Just a quick note to let you all know that my darling friend Emily was kind enough to let me be her featured Mad Lib Monday guest this week on her blog is this REALLY my life? It’s all about commitment, so I hope you enjoy how it turned out!
Thanks for including me Emily (@emihill)! It was so much fun and I love how my mad lib turned out. (Defenestration game – ROFL!!)
Now, completely unrelated, but I can’t resist telling you anyway, today marks only ONE WEEK until Valentine’s Day… or, if you really want to know, around our house, it’s the holiday formerly known as Valentine’s Day.
All because it is this little sweet pea’s very first birthday!!! Only one week to go and I just can’t believe it! It has been a crazy year, which has often made me ask exactly the question Emily asks, if this is really my life. It is, and I love it, but I have to admit, it has been quite a roller coaster.
This picture of Miss Kayla
(or K La La, aka Baby Kayla, aka Kayla Boo – depending on who you are talking to in our family) is from a few months ago, toward the end of summer when she was almost completely off her oxygen during the day.
Around the end of September K. caught a cold. Just one little cold. That’s all it took. That little cold has hung on and on and on, finally resulting in RSV last week. She has weathered the RSV like the little champ she is, but the past 5 months has been a non-stop sick baby fiasco. She is fantastic and absolutely couldn’t be sweeter if she tried, but the issues with her health have been draining, and I’m sure will continue to be.
That said, there have been a lot of great times too, and I am trying to make a conscious effort to focus more on those times so that the hard things are more bearable.
So, since there are any number of things that I have missed out on with having my baby girl with Down syndrome, I want to tell you about the things that make me lucky. This is going to be an ongoing effort for me to work at being more positive. The Down syndrome isn’t actually what bothers me anymore, it is the health problems. I need to remember that and cherish K. for the incredible little person she is. Our family definitely would not have been complete without her.
My friend Dara
recently reminded me that there is NO reason for me to feel like I need to only share the pictures of K. where everything looks perfect (aka, no oxygen) – especially since those pictures don’t happen often lately. So, just in case you haven’t seen her recently (even though she actually hasn’t changed much in recent months) here is one of my favorite pictures from this Winter. I’ll be sharing more Kayla-cuteness here all week for her birthday celebration, so if you need a daily dose of cuteness – stay tuned!
We have tried about everything we can think of to keep her cords from getting too tangled up (something you just don’t have to worry about when you have a wifi style baby). It never works, because K. loves playing with her cords, so no matter what, she has almost always tangled them somehow. This time in particular was because right before I took the picture above, she was sleeping like this:
I hope you don’t mind me sharing more about K. here, but I want to spend this week before her birthday really celebrating her with you so you’ll know what we’ve been up to for the past year. We are actually trying to focus on milestones more than dates, but every baby deserves a great birthday celebration!
Thanks for hanging in there with us!