My sister! My strength!

My sister. So incredibly awesome & talented. This arrived today from 800 miles away wrapped in love with her handwriting immediately comforting me. A perfect fit for this sickly lady and my honey/lemon tea. The poet is not in me today, but it was so neat to see MY words, my heart’s work, on this cup. #thoughtful #loved #mysister #okwithchange @meganclark28 via Instagram http://ift.tt/1xcIIQp

Half-lit Tree can still be Half Full

One minute you’re enjoying your hard work and the next half a tree goes dark! This is a problem. A problem that may not get fixed this Christmas. At least it feels balanced. And honestly I think it would bother me more if it was the other half, so there’s me looking at things half full. 🙂 #doh #anothertreegoesdark #fiftyfifty #okwithchange via Instagram http://ift.tt/1x184nk

A Mighty Moment for Accepting Change

I didn’t necessarily need a cry today, but I sure needed the smile that came with this great blog post. I see the world differently now with all our change, and I love this beautiful moment in time captured by a mom, a juggler, maybe an over-thinker, like me.

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TheMighty.com has just opened my eyes to a new side to our world. I am very grateful to have time to be slowly accepting and learning about what Reese’s world means for us as a family. We have been able to take the past six months and become ok with the change we are facing.

We don’t have a status or a diagnosis that labels her, yet. But we are embracing the opportunities and the knowledge that lies within the special needs community, especially for the autistic spectrum. As a non-verbal almost three-year-old, Reese is behind. No question. There IS a question about why, so until we know for sure, we are coming at the problem from all angles, as always. 🙂 Continue reading A Mighty Moment for Accepting Change

Ahhh Melrose how I love thee… Shall I count the ways?

Ahhh Melrose how I love thee… Shall I count the ways? #smell #breath #clean #rosemary #relaxing #teatree #sleep #okwithchange via Instagram http://ift.tt/1qDe8j0

Snippets of Fall 2014

I’ve gotten too far behind on posting. It’s been dizzying how much keeps changing and how I can’t keep up with time moving forward. So consider this a drop in the bucket. A collection of moments that I have string together with a few photos.

We are in awe of our little warrior. Every day brings something new I just had to stop writing it all down. Now I have forgotten things I said I would document. But the good news is I have been there for everything and I am so deeply moved by her love for me. We have a very special bond.

It’s not just for me though. Her personality keeps breaking through and she now sees her brother in a way that is closer to the beautifully innocent admiration you see between bigs and littles. She also seems to know who is the boss. She doesn’t shy away from letting him know when he is in her way and an elbow or a grab of hair always gives us a giggle. (We will work on good behavior next year.) Right now we are just proud of our tough sassafras.

Gaining confidence

I think we are also seeing her be a little more sure of her body and her surroundings. We have been able to enjoy the park a little more this fall and she recognizes it now. She got very brave in the photos where she is holding into the rope, she is also standing on a rope. I was propping her back for a while and she was testing her legs and arms. But I could tell she had stopped using me for support and she was really pulling herself to center to hold balance (core tummy muscles) and we grabbed this shot if her being pretty proud of herself.

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Independence is another challenging topic with her. Of course we are so excited for her to be understanding some new concepts of life. We are even cautiously trying to give her those moments of exploration and research. Sometimes I feel like she’s in this soundproof glass house and we are supposed to just watch her and not interrupt her little world. But we take every opportunity we can to reinforce communication and the practices we want her to follow.

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The ride back from Austin after Thanksgiving was a funny example. D sat in the way back so I didn’t have my usual assistant shuffling things around in the back. Plus, we had too much stuff crammed in around the kids and the dog that My sweet, innocent little girl found herself right next to a big bag of pirates booty. (White cheddar rice puffs) The pic doesn’t do it justice but not only was she reaching in and serving herself handfuls of puffs, she started to put some back when she was done. No matter that a couple were slightly gummy from a test drive in her mouth. All this to say the girl will figure things out her way and we are merely here for supervision and her own protection. Otherwise, it’s best if we just stay out of her way when she gets an idea in her head.

So that’s just a taste of Reesey introducing herself to us. It’s spotty and many times it’s almost like it never happened. She reverts back to a fussy baby in my eyes and I forget she was just climbing on a stool trying to wash her hands. It’s still an emotional ride, but we will take it for sure!

Messy Art

It is a work of art isn’t it? Somewhere in this chaos she finds comfort. I don’t know why. Takes her 15 min to create the mess, then she sits in the middle and soaks it all in. #mylovebug #sorting #obsessing #herway #okwithchange #loveforbooks via Instagram http://ift.tt/1wYNSlp

Small hiccup, but Bubba has her back

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via IFTTT

All the love in the world in this little guy’s #heart for his sister, our #epilepsywarrior #bestsisterever #bestbrotherever #purpleribbon (Poppy helped with Reesey’s face) #eftxphotochallenge #Reese

Let your light shine

Wrote a little something for all the #epilepsy families out there just getting started. #ontheblog (url in profile) #okwithchange #2yearsinthemaking #november #fight4epilepsy #epilepsyawareness #eftsphotochallenge #TEN #shineyourlight via Instagram http://ift.tt/1vxdBBw

6 Reminders for Families Learning to Live with Epilepsy

As part of our commitment to sharing about epilepsy every November, we are making a video this year. There was too much info to fit and this is something I thought might be a good blog list.

Our list of reminders for families first getting accustomed to fighting this battle.

1.  Face the monsters. Don’t be afraid to let others see epilepsy. It’s hard, but it’s also a powerful way to get people to understand you need their support. A very brave woman has a TED talk about how we each have a closet we are afraid to come out of. I think as parents we feel vulnerable opening up to others because it feels like we’re admitting we’ve failed as parents, because we can’t fix this problem without help. Don’t be afraid.

Continue reading 6 Reminders for Families Learning to Live with Epilepsy

Connecting the dots of my ever-changing life. Realizing I'm ok with it, and you should be, too.

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