36 Random Acts of Kindness

Tomorrow and Saturday, ST and I turn 36. Yes, 36, not 26. In my mind, I'm 26. Maybe that will change when I hit 40, but I hope not!

Instead of presents this year, we're honoring each other by doing 36 Random Acts of Kindness. We are planning most of them, and leaving a couple for spotaneity. We're including the kids, and my awesome mom is watching Jackson during his nap so we can get them all done.

We started making our list and found some cool cards to pass out. It's been really fun planning and coming up with ideas. We can't wait to get started!

 

 



Here is the wesite for the cards: http://www.itshueilove.com/2011/11/32-random-acts-of-kindness.html

Just the vessel.

An amazing thing happened to us this week. Was running errands and a woman started chatting with Jackson. He signed something back to her and then said something unintelligible (I understood :)) I explained to her that he could hear, but that he was non-verbal and used ASL. We started talking and she was asking lots of questions about him (I love to talk about my cutie so it didn'...t hit me until later that she was much more inquisitive than most people). I explained to her that he was a surviving twin and we were told that he might not survive, that his cerebellum isn't growing like it should be, that he is cognitively intact, that he crawls, that he isn't in pain, that he just said, "I love you, Mommy" for the first time, that he is a joy and a blessing and that he makes everyone around him better. She suddenly BURST into tears and left the room. I had no idea what had just happened.

Turns out, she's almost 3 months pregnant with her first child. She started spotting a week ago, they ran tests, found out that the baby's brain isn't growing properly. Her and her husband were given the decision to terminate or carry to term and risk a 'possible non-viable baby' in her OB's terms. They have to give her OB the decision by tomorrow. She had asked God for a sign to help her make this very difficult decision and said as soon as she heard me say that Jackson has a brain disease, she knew God was telling her to keep her beautiful baby. We sat in her office and cried and prayed and cried some more.

My son, my beautiful, beautiful son, is moving mountains.

 

 

A New Me. An Awakening.

I got a haircut yesterday. But not just any haircut--THE haircut. The one where I sat in the hairdresser's chair feeling like a girl (in my mind, I'm still 26) and got up feeling like a grown-up. But not in a bad way. In a 'you've turned into something lovely' kind of way. I sat in that chair with my eyes closed and listened to the girls entertaining Jackson. I heard the scissors and felt her hands on my head and thought about that golden girl with the long hair and her arms around her boyfriend. We were 19 and had no idea of what was to come.

Who knew? Who knew I would be so grown, so changed by this beautiful life? That girl would have never cut all of that hair off. It was as much a part of me as that mop on my husband's head (which is now shaved, by the way). Who knew I would have the strength to lift my son, to support him as he takes steps, to give him a voice, to navigate this scary special-needs world? God knew. Not me.

I felt changed when I got up from the chair. I wanted to hug that long-haired girl and tell her how proud I was. For getting through a dark, dark time and never losing sight of the light. For finding a really good guy and holding tight. For raising 2 confident, kind, and compassionate daughters. For pushing and fighting and cheering and loving on this beautiful boy we were given. It was the pre-wheelchair, post-wheelchair haircut. It was the "you are working really hard at being the person I intended you to be" voice of God.

Not just a haircut.

Hello lovely.

Oh my poor, sad, neglected blog. Thanks for being patient with me. A year?? Really? Shame on me. Let's just pretend I'm not a super lame blogger and carry on.

Now then.

Simple Sundays

My favorite day of the week always goes by so fast. The kids relish having Daddy home ALL DAY and they always have a list of "Daddy Fun Day' activities. No matter how busy the day gets, I always try to pay attention to the little details and soak them up. My kids are used to me following them around all day with my camera, and I sometimes have to remind myself to take it off and join in the fun.

I get a lot of really good pictures of my children. I think it's because I trained them early on with chocolate. Now they hear the beep of my camera's focus and look up and smile. It's hilarious. My favorite pictures, though, are sometimes the one's where no one is looking, esp when it's S.T. with the girls.

I love this picture for so many reasons. Every Sunday, S.T. blow drys the girls' hair. It's their thing. Jack wanted to join in the fun, but was having a hard time supporting himself and lifting his arm up. Maggie is helping him, even though it meant that she got bonked in the head with the brush a couple of times. I love that she is giving him the support he needs without doing it for him. I love that she learned that from us and that she recognizes that she's doing good. I love that my husband takes care of his girls and is teaching them how they deserve to be treated.

I love Sundays.

Time To Process

Right before Christmas, Jackson was finally diagnosed. After waiting 2 years for answers, you would think that it would be monumental. It was...kind of. The neurologist told us with his quiet way, "Your son has cerebellar atrophy." And we all just kind of blinked at each other. "The cerebellum controls gross motor, which explains everything." Still blinking. So we went home and hugged our son and said 'cerebellum atrophy' over and over until it rolled off our tongues. I told myself that I would get through the next couple of busy months and we went about our lives.

3 months later... Maggie's birthday is over, Christmas is over. We got through Jackson's 2nd birthday and had a moment to breathe, and it all hit me. My son. My baby...
The journey that we've been on with him hasn't been easy. From the very beginning, I knew that something was wrong. Lots of specialists, lots of tests, and lots of unanswered questions. We pushed hard from the beginning that he be treated AS A PERSON, not as his symptoms, and we've been incredibly blessed to find people that do just that. Fast forward to December.
Jackson was in the middle of developmental therapy and had a cluster seizure. Thankfully, his therapist (love her) recognized what was happening. Previously, we had been getting ready to go the mito route (mitochondrial diseases impact energy storage in the cells, possibly explaining his low muscle tone) and do a muscle biopsy. Instead, we spent 2 days at Wake Med. He had a 30 minute EEG and an MRI. As soon as the neurologist walked into the room, I knew. It's never good when they bring a whole gang of people with them. After the on-call neurologist gave his speech about all of the things that were wrong with my son's brain, I remember turning to the nurse that had been with us for the past 2 days. "Tell me what to ask. Am I asking the right questions?" Cerebellum atrophy. Blah blah blah. Not sure if it's dying or just growing slowly. Blah blah. Seizure disorder, silent seizures, 2-3 a day. On and on he went. I remember sitting in the rocking chair with my baby on my lap and my tears falling in his hair. I remember looking at the spikes on the EEG that were my son's seizures and thinking that I just wanted to go home.

Home. Pediatrician. Neurologist. I held my breath and handed his neurologist the test results I'd been rolling and unrolling for days. "Tell me what this means. Is his brain dying?" So he started to look at his computer, at the test results. "No. NO! Look at my son. You know him. Tell me what this means for MY SON." And bless him, he closed his computer and looked at me. "Based on my knowledge of your son and my clinical observations of his progress over the last 2 years, no, it is not dying. Growing slowly, yes, but not dying." So now we know. We know what we know and God knows the rest. And that is good with me.

Welcome

Welcome... to my crazy, wonderful life.

I've been tossing the blog idea around for a while and finally decided to just do it! Not sure what I'm doing yet, but that's how most things start, right? Even if I'm the only one to ever read this, I will have my place... To write and to put my pictures of my stinkin' cute kids and to be able to look back and remember. I'm a busy mommy, and I don't always record those moments. The ones where the kids say something hilarious, yes, but also the quiet moments that define my family. So, again, welcome.