Moments That Horrify and Amuse

Spencer is so engaged in exploring the world around him right now. Everything is so very, very interesting…even the things we don’t want him to get into. Cell phones, electrical cords, bits of fuzz or dirt on the floor, the dog’s MOUTH!

In the past few weeks I’ve had moments that almost made me cry with laughing and shudder at the same time. Here a few that stand out...

• When Spencer discovered his non-functional thumb while eating breakfast one morning … then promptly starting batting it with the other hands like a cat toy…

• Said incident then progressed to tugging on the thumb during diaper changes for amusement then gentle nibbling to explore this fascinating new “toy.” (When instructed to stop doing this, he looked at me as if I was crazy. “Why, mom? This is cool.”

• When Spencer discovered his bottom, reaching around and displaying a surprise for Mom…I’ll leave that one to your imagination. Ewww.

• When Spencer leaned down, his mouth forming a wide, perfect circle to kiss the dog…on the nose. Yes, he was successful. And yes he has tried several more times to do so.

• When Spencer flat-handedly smacked me in the cheek…

• When Spencer grabbed my cell phone out of my hand, looked at me proudly as he shook it like a rattle…then promptly launched it – with force – into my fresh glass of water. The phone, predictably, died a quick gurgley death.

• And today, in his eagerness to give me a hug he launched himself at my face - mouth open - giving me a way too sloppy kiss right on the mouth.

Here's a video of him doing one of his favorite new tricks: Playing in our water glasses...

It’s only going to get more amusing and fun from here, right?

Bittersweet Revelation

Tonight when - for the second night in a row - cuddling and/or rocking just wasn't cutting it at bedtime and laying down in bed instead DID, I realized something: My baby is truly becoming a big boy. He doesn't need to always snuggle with mom to go to sleep now.

Wow. Where did the time go?

One of my favorite things has and will always be baby snuggles. Spencer and I have spent many precious moments together snuggling before bedtime - playing eat the baby's fingers (during which I act like I am eating Spencer's fingers and he giggles), hair/face tickling, reading books, chest to chest, snuggled in the nook of my arm...the list goes on. And I loved every single minute. I'm sure he hasn't completely ditched the nighttime cuddles, but it certainly reminded me to cherish every single one even more. He's only going to get bigger!

Now I don't feel a single bit guilty for letting him fall asleep for his afternoon nap when I was off work last week and rocking longer than necessary. The best feeling in the world is your sleeping baby on your chest.

This are two clips I took of Spencer sleeping in December. So precious, peaceful, perfect.

A New Year, A New Version of Me

A lot can change in a year.

In 2010…

I endured 30+ hours of labor and a hemorrhage post-partum, confirming my long-held fears of childbirth…

I became a mother to a sweet, happy little boy and finally understood what it meant to be truly, viscerally connected to another human being…

I became a neurotic worry-wart, due to my son’s unique medical challenges…

I became consumed with fear, worry and anger because of said medical challenges and the possible implications for his future…

I mourned the idea of a perfect family – mom, dad, two and half kids, dog and picket white fences …

I questioned the motives of God and the universe, pondering what I did to make my son deserve to be born with such challenges…

I blamed myself for doing some unknown thing to cause Spencer’s birth defects, then tried to find other sources that I could blame, but came up with no concrete answers…

I stopped letting myself feel joy, instead dwelling on the negative and sometimes unintentionally hurting the people who were showing me the most love and support…

I watched friends struggle with fertility, while incompetent parents seemed to pop up at every corner…

I was jealous of friends and strangers living their seemingly perfect, happy lives with their kids or embracing pregnancy with the hope and joy I felt robbed of…

The list goes on.

But, I also was humbled in so many ways. And for that, I am grateful. I am a new me. I am hardened and softened at the same time.

Spencer spent the first 19 days of his life in the care of an amazing team of nurses, physician assistants, surgeons and specialists at Cincinnati Children’s Hospital Medical Center. From day one, he defied the odds.

Doctors: “Expect him to be in the hospital for up to four months recovering.”

Reality: 19 days, we had him home – no feeding tube, no catheters and thriving. And this was after two major surgeries. Amazing.

Doctors: “Kids with this problem typically have growth problems.”

Reality: He’s climbing the growth charts and knocking everyone’s socks off developmentally.

We were lifted up by an extended network of family, friends and perfect strangers during the toughest times as we adjusted to our new “normal” and life as both new parents and parents to a child with significant medial hurdles to overcome.

We were blessed with the Cadillac of health insurance plans through my work. To date, we’ve racked up close to $400,000 in medical bills and paid a few hundred out of pocket. I don’t want to even imagine where would be financially without that coverage.

I’ll spare you the long, tedious details because if you read my blog, you are more than likely one of those close friends or a family member. But the road was long, filled with hills and mountains of emotion and stress to climb but also joy and laughter as we watched our tiny little boy, who seemed so fragile at birth, become the amazing little man he is today at just under 11 months old.

We still have challenges ahead, but if Brandon and I can be as strong as our son, I think we’ll tackle the mountain just fine. I admit: I have to remind myself of this at least daily…sometimes hourly, other times just here and there.

I can’t flip a switch and accept the situation overnight. Hell, it might take years. But 2011 is going to be a better year, and I’m committed to trying to live in the moment as much as possible. I’m going to enjoy my son and husband and the life we have as a family. The future is the future. Why dwell on it? It will come when it comes. Life is short. Why not be happy? These are my new mantras.

I read this great story today, by Paul Daugherty – a local writer in Cincinnati—talking about his daughter, who has down’ syndrome. Predictably, it made me cry…mostly because he so unconditionally loves his daughter and is fiercely proud of her, despite other people trying to define her by her seeming limitations. I am ashamed of myself sometimes because – in worrying about the “what ifs” of the future, I know I am trying to limit Spencer. That is such a disservice to him. He has never failed to amaze me. I’m sure the same will be true as my baby grows into a man.

Here’s a link to Daugherty’s story: http://sportsillustrated.cnn.com/2010/writers/paul_daugherty/12/22/jillian/index.html?eref=sihp

So, I’m going to re-enter the blogging world…maybe not as often as in the past…but I’m going to celebrate the joy of Spencer here. It is so infectious; I want to share the joy he brings to my life with my friends. By sharing, I am also giving myself a little self-therapy, which is a big part of my personal path to healing.

Spencer teaches me new things everyday…about love, joy, myself, the world and other people, and what truly matters in life. It is enlightening and completely frightening all at the same time.

Here’s to a happy and healthy 2011!

Workin' 9 to 5

I've been back at work for two weeks. Every day, I have to remind myself to love my job and not be bitter that my son's best time is being spent with other people that I must trust to help him continue to develop properly. It's hard sometimes, but I'm thankful for my job and the insurance it provides. Without it, we would be up to medical debt in our eyeballs.

So, you may not see many post from me as I continue to transition. I'm very selfish with my weekend time right now. So much so that I haven't returned to the shelter and I'm not sure I will right now. It's just too much.

Ugh

Tomorrow we'll be admitting Spencer to the hospital for his second surgery and I'm beginning to feel very, very sick with worry. Shame on me, when our little man is so brave and strong, right? Mommy is feeling a little weak. Damn it. I hate that feeling.

All I have to say is screw fear. I hate it -- I hate the feeling of vulnerability and sickness in the pit of my stomach. Fear makes me angry!

Please keep our family and especially little Spencer in your thoughts this week!

Moments

I sat in the chair this afternoon with a snoozing baby cuddled on my chest and I thought: wow, I am a mom and it feels so right. As Spencer snuggled against me, belly to belly, it kind of took my breath away. (This picture was from another day where I enjoyed a similar moment.)

What a blessing Spencer has become in my life. After I became pregnant...and again when we found out he had medical challenges...and at many other moments along the journey so far I've wondered: "can I do this?"-- meaning be a mom as well as be an advocate for my son.

The answer of course is a resounding, authoritative yes. Every day, I question my ability less and enjoy the moments more. The bond I have to Spencer is more visceral than I ever expected. I want to protect him. I want to protect my little family. I pity the person who first tries to judge him unjustly or hurts him in any way because hell hath no fury...

So, happy mother's day to all the mothers out there. I finally feel all those emotions you have tried to explain to me but I had to experience for myself to understand.

A Weekend with Grown Ups and Spencer Update

Brandon and I are taking a mini-retreat to Louisville to visit our friend Patrick and have some adult time. Grandma and Grandpa Harper are babysitting for us, so hopefully Spencer is a good boy! (He usually is.)

Spencer continues to grow and develop rapidly. He gives us lots of smiles, so we've captured a lot them on camera. He is also doing much better with tummy and side time. One of my absolute favorite things to do with Spencer is read him books. He gets big bug eyes and locks on to the images and looks so excited. Brandon took this picture of us reading one of his favorites: Dr. Seuss's ABCs.

Spencer also enjoys listening to his daddy play the guitar and music in general. In classic Amanda style, Spencer and I often take hip-hop boogie breaks at some point during the day.

We met with the colorectal surgery team this past Friday to discuss Spencer's next set of surgeries. We will be glad to get them behind us, and we have an incredible team of family and friends who are going to help us transition him when I go back to work May 24. I have mixed feeling about returning to work: I'll be glad to get back to being part of a professional team, but I know I'm going to be pining for Spencer time for sure!