Today was a good day. Of course I am not an expert yet, but I am really loving focusing on creating joyful moments. Even when the kids are screaming and the babe is not happy, I am learning to try to enjoy each minute... despite our circumstances being far from perfect. Though our lives are not filled with fortune or fame, I have all that I need. As we were taking the kids to school this morning, I walked behind the trail of my family and the song from The Greatest Showman came to my head... "It's everything you ever want, it's everything you ever need, and it's here right in front of you." Sometimes finding joy is a matter of opening our eyes to what's right in front of us. I opened my eyes as much as I could today; and I sure loved my view .
And I hope your friends are many
And your laughter's always loud
To help you when you're lonely
And pick you up when you're down
I hope your eyes shine bright love
And learn to see the light
Take the time to listen
Decide yourself what's wrong or right
“Baby Girl” by Will Hoge
Well, yesterday went quite well in the dental department. They were able to thoroughly clean and examine her teeth. 5 xrays showed awesome healthy teeth with no cavities! So i will continue my WWE moves on her to brush her teeth every night cause i swear if Children Services saw my pin moves on her, they'd stroke out 🤣 they scraped off all the yuckies and now she shows everyone her pretty clean teeth. I have stalked my phone all day, carrying it with me everywhere and not letting it out of my sight for a second (even during my damn OTF workout) so that i dont miss THE phone call from cardiology with the results of her echo. Im going crazy.... but this is my sweet Lilly in preschool today, with her bloody nose since she had to be intubated through her nose this time due to the work being done in her mouth. Happy and carefree... #LillianGrace#heartbaby#downsyndrome#theluckyfew#morealikethandifferent
In Therapy this week my girl is making so much progress. She talks a bunch at home but has been very quiet at therapy, and this week we got her saying so much, felt like a little breakthrough, “bubbles, truck, help and ball”... also check out this crazy concentration to stick the mouse into the cheese for #Occupationaltherapy . Plus my wonderful friend @kacamilly for getting Lexi a similiar Game so we can practice this OT at home 💕🎁
As I sit down for the night ready to bury my head in school work I decided to scroll Facebook quick. And I’m so glad I did. A sweet friend of mine @amybuboltz_mn tagged in a post so I clicked on it. It was complete strangers commenting about how they loved seeing Sophie on the @target website. How she had the best smile and how precious she was. My heart legit started crying. She stands out to people who don’t even know her! I honestly don’t care if she ever modeled again BUT I do care that people like her are getting to do things in society and they are being accepted to do the same things as everyone else! Their hearts are seriously gold! If you don’t know someone with Down Syndrome, you should! You are missing out! #happiness#nothingdownaboutit#downsyndrome#theluckyfew#targetmodel
Most days I completely forget he has #downsyndrome , it isn’t something that I put a lot or any thought into. But every once in a while it slaps me in my face and takes my breath away. Not because it’s a bad thing in any way, but because it brings some realities that can be tough to face. This week we met with a lawyer. Although my parents are in good health they are getting older and no time is promised. We spent an hour talking about wills, inheritance, special needs trust, medical directives and guardianship. Along with all the normal emotions that come with that kind of planning comes the necessary “evil” of guardianship. I understand it and the need for it I really do but it hurts. Using words like incompetent, unable, incapable. They are words I hate to associate with him. They have their legal place I get that but they don’t belong in descriptions of him. I plan to write a blog post about this process but tonight...tonight I just want to pretend that we don’t have to stand in front of a judge and say those words. It’s just a reminder that parts of life are hard but I wouldn’t trade a moment of life with him. I mean come on, that smile??? #downsyndromeawareness#downsyndromerocks#theluckyfew#nothingdownaboutit
We're a book-obsessed family. Chris and I first connected over our shared loved for literature. Someone's always reading a book in our house. Our kids' book collection is out of control.
So, can I confess something? When I got Ace's diagnosis one of my fears was that he wouldn't love reading the way the rest of us do.
That now seems silly because neither of my older boys were as committed to their books when they were toddlers as Ace is. He can sit and focus on his books, signing the words he knows, for long stretches of time. His ability to pay attention to stories is one of my greatest delights. He is a book guy, through and through. Of course he is.
I can't wait to see his nose in a book when he's 8 and 12 and 16. He'll be reading all the great stories, of course.
Three days of school was all it took. Swipe to see today’s picture. Apparently hand, foot, mouth is going around again. I feel like this year we can’t win for loosing with her. She wants and needs to go to school. Even if just a couple days a week, in just those three days she has made huge strides in her speech, self-feeding and following instructions. Yet here we are again. Prayers please. #gretchenannefarmer#mymagiciscontagious#sickagain#downsyndrome#theluckyfew