Tuesday, July 24, 2012


I have felt like writing all day. No topic in particular, just witty sentences or "brilliant" realizations kept coming, and I needed a creative outlet. But I am trying this thing called prioritizing. And writing to let go of some creative juices is not one of them. Quality time, obligations and even the dreaded cleaning are. And now that all that is done (floors scrubbed and all), nothing is coming to mind. So I have no idea why I am writing other then I had planned to all day.... writing for the pure pleasure of it.

Summer kind of felt over when we got back from up north. Only the sticky, miserable Florida heat lingers to remind me of our somewhat distinguishable season. I am ready for school to start, for routine to set in, and for holidays to look forward to. Oh, and yes, cooler breezes so we can play outside before 5pm. We have been enjoying sporadic evening trips to the beach. Something that I always talk about doing and actually have been doing. Worth every spec of sand in my car.

I am thoroughly enjoying my new walking buddy, looking down to the top of a golden blond head of hair, a small pudgy hand wrapped in mine, and stiff Frankenstein legs forcefully moving forward. So close, baby, so close.

Ever since I first listened to my little girls perfectly beating heart, I have been waiting for the other shoe to drop off. We have been hospital free for so long, pain free for too long, our bad news bucket remains barren. I walk taller each passing day with positive strength looking up, but a small part of me still fears the next set of bad news, whether that be with Fiona, one of the boys, my husband or my self. Its been a long time since life was continually this good. Healthy, happy, thriving good. I guess right now is my time to count my blessing, for they are many.

Fiona amazes me daily. Every day, its something new. A new word, a new sign ( finally starting to pick up on a few), a new move, a new grasp of a concept. Recently, she has been able to distinguish her brothers apart, not a small feat considering half of our friends still can't do this. She is learning words can get her what she wants, and her list of words continues to grow. Mind you, the majority of her "words" all start with B and therefore all come out sounding the same... brother, bottle, book, baby, bath, bounce, ball, beans... all sound like "Ba" or "Baba". But along with her little pointer finger, its communicating non the less. Bath is the current favorite. I find her frequently standing at the tub, one leg up on the edge, calling "Bbba....bbba..." Princess gets what she asks for.

She has been very clean recently.

Cracking the whip with discipline seems to have started paying off. A smidgen of respect is showing itself in my boys and at the least they have stopped telling me that I am not their best friend, as well as the more stinging, that they hate me, when I get stern. Never thought the  "I hate yous" would come at the ripe age of 4. Long way to go, but no longer completely losing my mind over a losing battle. A couple weeks away from their first day of VPK, and I am crazy in awe over how mature they have become in 4 years. My babies are now boys.

I have been enjoying reading the stories from the NDSC convention that have been rolling across my news feed. Considering the other major thing I was seeing was the tragedy in Aurora, CO, its nice to see some of the good that is going on in the world. I am so thankful for all these amazing organizations that are out there giving me hope for Fiona's future. NDSC, IMDSA, IDSC for life, NDSS.... thank you for all you do in raising awareness, research, community and camaraderie. Some day, I look forward to attending one of these conferences with my designer princess.

Right now, though, no time or funds for long distance conferences. Spending my tightly budgeted time with the four people I care for most. Sporadic beach trips, pool days, and lots of couch movie nights is nothing to complain about. Life is good.

Instagram @shannonblaeske


  1. I hate that we live life worrying about the other shoe to fall. I feel the same way since we have hit Hailey's first heart-versary. I love your little walking buddy! Your children are absolutely gorgeous!


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