MPS Awareness Day 2020
With MPS Awareness Day 2020 now in the books, we are thankful for another year - another year with answers, guidance from other families and help in direction for the future, another year with doctors working beside us and our tribe supporting us. And most of all, we are thankful for another year celebrating Owen.
We are blessed to be where we are at in our journey and to us, this day isn’t just another day. We live ‘one day at a time’ here, we concentrate every single day on what needs to be done and try our best to focus and live in the now. This is the day we yell a little louder as a family to ensure we are giving Owen the best life that we can in his future by simply spreading awareness of the horrible disease that he has been chosen as an earth angel to bravely live with. We are truly grateful to you all who help us do just that.
I have another post on some other feelings of this day that will follow this one, so this one is to concentrate on the day itself and what it entailed this year. Living through this pandemic, I know that we are all going through a lot and we appreciate you all for taking the time with us to spread awareness with us on this day, whether you showed up physically, lit a candle or simply wore purple. Sharing Owen’s Story with even just one person that you know means the world to us! We are grateful for all of you.
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This is a cherished piece in our home made by sister Paisley that I always like to look at during my harder days.
The morning started off a little bit emotional for me, as it always does, because well, we are here. But when I came downstairs, my husband was the one who truly saved me this year, as he always does on my hardest days, and changed my mindset immediately through his simple words for this day and for that, I’m thankful.
We decided last minute, like, I’m talking the day before, that we were going to make a sign for the yard. It was something that we could use in years to come outside our home and allow the community to openly be a part of with us. Living through this pandemic meant that plans had to change all around for an awareness day celebration and in my heart, I felt something like this was needed to help make this year special and to help give a little more love into this day in spreading awareness for O.
So, I painted the sign.
It was completely last minute, freehand and somehow, without a care in the world during that moment. It felt so good. I was in a quiet and peaceful element with my soul with a project I knew meant something. I didn’t have an ounce of care or worry (except on how my pregnant self was going to get back up, ha) within that time of sitting on my living room floor with a paintbrush in my hand. It was so therapeutic. It didn’t need to be perfect in my mind to make the difference.
I showered, I put makeup on, I did my hair, all complete with a routine that I haven’t done since this pandemic hit. My girl made it a fun, slow and fresh time for me to start off the day while the boys went to pick up balloons. They made it back just in time to finish decorating the yard before we had some special visitors!
One of Owen’s physical therapies that he is missing out on during this time is horseback riding. Two of his teachers surprised him and brought two of the horses from their farm to represent New Kingdom Trailriders (the location he does the therapy at) and Jordan’s Joy (the amazing organization that has helped us so much to be able to attend therapy). And when I say they brought them, I mean, they parked down the road and physically rode the horses down to our house to play in our yard with Owen for a little while. It was the best thing. Not only is his body missing out on this physical exercise, which he deeply needs to maintain, but the bond between these animals and the children that they help is amazing and I know that he has emotionally been missing that too.
We had our horse “Mac” proudly in our hand waiting for them and they surprised Owen with a horse on a stick so he could ‘ride’ with them during this time. These horses names were Tucker and Remy. So pretty! Thank you so much again you guys for creating a smile on my boys’ face!
Sissy loves horses so, of course we had to get her in there for a photo too!
After our visit with them, we had some down time before the parade started. Sis and I picked some purple flowers from the yard to last through the day and we just enjoyed the time at home with all of the kids together under one roof.
The parade started at 6:30pm, right on time and it was a such surprise to Owen. We set up our chairs out in front of our home and he knew then that there was going to be a parade for ‘Owen Day.’ He was waving and enjoyed the honking from others driving by before the parade even started and the community showed up when they didn’t have to to put a smile on Owen’s face. For that again, we are forever grateful to you all. Thank you to you all who sent me photos as well! I enjoyed snapping some with my phone when I ‘saw a moment’ but focused on the day and it was so nice.
Only just a small handful of some of the fun cars decorated for Owen! THANK YOU!!!
You can click here to view the first half of the parade that was able to be recorded on his Facebook page.
This day also landed on ‘National Pizza Party Day’ which is Owen’s absolute favorite, ha! We had some wonderful friends who brought our family pizza after the parade and it was the perfect way to end the evening.
Thank you all again for a wonderful and blessed year and being here with us or a part of this day in any way!
xx
