Tuesday, January 17, 2017

and now it is 2017.

This is exactly what I didn't want to do - have months of catch up, months fly by with nothing to say, but I guess this is also the exact situation I want to be in... a boring normal life.

I started 2017 with one goal: to say no. I want to do things that I feel is enriching us all as a family. I want to sit at home and read books instead of finding a sitter to hang out with friends. I want to eat at home more, use the time we have leisurely instead of rushing everyone to bed. I like when A and S get home at night and I let them freely spend the rest of their evening just chatting instead of having to do a ton of work. I am saying yes to photography that I really want to do, I am saying yes to sitting on my couch with best friends and wine, I am saying yes to people who I see as actually adding value to my life. But I have spent years and years "knowing everyone" and realized recently that everyone does not know me how I would like friends to actually know me. So far it is working out seamlessly. I actually have date nights with friends and their kids - and get to see my kids light up WITH me. It really is such a joy.

I have always had this "fear of missing out" gene in my body. Or a guilt that people will be like "where's amanda" but it isn't even necessary lol How narcissistic to think that, honestly. No one cares and that is okay. And the ones who DO care, understand. I am still spending time with friends that I adore, but its just on the best terms ever.

Reese started her Dabrafenib and we are almost at 3 months taking it now, morning and night. She has no side effects really - maybe the weird skin on her feet and fingers, but that is it. Her MRI is in 2 weeks and I am honestly excited to see it. She feels good, looks good. I am hoping for miracles.

Holidays came and went, of course. Thanksgiving, Christmas, family and fun. The pictures will tell the stories in itself. EJ was home all break and so we really got to spend a lot of quality time hanging out and just being lazy together. We had the CCBD christmas party, performed at "home for the holidays" in downtown mckinney, and then, all of a sudden, Aidan turned 10 and Corbin turned 3. And all my babies became official preschool age and it was beautiful and heartbreaking at the same time. Our family, as a whole, is growing up. A child in double digits seems insane to me. Just as insane as it is to not have a baby to tote around. How did we get here so quickly.

Aidan and Sawyer had two separate dance conventions and competitions. While dance takes up a lot of time, seeing their eyes light up, the smiles on their faces, everything, when they are on stage, makes it all worth it. They truly love it and that to me makes it easy to drive them around everywhere lol The studio is doing "Annie" this year as the spring recital/production and Aidan gets to be Annie --- and I will likely melt into a pride induced puddle on the floor when I see it the first time. She works so hard and it is going to be an amazing spring.

I also started a 365 for this year and it has been seriously amazing for me. I wanted to pick up my camera more and now with starting a Facebook page about it, everyone is joining me and it seriously is such a huge motivation. Years ago, when I did a 365 for a few years in a row, I realized that there was beauty in the monotonous. I have spent years, now, finding beauty in the busy. But now that we are somewhat boring again (lol), it has been so wonderful to document such normal things. Most people know that lifestyle photography is where my heart lies - but it does so, first, at my own home.

Here are my first 16 days, plus some in december. Which you can follow along with these (and others) on instagram, of course.


Wednesday, November 2, 2016

another year passes.

In 2012 we went to scare on the square.

I was excited that all the girls were dressed in their super hero costumes, but reese was still so sick. She had been to the ER, they said she had UTIs, I was not very content in that answer, but I am not a doctor, so I guess I was wrong. She slept all the time. I barely got her awake to put on her costume. Her right arm ("bad arm") had been not working for months. Doctors sort of gave us lame answers - like saying she broke it (even had an x-ray!) and putting it in a cast. Maybe radial nerve? Maybe should get an MRI? but she had been throwing up so much that we could never get her sedated. I find it ridiculous that none of these things added up for any medical professional, but it wasn't in our time - it was in someone else's hands.

Downtown, I know now, that people saw her eyes act strangely, then, but didn't know how to tell me. It doesn't matter, of course, because when EJ saw her eye float later, they went to the ER... again... to finally get a CT scan.

Thus began the worst days of my life.

Everyone stepped up: friends, family, strangers. We were instantly surrounded by doctors and nurses and sanitizer and fear, but also by love and prayers and warmth from all over the world.

When we got there, she was actively dying in a way... as she had been for days. Her heart rate was somewhere in the 30's and 40's. She was barely responsive. The fluid in her brain was so much, but even that day she would have times of totally "okay", so as a parent it seemed insane to think it was so bad inside.

...but now we are 4 years later.

She had to get another haircut the other day bc it was getting so long and needed to be evened out. This year, the girls were "decades" and we went to scare on the square to dance the night away with our very best friends.

We are oddly in a same type of waiting space as we have been before. Only, this time, instead of wondering what we are working with, if she will need more surgery, asking naive questions about chemo, checking to see if her body will handle her own pituitary functions... we are just waiting on a new medicine to be (hopefully!) approved while we go to dance, have dress up days at school, laugh at the dinner table, cuddle at nighttime.

4 years is a lifetime. I look back on what we've done in 4 years and am so grateful to have so many friends be by our side along the way. Here's to many more halloweens filled with dancing and laughter and love.