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.

A Warrior Friend Right Next Door

Ever since we’ve moved into our home on the corner of College Avenue, the house next to us has been empty. There is a ton of character that flows through it, as it’s an old house and has original fireplaces, built-in church pews, etc but has always just needed a lot of work. We would peek out the window each time someone would walk through it with their real estate agent, wondering if they were the perfect fit… but nothing. Everyone would walk through it and we would never see them again.

Until NOW. We have new neighbors!!!
And to say that they are the ‘perfect fit’ would be an understatement!

Preparing For A Change In Education

The last couple weeks have been a bit hard… emotionally.

We’ve officially started the process of transferring schools from public school to the special ed school. As of Monday April 1st, he’s been going to school for half days at his small public school from now until the end of the school year to create a happier day overall for him while attending and being a part of the things he still loves and having less frustration in the school day as the afternoon approaches. He still gets to play and be with his friends, attend therapies as usual and specialty classes such as music and art with his classmates. He enjoys and is known to have a happy and social lunch time with friends too, so mama picks him up now after lunch!

As much as we were praying to be able to keep him with all of his friends through elementary school (5th grade here), he’s no longer obtaining information on the cognitive levels of his peers (which is just fine!) and is still steady at a 3-4 year old level of understanding + conversations. Since Owen goes to school more for socializing rather than learning at his level of 2nd grade, we know that at his new school he will absolutely THRIVE and enjoy it just as much as he’s always loved any school he’s attended.

Horse Therapy: Orientation + Term 1

This was the very beginning of a very important and special chapter in Owen’s Story. We have completed our very first term in therapeutic horseback riding. I take a lot of photos and videos at this therapy every week, for obvious reasons of seeing him relaxed and happy, but sometimes he has hard days with it too and I want to remember everything that comes with this journey. These horses have made an impact already and I’m so excited to have them be a part of our story to create a sense of comfort and be able to help Owen physically and socially in many ways.

For those who are local to us and looking into it, we go to New Kingdom Trailriders in Sherrard, IL and highly recommend it. It is a place for those with disabilities and their staff is so great. They thrive for success, happiness, they focus to meet each individuals needs and love to show the strong bond that is made between them and a horse that they get to call their own. Owen looks so forward to seeing ‘my Riley and Mack’ every week.

Here is a throwback sneak peek into our orientation night - visiting the horses and Owen’s first time seeing the place and other photos from first term. The 2nd term is going wonderful and I already can’t wait to share it with all of you!

First term: Owen + Riley