May 15, 2019 will be a day that I will never ever forget.
A lot goes into a day like this. Not just physically, but emotionally. This day, overall, was overwhelming, but in the most comforting sense and in all aspects. Our community has gone above and beyond for us to make sure that we know that we are loved and we will always be forever grateful. So, before I go into our busy, heartfelt, most wonderful celebration day, from the bottom of our hearts… just thank you. With Owen switching schools now in our journey, I as his mama, imagined having some kind of ‘graduation’ for him. This entire day, thanks to so many of you, was more than what I ever pictured and well deserved for our boy.
I opened my eyes at 5:45 am. I could hear the first birds chirping and see the tiny bit of sunshine peek through my bedroom window as my husband wrapped his arms around me and I began to cry. It’s time. The day is here and all the feels hit me at once.
“Today is a big one babe,” he said. “Are you ready for it? It’s okay, we got this.”
Yes, we got this. Let’s do this. This is my purpose. I can make it through this.
All of the emotions that have built up over the time since our diagnosis just last year, all land on the tender heart at once. On this one big day, you can feel the complete depths of it all, an overwhelming sense of emotion. But remembering my motto for The Women Warriors Project that I’ve started for others, “purpose over pain.” Putting the purpose you’ve been created for in this life over the pain that you are going through is always going to overpower anything that comes your way. We just have to remember this perspective and hold it in the front of our mind and heart always.
Purple lilacs that I had picked in our yard the night before gave me a quiet sense of piece while putting some bouquets together and had now filled the lower level of our home. This was such a bright and happy thing to come downstairs to in the morning, helping us to remember down to every last detail of this day.
We got up and took O to school, just like any other day. Except this day… this day was a little different than any normal day. This was “Owen’s day,” as much as every day is Owen’s day in my heart, because with something like this we are so blessed to have him here with us. We got out of the car at drop off and as soon as I turned toward the school to walk him in, purple balloons lined the walkway to his school, hand placed by a friend, which hit my heart instantly with the strongest kind of love. The first tears of the day had started forming, watering up my eyes and as we started walking in. We met his teacher at the beginning of the sidewalk to see that she was holding a cake, made in honor of O, and put together a classroom party to celebrate him that day.
As I walked down that front sidewalk, I will never forget that deep breath I took to help get me through the day, mixed with an extremely deep sense of appreciation for those surrounding us and motivation to keep pushing through.
I headed back home and enjoyed the first bit of the morning with a friend who stopped by to have coffee with me and ended up helping me make Owen’s monkey, George a little matching “O” shirt. My photographer friend, Megan, showed up soon after, who willingly came to help capture our day of awareness. We had a few minutes to chat before the first news crew arrived.
Once he came in, we got all setup and picked a well lit space where we could move Owen’s traced canvas to to shoot. Filming in our home was a very vulnerable and personal space and brought out parts of our journey that were more emotional than just being out in public where we usually tell our story.
I’m so thankful to have two different views captured of Owen’s Story on this awareness day for everyone to see. Still knowing that there is so much more to our journey, the few minutes that were captured needs to be a reminder that they were only a small peek into our real lives. We are forever thankful to every individual that is helping us daily get the word out there about this disease, the horrible one that lives within the walls of this home with us.
After we were interviewed at home, we headed to Owen’s school to meet with the other news crew and start our morning with our boy. I got to soak in the bulletin board that I had finished just a few days before, which welcomes you into the school and got to see faces of support that filled the halls and the color of purple that surrounded us.
Each purple heart that you see was colored and created by each student in the elementary school, grades K-5, which we will take home and put in his room to always remember this day and be able to visually see the love that surrounds Owen. The children’s choices of words and meaning behind each heart were adoringly admirable and really made me realize how much they are actually understanding bits and pieces of this disease. It made it that much more touching and emotional on my heart while I hung them up.
When I find myself in grieving periods, as a parent losing her child, I personally as an artist find myself in a deeper area of creating. This was a fun little project for me to do leading up to this day and kept my mind busy.
After putting the mics on Owen for audio coverage (I was surprised he kept them on for as long as he did!) we gave a few gifts to some teachers and therapists that we hadn’t seen yet. Owen traced my letters and created a note for everyone who has been a part of his journey to put on their desk, or wherever they choose, to always remember him being at this school, to remember his smiles, laughs, silly stories and just visuals of seeing him in the halls. This gift was one of my most favorite things. It was obviously emotional, as it was kind of their ‘official goodbye.’ This week we only come for a couple days before school is out for the summer.
A Brutal Reality.
“There is something so absolutely indescribable about the actual feeling of having to live every day while grieving your child who is still alive.”
After passing a few of his gifts out, we still had a few minutes before his class party started, so we stepped into a quiet classroom to do an interview with the other news station. It was still a vulnerable space, but not as personal as our home. The stories were both the same, the vibes of them, just a little different. I love how one captured more of the rawness of us and our feelings as parents and the other captured the rawness of the disease and the celebration of the day. You can even hear Owen talking to his friends and really get to feel out his personality which I love. Between both of them, they did a really great job with telling our story that day.
We arrived to Owen’s class and the party was already waiting for him! Owen and his teacher showed off the cake that was made just for him and he helped pass out juice boxes to his friends. He had such a great time chatting with his classmates and we could tell by the look on his face that, somehow he knew, without being his birthday, this day was still was all about him.
After all of the snacks were passed out, Owen sat at the front of the room in front of a white board that all of his classmates signed with love. They had a surprise for him and he got to open two small gifts that the class had chosen together. All of these kids in this school “know Owen as Owen,” ever since Kindergarten when he first started here. They all know what Owen loves, what he does and doesn’t like, down to his favorite color, and they also know that it’s the littlest things that make Owen happy.
Our boy reminds us to try and live by this every single day.
We all need that reminder a little more often in our lives, that living simply only makes more room for happiness. So we do just that and hold onto all of the littlest moments in between.
The love from this day alone will be able to help us power through our harder ones. So much unexplained love lives right here in these moments.
The best kind of keepsake memory came home with us from the entire class that I will forever and ever hold close to my heart. On every page of this large, red photo album lay little, perfected creations by each 2nd grade child in his class. Each page included a photo of them and Owen together, a personally hand drawn and colored portrait of Owen and a personal letter from each friend behind it to make it even more special. This means more to me than I will ever begin to explain and will always be in his room where we can see it the most throughout our days. I love hearing him here at home, say all the kids’ names (the way Owen says them of course) and flip through the pages with all smiles. He knows his friends. And I know, even though he doesn’t know what’s going on, he can feel all the love too.
Each one of your children, and all of our family friends, have made such an impact on his life and on our life, if you’ve been a part of ours. This is very clear when we see his face light up or get to listen to him talk about any of you and our memories together on the days that he is able to remember.
Please soak in this little bit of sweetness with me…
Owen passed out the little note he traced as a ‘thank you’ for all of his classmates for always being such good friends to him with a purple ribbon and they all lined up to give him a big hug (Owen’s favorite thing!) It was such a cute little ending to our party that day. The kids told him how much they will miss him and Owen said ‘I love you’ to each and every friend.
The school day is almost over!
With a few minutes to spare, we went into the hall to finish up a couple interviews.
Ms. Nylin is Owen’s aide.
She has been with Owen as his one on one para since he started here in Kindergarten, 3 years ago. I’ve always believed that the bond between a para and a student has to be one of the most special ones in the drive toward success and Ms. Nylin is nothing but just that. Her and Owen have spent just about every school day, all day together. We chose to keep them together this long so that Owen had a sense of consistency during transitions of changing grades and teachers to make some things go smoother. She knows him just about as much as I do as a mama, his needs, wants and what it takes for him to successfully make it through a happy, healthy day at school until he comes back home to me. It was an emotional interview for her, as I would expect it to be. But she is an angel in our life and of course, in Owen’s. I already know that she will continue to be a light that we need and will definitely make a space to be filled by her somewhere in our future.
If your child has an aide, thank them again. They are absolute blessings to our children and deserve to be recognized when they go above and beyond.
Owen’s best buddy Jacob was our first friend, really, when we moved to this small town and started planning on going to this school. I was introduced to his mama and met her at a coffee shop to chat with her about recommendations and prep to get ourselves on a right path for starting Owen here. Jacob has autism, which in the beginning, is when we thought that Owen may have had. Oh, how my heart aches and longs to go back to wishing we would have heard that as our diagnosis. Showing some similar autistic characteristics to some things, but still being able to do other things, those which most autistic kids could not, has made for a confusing, frustrating journey to say the least. But this family, this sweet boy and his mama has been one of our biggest sources of guidance and sunshine.
Jacob saw Owen in the hallway at this point with Ms. Nylin and had run up to him with a photo that he had painted just for O. They hugged and their conversation was “them,” just like any other day. If you know these two, then you can picture their voices right along with me!
Owen: “Mom, look! Hi! Dis my buddy, Jacob.”
Jacob: “Hiii Owen. You on my shirt today.”
Owen: “Jacob, I loooove you.”
News lady: “Aw, are you guys friends?”
Jacob: “Yes, uh Owen my friend.”
Owen: “Forebber and ebber.” (forever and ever)
After putting the final touches on our day at Owen’s school we loaded up the car and headed into town to sister Paisley’s 4th grade class to be a part of her very own awareness day that SHE created for her very own classmates! She asked if Owen could come so that everyone could meet him and ask questions. She’s kind of my little right-hand advocate! And being only 9, I just know she is going to do great things when she grows up.
Sister Paisley has stayed up late many nights talking to me about her vision for this day and what she wanted to make sure that she knew to prepare herself so that she could help as much as she could.
“I want to create two posters. One that says something about ‘awareness day’ that everyone can sign and another that says ‘my brother Owen has MPS IIIA. And I want Owen to sign that part since he can write his name.”
Making her dreams come true, she got to creating with me just a couple nights before and we brought the poster from his school so that everyone could sign on one from both classes that day. Being as shy as she seems to be sometimes, she wanted to do all of this but didn’t even tell her teacher. I made sure to connect all the dots and everything turned out perfect, just the way she was imagining it to be.
These kids were a couple grades older, so I didn’t think about how it would actually go until we started taking to them, but as parents, we were so surprised and happy with all of the detailed questions that they were asking. They asked about Owen, they asked about doctors and they even asked about cures and treatments. It just made my heart so happy knowing that we are educating the younger ones who, one day, we hope to be the ones that will continue to make a big difference.
Owen sat in a chair next to us, a little confused while we talked to them about MPS and the other kids looked a little confused as to why ‘something was wrong with him when he looked so normal.’ Owen is big for his age, but he has the mind of a 3 year old. I asked the kids in perspective if any of them had 3 year old siblings or around the same age. A lot of hands went up and you could see the excitement in their faces start to arise. Owen looked at me while I asked what their sibling’s favorite TV shows were and they started shouting out, “Paw Patrol, Vamperina, Max and Ruby…” Owen stood up and his smile could not have gotten any bigger. It was the perfect visual for them to see (and really get it) on where O’s mind was and how the smallest things meant the most.
Each child made Owen a card to take home, they all signed his poster and we took a class photo.
We jumped back in the car and went to get his favorite strawberry banana smoothie from McDonald’s before getting the kids from school and meeting for a family photo before the rest of our night. We have a blended family and older kids so our schedules are all over the place.
We stopped by to see Great Grandpa ‘Bulldog’ too! Meanwhile there were so many other families, teachers, children and schools that were supporting Owen all that we could not be in person to see. But we sure did feel ALL the love! THANK YOU!!!
Owen’s best buddy Anden, age 10 and in 4th grade, went to his own school, created this poster and was on his morning announcements to share with everyone Owen’s Story and remind them to wear purple, to celebrate O and his bravery on this day and every day. His class also had a present for Owen that he got to open at home on FaceTime with Anden so that he could see and be able to tell all of his classmates thank you from him. My mind is so blown away by these children who are making an impact. I wish I could hug them all!
After the day had settled and we were back home from dropping O off to his dad’s for dinner, Paisley and I put the balloons that were at O’s school and lined our front walk with them as a memory from the day. We only had a few hours to a day left with those purple beauties that our friends did for us, so we wanted to share them for as long as we could to complete our day.
After putting the balloons up, we had only a few moments before our news coverage was going to be LIVE so we hopped on the couches and snuggled in to watch and relive the day spent with all of you. I teared up as I held Owen’s sissy on my lap and his book in hand made by all of his classmates, while Owen was at his dads for dinner.
Ran and I had a moment where we soaked in the day together before we went to pick O up and we enjoyed every bit of the rest of the night with the kids.
Owen loves the moon so we made sure to soak in all the special memories that the night had to offer to finally end this absolutely special, celebratory day.