The Storm Wave Of Registration Day

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

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.

Summer Trip to Sycamore

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!

Surprise! A Story Within Owen's Story!

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.

The Purpose In A 'Pop Up Shop'

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 Medical Hotel Staycation

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.

Horse Therapy: Term 2

We’re baaaaaack!

Second term of horseback riding therapy is in the books, and this time, we have done some big things! To start off this term, Owen got some boots and a new helmet for riding. One of his favorite things to receive after going to therapy or doctors appointments are the stickers, so as his routine of grabbing one when he is done has turned into putting them on his helmet now. It will be fun to see them all add up over time!

This term in a few words would be: challenging, successful, tired (because parenting lol) and cold!

Being in the winter months, we were bundled up snug most of the time, it was really cold this year! Ick. There were some days that we didn’t go because it wasn’t safe to have O out in it, and even though we are inside the arena and in the barn on these days, we try and keep Owen indoors above a certain temperature so that his joints don’t hurt him.

To summarize, Owen learned some responsibilities around the barn, had a really fun day doing all the chores and cleaning his favorite horse. He actually loved going back and forth to fill up the water and enjoyed brushing her for longer than I thought he would. He was so proud, you could just see it on his sweet face…

Awareness Day + A Graduation 2019

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.

Crossing Paths With A Warrior

While I’m sitting here on my delayed plane and have already missed my connecting flight, my mind is wandering and thinking deeply about recent trips and conversations.

This specific one takes me back to my evening flight home from Napa, CA a few weeks ago, when God purposefully placed me next to a woman and knew that we needed each other in that moment. I was heading home from a Women Warriors planning weekend and MPS Napa 5k, deep with emotion on Owen’s Story, my purpose, and his diagnosis. We made small talk and talked about how she was from around my hometown area but now lives states away. She was home because her mom just passed. We chit chatted, I told her about Owen’s Story and she told me beautiful memories of her mama and wishes for her dad for the future without her by his side. We related to each other in different ways and comforted each other in others.

I gave her Owen’s infamous traced print from our shop, “one day at a time,” and together our eyes teared up and there was a moment of silence.

It's Time...

Time is valuable.
Time is priceless.
Time is quickly taken for granted and it’s something you never get back.
Time is happening right now, right in front of you.
What are you doing with your time? Who are you spending it with?

For some people, ‘we have more time.’ There is time to ‘do it later, not right now, but soon… another time…’

But really… this individual, this family, this community going through this disease…
We don’t have much time.