year) and his story. Our shirts as a family have our names on the back to make them just a little more special. Of course we missed our biggest brother, who had to stay home due to some graduation things, but we all wore them proudly, as two blended families, and came together on this day with no question, for him.
We met with a few of our favorite MPS board member friends and other parents in person! We have been in contact since our boy’s diagnosis and have been helped and guided so immensely, in any possible way that we’ve needed, by a handful of people in such a short time. It was so nice to be close to them all throughout the day, hugging and just feeling like we are finally able to relate to other families on the same level and understanding, and being introduced to a few doctors, all who gave us more information on what will be next and what else is expected in the future of MPS.
Throughout the rest of the day we had lunch, listened to a couple more speakers while the kids played their games and met some new friends, took a small break and then ended our day with meeting another family, and a sweet girl named Kasey, who is 25 years old and has the same type of MPS as Owen. We chatted with Kasey’s grandparents, her caregivers, about her past, what she loves, what she accomplished when she was Owen’s age and how far she has come. She enjoys swimming like Owen and has also done horseback riding as a therapy, which we’ve also looked into along with his current others. It was comforting to receive some resources that we may need in our future and again, adding to our entire day, gaining a huge feeling of comfort and a sense of knowing that we are not alone.
And if you are a family with MPS reading this, you are not alone either. We are all here together and I can’t wait to help whoever I can throughout our story, to share with whoever may need it, what we’ve been through in our past and the chapters of our story to come in our future. It was the most bittersweet thing to see them next to each other, to hear Owen talk to her and just so innocently love her, with no sense at all of what’s going on.
Innocence is such a pure thing.
And it’s a thing that is going to make Owen’s Story such a happy ending when that time in his story comes. He is happy. His life is happy. He has not a single care or worry in the world and that’s all that matters. His life is pure joy every single day. And he is our deepest joy.
I’ve been so honored to have been asked to be a part of the MPS Society, in different initiatives to help with projects that support families and share information about MPS, such as education and publicity. With our blog here, my photography business and our story, we’ve been asked to help guide and educate other families and I’m just over the moon ecstatic! Remember when I said that you were born to have a purpose in life? I’ve always known I was on the right track of knowing what mine was, but I’ve been working so hard to find the core of mine.
This is it.
I know my purpose. It’s not only to be the storyteller of our own story for a reason bigger than just having a diagnosis, but to help other families in different ways that is going to make a difference.
I know I tell you all of the time, ‘Thank you for reading our blog and following our story,’ or ‘Thank you for choosing me to be your photographer,’ but it’s definitely at a whole new level now, as I’ve always known for it to be deep one. A new level of appreciation, strength, and power of creation when it comes to memories, milestones and what life is truly about.
I would have never thought that a simple trip to the zoo would be so life changing, but it taught us a whole heck-of-a lot that day. And we are so grateful for every single one of you in every single way. Thank you from the bottom of our hearts for being right here beside us, helping us, guiding us, hugging us and just loving our Owen. One of the only things I wish he’d be able to understand is how many people truly are rooting for him and his success of life always.
Hugs to all of you,
love us. xx