I just wanted to say that
I see you, Warrior.

I see when you’re struggling like me.

I see when you’re absolutely trying your best and you’re getting out of bed every single day because you have a calling and a purpose.

I see when you’re feeling so alone, you feel like you’re drowning in the deepest waters, even though you thought you knew how to swim…

Wow, WHAT A TERM this was! We were very busy and took a lot of photos of our fun and happy memories! But most of all we are ever SO grateful for those who are by our side and offer to help us in whatever way they are able. I don’t know how we would EVER thank you all.

We were on the news again with some other friends from NKT sharing our story and how horseback riding benefits our life and Owen’s strength. Thank you for allowing us to be a part of that you guys! We had picture day where Owen got to pose with his buddy, Mack. We got to see our very first teacher who moved away, Smira, who had come back for a few months to help and visit. Nana got to come and watch for the very first time since it landed on the day before Owen’s first day of school when she had a sleepover with us and sister Paisley still came to help often. I love watching her help him. If she comes with, she helps with everything from putting on his helmet, to playing with him while he’s riding, to helping him take off his boots to climb back in the truck to cooling him off with wipes in the backseat and putting chap stick on him. What a sister.

And lastly, we were blessed to meet Michelle and be a part of Jordan’s Joy. Jordan’s Joy was established by the Vershaw family in memory of a local teen, Jordan Schmidt, who passed away after a brave battle with cancer. Their mission is to spread JOY to the brave kids that are fighting battles every day. They are small, but a mighty foundation and are fortunate to be able to tailor their assistance to each individual child that they can help. With their help you guys, Owen is able to enjoy a handful of terms to help his body stay strong and take some financial burdens off of our shoulders as a family at this time. It is the GREATEST blessing. Michelle came with a tee for Owen to wear and a Buzz Lightyear, as everyone knows we are big Toy Story fans! Thank you so so much to Jordan’s Joy and from one mama to another, Michelle! We will never be able to thank you enough for this. God bless your sweet Jordan.

Here’s to another wonderful term that flew by, I so love being able to look back on all of these memories!

Thank you for following Owen’s Story.
xx

If I’m being completely honest with you, the physical feelings that came with this transition of Owen switching schools was sickening a bit and I had a feeling of being punched in the gut. From the very first day that we toured the school in the planning ahead stages, I opened those metal doors after our meeting and as the wind hit my face I started crying, knowing that this is where he should be.

Knowing that he would do amazing here with these people and all of the things and opportunities they had to offer him in his daily routines was so comforting. But it is also the school placement in our journey where he would always be once he got here.

This day was building up in me ever since he started Kindergarten. With having a regressive disease in mind, I knew that along with other things in life that we are reminded of daily, we also wouldn’t be staying in the normal public school forever either. I was secretly hoping in my heart, that we would just finish out elementary school in our hometown with his peers and his tribe. But with reality comes change and with change comes beautiful new beginnings and reason. We just have to keep choosing to see it this way.

Paisley + I made time in our schedule before school started to take a road trip to Nana + Papa’s for some quality girly time! Now that we are back in school now, I’m enjoying being able to get all caught up with our most recent updates and adventures.

It’s important to us as a blended family and me as a mama just to make time for the kids individually. It’s really hard with busy schedules and even harder with a special needs child to create this time but it is definitely needed and we try our best to do something special for them when we can.

As far as this trip goes, this was our first girly road trip that we decided to create as just a girly sleepover at Nana’s. We decided right away that this will be a traditional thing. Not only did we have so much fun with hardly any plans, but now that Pais is old enough to really have good conversations and understand things, I want her to be able to keep her own bond close and maybe one day have sleepovers with Nana on her own! It will be such a memory for her, I know.

As I’m sitting here at my desk in my room in these early morning hours with my little boy still sleeping in my bed after an early morning wake up session, my mind won’t slow down a bit and I already know that I’m up for the day. The thoughts, both happiness and sadness, the strong motivation in my mind to ‘get up and go’ along with the stagnant movement of the mind and body… everything in life through this journey comes and goes in waves, just as everyone’s lives. Some days they feel as strong as monsoons instead of just thunderstorms, but nonetheless it comes and goes, no matter how strong or how long they stay.

Yesterday, there was such a strong sense of a new beginning arriving and also a huge sense of loss coming from my heart. It’s like another piece of our puzzle that has been taken away from us and I can’t get it back to fill the hole. I was trying to accept it but still ignore it when it came throughout the summer, as I knew the time wasn’t here yet.

I still had time…

The ‘clouds’ were forming at those times over the still waters of summer. And now that this week has been inching closer day by day on my calendar, it’s finally here. I can feel the actual wave starting to form in the choppy waters and the noises of the storm have hit my mind. It’s forming in the present days and will be at its peak here in the middle of the month, on the first day of school.

The first day of school at his new school, a huge change in transition on every level possible and sadly, one tiny step closer to the thing that we absolutely don’t want to think about in this regressive disease…

So today and the last handful of days that I have left of this summer, I will stay close to him and hold onto these moments. It’s all we can do as we all know, we don’t get time back. So soak in this day with me.

Horse therapy term 3 is in the books!

This term we celebrated Owen’s birthday! We played a lot of hide and seek, chased Miss Monica around, always still including our toys and have been enjoying riding outside! It was very hot some of the days, so that meant we either stayed in the arena or instead of riding, we did chores and even got to give our Mack a bath one day! Owen wrote his name in the suds on his back and after being all clean, they went for a walk to dry off. When we took Mack back to his ‘home’ for the afternoon, he went to his favorite spot and rolled around in the dirt! Oh, no! Hahaha. At least he got a quick cool off session! Brother and sister got to come again to watch and help a couple times, all the ladies always have a toy on hand and ready to talk to Owen through and Owen has gotten so good with riding with one hand or even no hands at times! There were lots of high fives, laughs and smiles. Owen has been such a good listener and he really looks so forward to coming here.

Scroll through and enjoy this term with us. This therapy will forever be my favorite.
Thank you, as always, to all of our favorite girls who work with us at New Kingdom Trailriders in Sherrard, IL.

I have a handful of blog posts and moments and feelings to catch up on to post for you all, but I’ve really been trying to sit back and enjoy every moment of this summer! If you know me, then you know days, moments, or trips like this aren’t just for taking photos of and posting. There is always a story behind it and it deserves more than just plastering a bunch of pictures. Also, I would have made a couple different albums apparently from just this trip because I took so many (oops) so there’s another reason we turned this into a blog post.

So backtracking to just the most recent tiny trip away last weekend that has made my mama heart feel complete for the summer shenanigans is here for us to share, our trip to Sycamore, Illinois. Sycamore is where my dad grew up his entire childhood years and as a family we would come here to visit and stay with these lovely people. Gary grew up with my dad and they will always be a part of our lives. Penny + Gary have since then, became Owen’s Godparents. Gary’s ability to play and nurture and Penny’s soft spoken voice, even in the hard moments has always been things that I looked up to since I was little.

So, we looked at our calendars, took a spontaneous trip, invited Nana to come with, packed our bags a few days later and got on the road without looking back to soak in one of the last weekends of summer. We had literally NO plans besides swimming in their pool, playing with toys, ordering pizza from and eating donuts in the local pizza place and bakery in town. Owen had all of his necessities and he laughed so much on this trip. It was surely a happy one!

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!

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.

Last night I had the pleasure to be somewhere special, to help bring The Women Warriors Project to a tiny little physical space and show some others first hand who we are and what this is about. At first I doubted doing it, thinking, ‘a pop up shop isn’t really my thing, I don’t know if it’s worth my time, as its landing on a night that I had my boy and wanted to spend time with him…” or just the thought of, “...if I’ll be able to really ‘do’ anything for others during this short period of time.”

It was labeled as a Girls Night Out! You walked around this beautiful, quaint town stepping into shops and boutiques, getting your punch card stamped, signing in to try and win door prizes and chances to win other items. With The Women Warriors Project and Owen’s Story from The House on College Avenue being an online platform right now when it comes to any kind of a ‘shop’ and The Women Warriors Project being so new in announcing our launch, I just didn’t really think that I would ‘fit in’ to this opportunity. At least that’s what I kept telling myself...

The routine of going to the doctors often gets a little too comfortable and sometimes we have to miss family gatherings, friend’s birthday parties or other things. But more than anything, it’s important to stick together and try and enjoy the little moments in between all of the chaos, if this is your ‘normal’ like it is ours, amiright?

Sometimes, when we have a Dr. appointment out of town in the morning hours, we get a hotel room to get the feel of a ‘vacation’ in between all of the busy. Instead of getting everyone up super early and just being on the road, we try and embrace the chaos and try and make it a little more enjoyable when we are able to financially. We chose to do this last minute this past weekend and it was so needed.

To all of the special needs medical families… parents, super siblings, patients… we see you.
Find the joy in the little things with us and keep on going.