Monday, August 18, 2014

Doing good, doing fine, so glad she's all mine.





This happy, giggly, active, vocal, plump slice of baby perfection is almost seven months and my heard just explodes with every grin she gives me.  She wakes up and plays alone for half an hour. Then when she starts getting louder, I go get her and sit her up. She smiles every time. Sometimes it's this funny bug-eyed, chin-in-the-neck and mouth-wide-open face. Other times it's softer, a little tired. She's happy to see her parents! Yay! And then we play some more. I'll set her stuffed toys up and let her choose who gets the nibble. I wait for her to fuss to feed her, but even she's crying she always flashes a smile at my boobs. She'll come off just to glow at me.

Aaron likes to flip her around and get her laughing. She doesn't really let the laugh roll yet. I like to project that it's because she's always so happy that laughter just isn't necessary all the time. She'll get a little giggle out, or talk to us as she smiles some more. She grabs Aaron's beard and blows spit bubbles in his face. Then we sit her down on the floor and pile her toys in her lap to watch her choose. Sometimes she'll fall over but she won't cry out; instead, she reaches for the nearest item to touch and work to get in her mouth. She's just that content and happy. She fusses right before naps but goes out pretty quickly.

We're sleeping a little better. It's hell when she's in bed with us, but I still love reaching over to feel her warm, small body or opening my eyes first thing to see her face. When she is knocked out her lips are pursed up in this silly puffy-cheeked way.

This journey down the parenting rabbit hole has been the most joyous path of our lives. Maybe it's because we're coming from so much pain so close to her arrival, but I just couldn't be more delighted to tend to our little benevolent dictator every day.

This has not been a struggle. This has not cost us. This has not hurt. Sure, it has its rough moments. I am sure it's going to cause us pain at some point. But right now, for both of us, we are just enjoying every single moment we can.

"Even the losers get lucky sometimes."

From Ashes Rise The Phoneix.

My friend Jessica and her wounded warrior Flip have been through it. He hasn't even reach his second Alive Day and has racked up more surgeries at Walter Reed than anyone except the guy who's been there about four years. So Jess gets on with life, gets a job working for The Yellow Ribbon Fund helping caregivers, becomes a Dole Fellow for the Elizabeth Dole Foundation, and overall just really starts doing amazing things for the community. Unlike me, who kind of spent months indoors and then got pregnant and now I just stress about everything all the time. So Jess is actually kind of awesome.

Her husband is pretty awesome, too. He's a triple who most recently walked a mile on his legs with knees. He is one of very few enlisted soldiers to have earned a position at West Point, actually becoming Captain America. He is an incredible solider and leader. He and Jess met at West Point, and while she transferred to another school, they stayed together and married after graduation and commissioning. A real American love story.

I know loss. I know what it's like to rebuild your whole life, and how weird it can make you feel about your life before injury. You might get kind of possessive about whatever choices you have left to make, and the things you have left to prove that it existed. So instead of taking the furnished apartment home, or sticking around the hospital housing for as long as possible, Jess and Flip searched high and low for a great rental so they could get their things and their dogs back. I think they are the only other couple I know besides us who did this. You just want whatever normal life you can get, even if you have build it from the ground up.

So it is just completely unfathomable to me that after they get into their rental, modify it, build a fence for their dogs, buy the best adjustable cooling memory foam bed so they both can get some sleep, fill the house with fans to keep it cool because amputees' bodies don't regulate heat well, fill the kitchen with all the things one could need and want to cook again, to have a real vanity for all the fun make up- all this little stuff you don't even think about- that it could just be gone in a few minutes.

Jess and Flip's home burned down the other night. Yesterday Jessica called and asked for a ride out to the house and lunch, which I was happy to oblige (she is the BEST lunch date ever, anyway, so I was happy to have an excuse to sip wine over sushi). I just can't get over how the house is totally destroyed. All the things they bought to make life easier. All the things they brought in from "before" injury took over. Jess said I could take some pictures and share them, so here they are:
 We pulled up to the house to find that someone had left a little reminder.
 The front porch area.
 The bedroom.
 The entrance inside the house.
 I actually can't even tell you where this was in the house.
 Flip's custom wheelchair with power assist wheels. This costs more than most cars.
 Limbs.
 The custom electric wheelchair. Even if a lot of this will work, the smell will never leave.
 Soggy insulation everywhere.
 It's always a relief to find a shower or tub that will hold a full sized shower bench.
Headed upstairs from the front entrance.
Ruined.
 More bathroom. I didn't know what damage smoke and water could do on its own.
 Flip and Jess's custom memory foam, cool gel, adjustable base king sized bed. Sleep is hard to come by for the rest of your life as an amputee and caregiver, and anything that helps feels like a god-send. I can't imagine having to swallow purchasing another one of these.
 The garage leading into the house area.
 Upstairs, outside.
 I think this was a ceiling somewhere.
 While the kitchen wasn't burned, the water and smoke has destroyed everything.
 Just from the fire.
 Jess is a cook. She loves it. This whole set of cast iron is now contaminated and can't be used again.
 The landing to the upstairs.

While the donations and outreach has already surpassed any expectations, they still need us. They have at least one whole car to purchase, and might have to pay for some adaptive equipment because of program restrictions (no one is being "mean", you just only get so many adaptations in a period). They already started over once, and knowing what that is like I can not even imagine doing it again.



Wednesday, August 13, 2014

Hurled & Birthday.

I had a birthday on the 10th, and we found ourselves out of town for it. Aaron is trying to get licensed to skydive on his own, so I got to meet some of the people who do it on the regular. They were super nice people, and all day Saturday I hung out and got to see how safe skydiving can be. Aaron knew that if I was going to make a tandem jump I would arrive to the decision without pestering. On Saturday night I told him to text his instructor and let him know I was ready to go the next day.

So on my 32nd birthday I let a giant man strap me on himself and and hurl us both out of an airplane at 13,500 feet. Even Saturday I cussed when I said I wouldn't do it. But there I was, with my husband a few people in front of me doing his own jump. He's going for a license so he can jump by himself.

I watched everyone else get sucked out; at least, that is what it looks like when others exit the plane. The camera man climbed out the side of the door to film my exit, but we didn't move. Just when I thought we were good to go, my tandem master motions for the camera man to come back in the plane. We were stuck on the seat belt! So I got an extra three minutes or so to think about what I was doing. The plane circled around, we got untangled, and began to scoot to the edge of the plane. He then rocked us back and forth a few times and hurled us out over Suffolk. I shut my eyes until we were stable, and then I began to enjoy our view. After a one minute freefall, he deployed our parachute and we floated to the ground.

I could write on for pages on the total experience, but I will reduce it to this: It worked for me because I did not have to have any responsibility whatsoever. I raised my arms when instructed then lifted my legs at the end for the landing. I'm too much of an artist-type to be able to think about things while doing something so crazy. I wanted to see the world in a new way, and I did. Aaron loves to skydive and fly airplanes and now I know something new about him. I don't think I'll hanker to do it often, but I'd do it again. I'd encourage anyone who can be amazed by the invention of man, seeing life in a new light, and just likes to get a little crazy to do it. It's amazing that I did something not terribly natural but available because some other nutjobs wanted to jump from high places and live to tell about it.

I've got some things brewing for a new series of posts and details about our impending big changes. Baby girl is doing so well; gaining and growing. I can't get over it. I have the happiest baby ever.

Sunday, July 20, 2014

Evolution.

I keep writing other things besides talking about Nantucket, a woman who exclaimed, "Oh, it's you! It's her!", a hippie widow friend in the spellbound town of Salem.

I am too exhausted to even recount the details I enjoyed the most within the last month. I am mustering the effort though to write at least a little bit of something, and remember the time where I would choose to write before I would eat or sleep. I loved that part of me, a small constant in the various selves I have been over the past decade (give or take).

I have been mulling over why I feel I have adjusted to parenthood so well. I mean, I think I've adjusted well. Emotionally, I have welcomed this new self. It's about the only new version of myself I have not fought. Why is it different this time?

Obviously, our Squish is very wanted and loved. We are able to provide for her and ourselves, so I don't have a lot of common external stress getting in the way of me enjoying this. If we didn't have any money or a safe place to live, if we couldn't afford formula or breastfeeding was an emotional drain, I might be struggling more.

That brings us to the very real and obvious stresses of our daily lives and disability. I mean- it's so there. My frustration comes out in horrible ways; unintelligible rage and confusion pouring from me. We were married a year before he deployed. Inside of that year, I went from my happy life in Roswell, Georgia to a happy but strained newlywed period in Mannheim, Germany to being completely shocked that I landed in Watertown, New York with my new husband. It had been a very tumultuous year for us both. Six months into a very rough deployment he was injured, so literally we have not had any peace our entire marriage. Every half year or so brings about another major life change. I desperately need some peace, but this feeling would exist even if Squish hadn't come along. As a result, I consider this part of my life as factual as our existence. It just is, so it's easy to remove it from the equation since I know it'll be there when I bring it back in. Or something.

So the reason this has worked and I haven't cried too many tears over who I am now is because I am a professional at this. I have stared at a few strangers in the mirror but this is the first welcomed stranger. Becoming a parent has been the most delightful surprise of my life. And let me tell you, most surprises aren't delightful.

But this? And her? Man, I got this. Even though I am so tired I can't sleep, I love it. Even when Aaron and I are struggling, I know how to listen to my Squish. It's not that she's saved me or anything like that. It's just... I've been through a few evolutions of self. This one feels like an old friend.

For the first time.







Friday, July 18, 2014

Where are we?

I have this post about the Nantucket Film Festival and the documentary still incomplete, even though it's been over two weeks since I returned. We've been in Alabama for weeks now as it is and yet, I can't find or make the time to just write about this cool trip I took with my Squish, where I met an online friend's family, went to the most privileged island in our country, and topped it off with a trip to Salem.

I am so drained. We are desperately trying to find land to build a house to make a home. We tried to buy a house but that fell through, as those things tend to do. Everything, as always, cost thousands more than we thought it would. Everyone has something to say about what we should be doing. Patience. Waiting. Faith.

And I'm just kind of at the point where blind, unfounded faith is all I have left because I can not possibly care anymore. This has been nearly three years of never being where we thought we would be at a point in time. Recovery. What goals would be met. Success. Failure. So many setbacks. It's not all been awful.

Of course not.

But it's not even close to what I thought we'd have going for ourselves. Hell, I thought DC would be home. We'd get careers, not jobs, build that kind of future. Now I don't even know if I'll finish my degree. No clue for either of us.

And yeah, yeah. God laughs at the plans we make for ourselves. Have faith. Just pray. Look at how far you've come! Well, if the standard is simply not being dead-then folks, you are setting the bar too low. We have further aspirations for ourselves than that. We can even have normal goals and dreams and try not to consider disability as a determining factor.

But I'll be damned if disability doesn't get more votes than the actual people involved. More say. More concern.

I'm bleeding out here and lately my only joy has been my utter surprise in the delight motherhood has been. I almost feel a disconnect with those who struggle with their new selves. I suppose I had to get to know a new caregiver self, a new kind of wife inside me, so getting to know myself as a mother is old hat, at least in the sense of finding a new side to my existence. I am no longer surprised at how surprised I can be with whoever I am these days. Squish is a happy, happy baby who does new things every day. Each morning she gives me or her dad smiles that could end war. Everything about her is sweet and sound and genuine hope that will not kill. Hope in your child doesn't hurt like the other hopes you can lose in your life. Literally everything else can and will take from you without giving back. All Squish has to do is let out a rare rolling giggle and my whole day is made.

Happiness is a choice but some days it's just easier to get lost in my daughter's smile than paint one on of my own for others.