Today I googled what sizes pull ups and diapers came in. What size would my 113 pound 8 year old wear? Clearly we are out of the baby sizes, and we are going to eventually be back in them full time due to this disease, but for now, where do I start for days like this? And goodness graciousss, why haven’t I researched this until now anyway? Adult sizes, here we go. Hmm… I should definitely get some of those bed pads for the furniture too… ‘add to cart.’

It’s been a messy morning. I think you already get the picture. Also, never did I ever think that I would be writing a blog post about poo. Ha! Some days they are like this, some days aren’t bad at all and then there are some days I have to go to his school to clean him up a little bit. But here is a little visual for you for awareness sake. And now that I look at this photo, it really is my life, haha. And what better way to give a sneak peek into one of the shirts that will be in our shop this year!

It’s been day whatever since I’ve washed my hair, tomorrow is the day. My coffee has been the closest thing to a ‘bff’ around here lately. The tattoo on my right finger reminds me to ‘smile’ through it, the purple awareness bracelets and cross tattoo on my wrist that you can’t see, remind me to keep going and always have faith while holding onto all of the hard days, like this one, with a small handful of the only clean underwear he has left. One of the new shirts I designed reminds me (and hopefully so many of you) that you are created for a purpose, this just happens to be one of mine.

Just. Keep. Going.

This weekend we were snowed in! These photos actually show the road plowed, haha but all up until, everything was covered in a blanket of about 12 inches.

This is the first time this winter that we have actually gotten to play in the snow and wanted to show you that some kiddos have sensory issues of all kinds that also have to be taken into consideration when doing something, which to some of us, may just seem simple, easy and fun.

It started off with Paisley just wanting to go out and play, so I asked Owen if he wanted to go out and he said “um, no thank you.” This is a normal response from him when it comes to playing in the snow. So we decided that we would open the window and sit and watch her. (Being the thoughtful big sis that she is…) She told me to grab a baking tray like we used to when he was little and she would put some snow on it for him so that they could still play together. So there he sat, in the window with his guys, tossed them back and forth to her and they were happily playing together. She made him laugh but throwing snow, making a snow angel and eating the snow. Brother B then decided that he wanted to go out and oh, boy! Owen then decided he wanted to put his hat on! We watched B shovel a little and Paisley be silly and then once his pup went out to play, he looked at me with excitement! I knew he felt a ‘safe’ feeling.

There are days and moments where all I do is take a single photo to remember the moment and then put my phone away to soak it all in. And then there are times where I want to capture every single moment that I can to help tell the whole story, to share with all of you and have on hand for our kids to look back on. The kind of memories that I know the kids won’t remember as they get older when they are younger when soaking in all of the details that is happening and making my mama heart burst at the seams and just so happy. This weekend that has been documented was just that. A Christmas story for our family that is 1000% worth remembering, down to the very last detail that I could have possibly seen with my own eyes.

It’s Christmas Eve as I’m typing this and I’m just walking around the house anyway with my cup of coffee while my boy rests for a bit, so I thought I would have a little fun time to myself and just take some photos for you of our home to share. Some are right from my Instagram feed, because it looks the exact same, ha. And some are from this morning. It is always fun to me to see how each year is different here, but it all comes together so cozy and that’s all that matters. I want to post more on our home, as I cherish it so much and just really love to see it transform and come to life in different ways. It’s always fun to look back on, I think.

I also want to encourage you to love the home that you are in and the chapter of life you are in right now. Pinterest can be absolutely unrealistic, or even overwhelming, and trying to ‘keep up’ with others ideas or styles may not even be something that you truly enjoy. Don’t wish you had ‘their stuff’ too much, just try to learn to love what you have right in front of you. Once you are able to change that mindset, you will realize that you have all that you need.

I tried my best to capture a little bit of all the rooms and there are areas in rooms you can’t see that aren’t pictured, but you’ll see more soon. These are just some peeks around that give the most cozy feel and to help you get an idea on how I admire cozying up our home for the holidays.

Grab some coffee or cocoa and walk around my home with me. I’ll be taking all the ‘Christmasy’ stuff down after sometime soon, but the lights and some things will still stay up a bit longer to keep it cozy around here in the winter time. Nothing like waiting until the last minute to post this haha!

Merry Christmas to you and yours lovely! Come on in!
xx

“It’s the most wonderful time of the year…”

And this weekend was what we, as a family, have been looking so forward to with our busy schedules. A time to slow down with therapies, finish up with work and just enjoy the time together.

This year was a little bit different, as we had Nana surprise us and come to town to have a cookie day on the same day we chose to decorate the Christmas trees! Normally we do it all sooner, but again, our schedules wouldn’t allow us, so while we still have time (you know, only like two weeks here before Christmas) we’re jumping right in and going all out!

Nana surprised the kids and brought most of the supplies (thanks mom!) and it was just a FUN day with not a care in the world. So many laughs, so many smiles, everyone was in a happy mood and the house was loud with footsteps and echoing voices… take. me. back! Now looking back on this night, I’m praying that we can just unknowingly “plan” to have her here on this day ever year just because of all the shots that I am in too! All the heart eyes. *sigh*

I am a very deep, emotional person. Writing it all out has become ‘my thang’ vs. doing all of those live videos, probably because I haven’t been trained yet to contain my shhtuff.  Every time I have tried to make a video for you guys (so far) I’ve had to stop and redo, you know, because blotchy red face and ugly cry. Yeah, I consider myself the ‘deep, emotional type.’ This is just how I was created to be and at this point in my life, I’m okay with it. I know not everyone is a writer to get where I come from when writing in this darn blog, or if you even enjoy reading things like this, but thank you all for being here with me!

Some mornings I wake up with this extremely strong urge, ready to teach others, feeling motivated in my purpose, filled with hope and drive. Then there are other days when I open my eyes and cringe them tight to only try to go back to sleep so that I don’t have to wake up for the day. Because reality is, it hurts some days. Most days. But no matter the kind of day that I’m having, the passion never changes. Never. That is what keeps me here, that is always what keeps me going. And thank you for never giving up on me.

September 22, 2018 : Five years together on the same day we met

When I think of our Anniversary, this year and I know every one in the future, I think of our story. And our story isn’t just about Ran and I, it’s about all of our babes that came with each of us when we met… we are one big package. And as much as he is mine and I am his and we love each other dearly, we make sure to make the time for just us constantly through the year. So, to me, since our Anniversary lands on the same day that we met, it will always go back to chapter one, when the two of us met the four of them.

We were so happy to have it land on the weekend we had the kiddos so that we could celebrate together and this time we were about to do something that we’ve never done before as a family, just to make it a little more special.

Day 3|5
Thursday August 2nd

San Diego Zoo + Stage Performance day!

After an emotional day before, it was nice to wake up refreshed and look forward to a fun, relaxing day. They had planned a day trip to the zoo for family’s that were interested and we weren’t going to miss it! This was also the first day that we got to meet more families, most which were traveling in today. They had a zoo day planned out for any families that wanted to go. I remember feeling sad that our trip felt like it was ‘almost over’ until I realized it had just begun! There was still a lot in store for us and we were so excited, but little did we know another and even more emotional day was ahead.

Owen woke up super early (surprise, surprise, Sanfilippo.) I took his cpap mask off and had him jump in bed with me for a bit longer to cuddle. But then he fell back asleep and didn’t want to wake up when it was actually time, ha.

Day 2|5
Wednesday August 1

We slept well, woke up being silly and in a happy mood. Today was the first big day of our trip and we came earlier than some families to be here for this day. Today’s conference was ‘Sanfilippo day’ and since Owen’s type of MPS is one without treatment and a little different than some of the others, it was nice to have a day that was dedicated to learning more and just concentrating on us before the rest of the week’s knowledge came rolling in.

This year, our local Junior High Cross Country captains have chosen to run this race in honor of Owen and his journey with Sanfilippo Syndrome MPS IIIA. This was their annual Alumni Run. Our Jr. High runners get their first (practice) 2 mile race and they open it up to all of our alumni, friends, family, and the community. This year, they have chosen Owen as their angel to help and they invited the community to come out in support of Owen and our family and wanted to help by increasing awareness.

This was Owen’s first fundraising event and we are so grateful for the people in our life that took the time to come out for an hour or two and be a part of it with us. It was a smaller and more intimate one and we are so lucky to live in this close and giving community. More shirts and bracelets were sold to those who wanted to help spread awareness and we had so much fun with family and friends.