Fragility

I’m not the praying type, but I find myself desperately pleading with God these days.

I am so scared all the time, sometimes that fear comes out as anger, other times uncontainable crying. I start to let myself be happy, feel solid then something cracks the fascade, revealing the reality below: A 33-year-old woman who feels a bit broken, like a wound that won’t heal because she is absolutely petrified she will lose her son. My amazingly funny, smart and energetic little man, almost two and ready to conquer the world … just if his body will keep up.

The unknown is what is so hard. Right now, the big unknown is how well his kidney is functioning. We had testing done earlier this month and now his urologist is out of the country, unavailable to give us answers, until after Christmas. In the meantime I called to see if the nurses could tell me anything … the only thing they could tell me is that our urologist wants us to get a urinalysis and have further evaluation with a different nephrologist than we typically see.

Waiting, waiting, waiting. Getting as many hugs and kisses as I can get, showing him all the love I can muster and praying desperately for him to not be taken away from us prematurely.

I am trying so very hard to accept the things I cannot change, have the courage to change those I cannot and the wisdom to know the difference, all while keeping my anger at bay. But sometimes it is a minute-by-minute battle.

Skipping

Spencer has graduated from mere walking and running to skipping -- and he thinks it is absolutely hilarious. He sings "skip, skip" as he does it. He is learning so much every day, I have to stop and really listen and watch to absorb it all.

His imaginary play is soaring. He loves cooking at his new kitchen (pouring spices into his dishes, serving up coffee to Brandon and I, etc.) and he will rock a baby doll and give it a bottle. Last night, we were playing with play doh and he made a circle then turned in a circle to further illustrate. Today we were at a lunch and he suddenly wanted me to know that he was my baby, grabbing my arm forcefully with a beaming smile and hugging close saying "i your baby" -- again and again.

Ah, bliss.

Joy!

So fun! Spencer is so fun, despite his masterful toddler tantrums.

Tonight,we boogied to the "chew, chew, chew" song I made up for dinner time, played ring-a-round the rosey, row-row-row your boat until you tip ... capped off with big pucker-up kisses for both Mom and Dad before sweet little man snuggled up for bed.

Ah, joy.

Being “Inspirational”

A friend said something to me last night that took me back a little. He told me that Brandon and I were inspirational. As our friend said this to me, I was looking down at my son – hugging my legs, laughing and giving me a big toothy smile and I thought: Spencer makes this a lot easier to deal with because he is such a beacon of light and good in our lives.

I’ve always wondered if our friends thought we were a little crazy (because we can be) or neurotic (that’s a given) but I’ve never thought of us as inspirational. To me, it’s our son that is the superstar … how many of us could be as resilient as he in the face of so many challenges … again and again? We are the parents just doing what has to be done - making the hard decisions, worrying and fretting, tricking our son into eating, crossing our medical Ts and Is.

“Parenthood” has definitely been an unexpected journey. One thing has become clear to me: Nothing is guaranteed. Life is unpredictable in both a painful and beautiful way. I’m learning to embrace this, despite my “good/bad, fair/unfair” way of thinking. It is a very, very hard thing to come to terms with.

I read an essay in the New York Times today that really resounded with me. Clearly, this family is facing something very different than Brandon and me. But the idea of a dragon parent makes so much sense to me – fierce, loyal, ready to jump at any minute to protect, love and comfort our“young.”

Read the article, but only if you want to cry and re-evaluate your own perspective on life. Either way, I expect everyone to begin to referring to me as dragon mama from now on; B would prefer dragon dad.

Faith and Hope

I've decided I have a problem with faith.

It's amazing how a life experience can rock your fundamental being. For me, that life altering experience was having Spencer, my little beacon of sunshine but also the source of my shift from Pollyanna Sunshine to Pissy Petunia.

I know most my sense of anger comes from fear, frustration and lack of control as well as a bit healthy dose of "why me?" What I am learning to change, however, is how those self-destructive feelings can be stopped. For a long time, I let them completely consume me ... eat at me, like an insidious bacteria starting at my core and spewing out through my every pore before I realized it was even there.

Some days, that still happens. And some days, I let myself feel angry and say something nasty or cry because it feels good to have a release. But I'm trying really, really hard to put that nasty Pissy Petunia back in her closet when she starts spewing.

Tonight she reared her head during Spencer's dinner. I could feel her sharp claws scraping at my insides planting thoughts of "Will he ever eat 'normal food? How much longer can I put on this dogged effort to get him to eat enough food to grow and be healthy ... if it weren't for that darned constipation issue it wouldn't be that big of deal. Who am I kidding? Of course it would - he has to eat GD-purees, for goodness sake. I just want to be able to give him a bite of my effing macaroni, which he is looking at so longingly right now."

Sigh. Breathe. Get a Grip.

Spencer smiles, eagerly reaches for Brandon's guitar as he is playing, smirking when he feels the cord vibrations. "Done, down" ... he is pulling on his bib and gesturing comically at me like: "Hello, mom. Are you listening?"

Ok. But just one more bite, pleaeease. No, it ain't happening.

I throw in the towel and try to pat myself on the back for being persistent and getting him to eat something other than milk. But it hardly ever feels good enough. That's probably the super-sized guilt I like to carry around about everything, large or small.

So, I let him down to watch Dad play the guitar and excuse myself from the room to get a grip. I soon hear "moooom" from the base of the stairs. I come down and am greeted with an exuberant leg hug and beaming, tooth-bearing smile. I return the hug, who can resist? When I sit down, Spencer bounds into my lap as if I had been gone two weeks not two minutes.

Ah, I want to have faith. I want to believe that his future is boundless, full and happy. It scares the absolute shit out of me to picture it any other way. Because dang it my kid is amazing. AMAZING. Resilient, happy, smart and oh so precious to us.

I can't explain how incredibly unfair it feels that he been given the challenges he has, the obstacles he's already overcome in his short 20 months of life. I also can't explain how completely broken, vulnerable and helpless this situation has made me feel at times. I feel like I have failed him in some way, though I know that isn't true. It's just easier to blame myself that accept that this is just what happened to him, to me, to us.

It will never be OK that Spencer has the medical diagnosis he has, but I'm determined to live with it in a way that shows him it's OK to be him. In fact, it's better than OK to be him because he is Super Spencer. I haven't met another kid I liked better and I'm sure I never will. :)

So, faith is hard for me. And faith gives people hope. The reality is faith is easy to have when things are going well and nothing bad happens to you or those you love. It's when times are hard that faith is bruised and battered.

Spencer Sunshine

Spencer is such a funny guy at this age - he is changing so quickly, it's sometimes hard to keep up. He makes us laugh and smile all the time - whether it is busting a manic dance full of jumps, running and spinning or turning our legs and a random box into an obstacle course. He is so much fun and he is quickly telling us all about the world around him - saying "stroller walk" and insisting we go for a walk. "Mow outside" is another phrase we hear a lot. Tugging on his bib saying "done, down" then throwing his hands up in the air and saying again "all done" when we don't immediately let him off the hook at dinner...the list goes on. He is incredibly smart, clever and funny.

Today, every time he saw me he wanted to hug my leg. I'm not talking about a lazy, drive by hug ... I'm talking full throttle, beaming tooth-showing smile with bright eyes looking up at me saying "mom." I feel so blessed to have such a sweet, sweet little man.

Right now I am a little obsessed with Christmas present planning for Spencer. We'd like to buy him a piece of outdoor play equipment that he could play with inside in the winter. He loves climbing and he is quickly getting bored with all his indoor toys, turning our lamp into a stripper pole and the stairs into a jungle gym. No good. Any ideas on what brand/specific piece of equipment to buy from the moms and dads who might read this blog?

These two are my top contenders right now:

Step2 Panda Climber

Step2 All Star Sports Climber

Beautiful, Fleeting Life

It is a little too easy to get bogged down in the day-to-day grind, but I've learned anything during my time as a parent is to focus on the present -- as hard as that may be sometimes-- block out the noise and enjoy every magical moment. Cherish it. Chew it up, digest it and let it radiate throughout your body, making a permanent mark in your memory. That is life - the moments. The relationships. The experiences.

Sometimes I feel like that guy in American Beauty ... the world if full of beauty. Sometimes I feel like it is so beautiful that I will become consumed by it. It isn't a bad thing - it's actually a great thing, but it's a different type of overwhelmed. For me, it's the type of feeling that makes me want to cling to the moment ... never let it go. It makes me feel a sense of inevitability ... like I am enjoying the moment so much I am absolutely petrified it will disappear and I will never experience that joy again.

I know, inside my head can be a little intense.

Things I love and never want to forget:

the sound of Spencer's giggle - sometimes spontaneously erupting from him at the most unexpected times, like in the car on the way home from school

Brandon reading the "don't tickle the duck" book out loud to Spencer

the feeling of a hug with a friend or loved one after being apart a little too long

my snuggly baby, rocking, dancing, holding each other close

the pride of seeing your child learn something new ... small or large

the feeling of peace and safety sleeping next to my husband

the concentration on Spencer's face when he is coloring or building blocks and the exuberant "I found it" or "I got it" he exclaims after completing a task

the sound of the ocean

the feeling of the warm Hawaiian breeze blowing through my hair driving with the top down

the cottage in Kona where Brandon and I spent one of our best vacations

the pride of finishing a backpacking trip and the satisfying ache of my muscles afterward

the importance of great girlfriends in helping you navigate life's often tricky waters

my grandpa's blue eyes and the smell of his truck

my grandma's laugh and family parties

I could go on and on and on.

Life is beautiful. Screw the ugly stuff, it's not important. Living life is important.

Extraordinary Unpredictability

Nights like tonight are always filled with an odd mix of anxiety, restlessness and a feeling of both sheer adrenaline and exhaustion. It's a strange sensation ... like you are at the cusp of something monumental and inevitable. For me, it fills me with intense tension - I'm ready to spring, barrelling everyone in my path out of the way, holding fiercely two my little nuclear family as I propel us toward the finish line ... to the end of yet another procedure safely and without scary eventfulness.

I never imagined going through what we've gone through in the past two years. Its unfathomable to think about handing your precious child over to a team of anesthesiologists, nurses and doctors just one time - let alone eight. Tomorrow will be the ninth time Spencer goes under anesthesia ...

It amazes me that so many people have "normal" pregnancies. So many of my friends have had unexpected things happen in their journeys to become pregnant ... several had trouble conceiving, another was diagnosed with a serious personal health condition, another's child had major surgery, another had preclampsia and yet another was gestational.

Life is unpredictable, unfair and unexpected I guess. Fortunately, we've all come out the other end OK. Definitely a little pockmarked, bruised and perhaps a little wiser or more cynical ... but surviving and thriving, damn it.

Nutzo

I've decided working around science and medicine is both good and bad for my health.

It is amazing to me how my attitudes toward medical care as well as personal lifestyle choices have been altered during my six years in health PR. In a way, I miss my naivety ...now I worry about everything! Lead paint chipping turning to dust, triclosan and pesticides in hidden places, aneurysms, cancer, the list goes on!

That's my random thought of the day. Is it the weekend yet?

Mango Flavored Baby Kisses Are Even Sweeter

... ok, I guess Spencer isn't technically a baby any more, but he'll always be my baby. Tonight - after playing Lady and the Tramp with a spoon on mango sorbet (me with a two-sided plastic spoon between my teeth and Spencer eating off the other end), I got an impromptu, mango-slobber kiss.

Ah, these are the memories I never want to forget: Spencer, sitting on our living room smiling like he didn't have a care in the world, enjoying some a delicious Saturday night treat of mango sorbet.

It's easy to get wrapped up in all the hard stuff -- the ifs, the questions, the day-to-day obstacles, future fears. What is important is embracing the moments in front of you. I admittedly have periods of great success doing this and many other erratic periods of epic failure on this front. It's a flaw, I'm working on it.

After a meltdown on Friday (my most common meltdown day) during Spencer's dinner, the day after his second esophagus dilatation, we ended up having impromptu playtime in the backyard sprinkler while Brandon was watering the grass. It was so fun watching Spencer explore the sprinkler. I found myself startled by my own genuine laughter and smiles. It feels good to smile, to laugh, to truly be enjoying the moment without effort. If could bottle that feeling, I'd become a millionaire selling it.

Chatty, Dancing Man

Spencer is turning into quite the dancer ... not only does he do his patented fast riverdance/maniac run, he now has added a spin move. Spinning is very funny for everyone involved, including Spencer!

Spencer has also really begun to chatter with intention - the words aren't perfect, but he says mom, dad, this, dog, cat, out, drawer, bottle, treat, bird and some other things that we sometimes recognize. He is also a super helper. He helps us load the dishwasher, put clothes away and put things in the trash. What a superstar!

This weekend Spencer and I enjoyed our first play date with Hazel, Paula, Brayden and Sara. The little babies were absolutely fascinated with each other. Spencer was like " hmmm" boring, but enjoyed trying to touch them. He also gave Hazel a hug and a kiss the night before when we babysat her and rocked Brayden in his car seat. My big boy! Wasn't he just that small?

Laughter is the best medicine

Yesterday was a hard day, in a week of hard days and sudden changes.

I was feeling anxious, angry, stressed and short tempered on yet another trip to Children's to see yet another specialist.

Then, our super-energetic son, gave me this beaming smile, leaned back to look at me and decided to try and blow a zerbert (wet, sloppy kiss) on my belly - even though he was in my arms. Brandon and I exploded with laughter. The real kicker was when he tried to do the same to his own belly. So funny, that little man of ours.

Cast Be Gone!

Today we got the cast off - whoo hoo! Now Spencer is in a splint full time for two weeks, then back to night splinting only. He really didn't let it slow him down at all - he learned to climb up the stairs with the cast on. Imagine what he'll do once the splint is gone, too. Here comes trouble!

The Irresistible Question

It is the question that is inevitably is asked of us, particularly me - more and more often.

"Are you ready for another one?"

"Thinking about another one yet?"

There are many variations. My reaction has changed from one of sheer exasperation to a somewhat patient sigh (depending on who asks it.) What most people don't realize is that is such a loaded question.

Spencer's medical needs will be a life long presence, more intense in these early years - but always there. It's easy to think about him having a brother or sister (remember my lingering picket fence movie fantasy), but reality is a much bigger question.

So, who knows. Ask me again in two years.

A Bump in the Road

Today was a big day at the Harper house. The administrators at Spencer's day care decided that they weren't comfortable caring for him any longer.

We're disappointed, a little angry and a little anxious. The frustrating part is that they just aren't willing to be part of our team during the recent short term setbacks we've been experiencing. Namely, challenges with table food due to a narrowing of his esophagus at the original surgical site. It's been two weeks. 10 day care days. Evidently it spooked them enough to turn their backs on us, most likely because his morning caregiver escalating the situation.

But it's done. And hopefully there is a silver lining to the situation, one that results in an even better situation for our sweet, happy and thriving little man.

This was the first time we've had to truly defend Spencer -- justifiably so -- when someone else was trying to single him out and not include him. It won't be the last time, for sure, but it was a big step.

So, a message to anyone who tries to unjustifiably make our son feel "different" in the future. Go ahead- I dare you. But you answering to not only emotional, protective Mama but also logical, fiercely dedicated Dada.

Oh yea, beware. These Harpers are tough as nails.

Parental Instincts

It's amazing how fiercely protective, loyal and devoted parenthood makes you feel.

I'd do just about anything for Spencer to ensure his well-being. Brandon would too. It's such a surprisingly intense feeling that boils over at critical times. It reminds me of a bear, protecting a den of cubs. Hopefully I keep my claws to myself ... unless absolutely necessary, right? But who wouldn't do whatever it takes for this kid? Such a beacon on sunshine.

A Great Night

Tonight was such a great night, despite having to go to the grocery with a hungry toddler ... at least we now have groceries! Whoo hoo!

Spencer really seemed into eating tonight, perhaps because he didn't have dinner until 7 p.m. He even ate some green beans and kept most of them down, so I was beaming with joy given our recent feeding trouble. Baby steps!

After dinner, Spencer danced all over the house, fed the dog her treats says "daaaw" over and over again, got in some quality wrestling time with dad (and dad got a few scrapes of his face from the cast), play time running up and down our sidewalks, bubble time, flower sniffing time ... phew ... I'm worn out just recounting it all.

So, right now I'm pretty high on life. Spencer is sleeping soundly and Mama and Dada need to eat dinner.

Happy almost weekend!

My Second Home

Sometimes, when end up walking the halls of Cincinnati Children's Hospital Medical Center it feels like home. Today was one of those days.

We had an early post-op follow up with orthopaedics and Spencer was raring to go, running up and down the cooridors smiling and laughing at everyone he saw. As I chased him around, I watched the various employees walk by I realized -once again - that I recognized many of them. Some, we had had direct interaction with, others I've just passed many times in the hallways. It was disturbing and comforting all at once.

Then I saw Karla Hicks walking toward me, her eyes on Spencer with a look of questioning familiarity. I called out "you treated him" and she got this look of recognition in her face and said, "is that Spencer?"

Karla - or Dr. Hicks - was the resident who called us every morning from the RCNIC to give us a report on Spencer during those hard 19 days he spent in the hospital recovering after his initial surgeries. She became a comfort to us, a steady source of information and understanding in the dark and blurry whir that was the first month of our life with Spencer. I am forever grateful to her and the RCNIC staff. Karla, the nurses, the general surgery fellow (whose face I will never forget but whose name was never fully clear to me) ... they pulled us through.

So, as I walk through Cincinnati Children's, it feels like home. I am comforted by the hospital's bustling corridors, its staff who smile as your son scurries by them. In the thick of medical tests and procedures, it still feels like home ... just a scary version of it.

Tomorrow we head back to Children's for our regular kidney testing and follow-up. This is always a scary day filled with anxiety for me. Please be thinking about our family.

Through the Eyes of Babes

...the world is much more beautiful.

Who knew weeds were so wonderful, except when looking at them through the eyes of a child? Spencer adores dandelions and loves picking them. During a recent jaunt to Ault Park, he was entertained for a long time by holding them up for us to sniff. (this is his his sniffing face ... too funny!)

Last night, I followed him around the yard for a long time as he casually at a homemade fruit pop and watched the ants crawl all over our firepit patio. He then scurried over to Mary and Ken’s yard to admire their cool flower pinwheels as the wind made them whirl. It was the perfect summer night.

This morning, he jumped on Brandon and me to give us a big hug. Then while Brandon was showering we went out on the porch and watch the garbage truck – yet another fascinating activity! Ah, what a great way to start the day. Team that with the sweet smell of honeysuckle that wisped into my nose on the walk from my parking lot at work …

Exercise ... ah how I've missed you

Pre-baby, exercise was an unquestioning part of my day-to-day life. I felt so much more alive, energized and happy after a good workout. That has been put to the side for almost two years now, first with the limitations imposed on me during pregnancy and then with the demands of balancing work, home and medical appointments.

Tonight, I went to a group mat class at Pendelton Pilates. It was AWESOME. It reminded me how much I thrive on regular exercise. So, as part of my ever evolving self-therapy I'm going to try to get back into the gym at least two times a week. The zoo walks just aren't proving to be enough.

An Uphill Battle

Sometimes, my life feels like it's turned into a constant uphill trek, never ceasing to allow me to catch my breath and take in the scenery. It is exhausting and frustrating all at once ... because I really, really, really want to take the time to enjoy the scenery.

The past few weeks we've been struggling with table food choking/barfing incidents with Spencer and borderline constipation. Things just haven't been completely normal ever since surgery. It is very hard to watch Spencer nibbling on something new, seeming to enjoy the experience then gag and violently throw up. The same goes for when he is getting constipated - random crying that something is hurting, but not being able to express what it is to us ends up in him crying. So very, very frustrating when I know all he'd really rather do is run around the living room jabbering, marching and spinning in circles giggling.

So, in an effort to embrace my self-enforced mantra (grant me the courage to change what can be changed ... the serenity to accept what cannot be changed ... and the wisdom to know the difference), I've placed numerous calls to Spencer's medical team to help alleviate problems, knowing full well it will most likely result in more tests or re-instating reflux meds and possible dilations on the esophagus front and a radical diet change on the constipation front.

Spencer's new thing: spinning in circles and walking backwards. He also really enjoys hugging our neighbor, Caroline.

Spencer's Joy

...it's infectious. Tonight, he decided to prance around the living room dancing to "Hey Jude." He stood on his tip-toes and swung his non-casted arm above his head, smiling and so very proud of himself.

Pure joy. If you don't smile when watching him ... well, there is something wrong with you!

We went to the Blue Manatee and Knight Toys this afternoon to escape the yucky rainy weather on our last day at home as a family post-op and to celebrate Spencer turning 15 months. As usual, Spencer was all about the ladies. He marched right up to a little girl who was about 2 years old and pointed at her with a bit smile and babbled. She looked confused, but he was happy.

What a happy, sweet little man we've been blessed with. The best Mother's Day present I could ever be given is his continued happiness and health.

Surgery Over, Family Time at Home

Spencer's hand/arm surgery went well and we are glad to have that piece behind us. Now we are hanging out at home while he recovers and enjoying some family time.

Today it was gorgeous outside, so we took a long walk then played quite a bit outside. Spencer loves being outside. Today, he discovered the joy of putting sticks in a bucket and pulling our neighbors solar lights out of the flower bed. He also enjoyed some quality walking/slight running time with Mom up and down the sidewalks - cast be damned, it's not slowing him down!

My favorite thing that Spencer is doing right now is leads me by my finger all around the house and yard. It's so sweet. He also likes to sit on the bottom step of the house and swing his legs then he just grins like he is so proud. I love watching him experience this confidence in himself. He does the same thing when he achieves something new: for example walking backward pulling a toy or getting on and off his car all by himself.

Today, I got him to eat by squirting baby food from a pouch in his mouth. He found it hilarious. he also found it hilarious when Dad made the book do a monster chomp and almost bit his fingers.

So fun! I'm thankful for this time at home with Spencer, even though he's a little grumpier than usualy. Heck, I'd probably be a lot harder to deal with if I had the surgery he just had!

Twas the Eve Before Surgery

...and all through the house, people were chattering but I was quiet as a mouse.

Ok, quiet or snippy. Not much in between.

It feels surreal to be back here again. Spencer's last surgery was in August - that seems like a blessedly long time ago. I am admittedly having a hard time keeping the anxiety and emotion at bay tonight.

Please be thinking and praying for my sweet little boy Wednesday during his surgery. He is such a superstar.

Mr. Personality

Spencer is so funny at this age.

A few quick things I've enjoyed watching him learn this week ...

• backing up and sitting on the bottom step of our house and swinging his legs
• backing up and sitting on my lap
• getting on and off his car all by himself
• leading me by my index finger

Today, we gave him his Easter/pre-surgery gift. He really enjoyed raking the floor with his new rake and when we gave him his little watering can with water in it, he promptly watered himself. The water was cold - but it didn't stop him from repetively dumping the water on his lap until it was gone. Then he stood up and pulling his pants up and looking at them like "how did that happen?"

Funny stuff!

Episodes of Unbalance

By Friday, I usually feel completely unbalanced and something fairly small in the whole realm of things tips me over the edge. Tonight, it was mild choking incident during dinner with Spencer and slow-moving No. 2 day with Spencer.

I get so angry with myself for these radical flips in mood that lead me to full emotional breakdowns. Its such immature and ridiculous behavior yet I'm not sure how to stop myself from tipping over the edge.

Spencer is happy. He's playing and running all over the house. He does every night. So why does he make me feel so sad sometimes? I know why ... it's not just one reason.

I watch him just radiate joy and I so desperately want to participate in his energy 150 percent, but it is dampened by this ever-looming sense of fear and worry for his future on so many levels.

I am angry at the situation and the fact that he hasn't started out on a level playing field ...

...that no matter what I do or have done, I can't change reality. This is reality, this is his life, this is my life, this is our family's life.

... I know deep down that I have still not fully accepted this. And it hurts to acknowledge that I am that selfish and stupid to be unable to change. (I guess self-recognition is the right first step though, right?)

These episodes of unbalance sometimes leave me feeling lost, alone and a bit desperate for the ability to change. I don't want to live the rest of my life feeling this way. It's self-defeating and silly.

Most days, I don't. But I could go for a once-a-year melt down instead of weekly!

My Energetic 14-Month Old

Spencer is so much fun at this age - he is always making us laugh, even when he throws a temper tantrum. And let me tell you, he is perfecting the temper tantrum. He does this little "hah hah", thrwos his head back as is to say "oh, the agony", closes his eyes and shows his teeth. It's kinda funny.

Other funny things Spencer is doing right now:

• chasing the cats and dog with his lawn mower in the house ... he thinks it his hilarious when the popping and his squeals of "TAT" or "DA" make them run away in horror.
• pushing and dragging our bedroom trashcan all over the upstairs. Seriously, coolest toy EVER!
• throwing the dog's toy to her and then unleashing this irresistible Spencer giggle... he gives the same giggle when we tickle him, which is a nightly bedtime ritual between Dad and Spencer.
• Backing up into corners, pulling a toy with him...
• Climbing over mom and dad if we are laying on the floor,
• running up and down our sidewalks going "ahhahahhahah" and, best of all,
• jumping onto piles of blankets or a spare pillow, then rolling laughing. This all started when my mom was here a few weeks ago and he was jumping on towels showing off. We then starting playing the rolling game in his room during whiny play times.

This weekend we went to the Cincinnati Zoo and Spencer had a great time playing at their playground. He crawled through a turtle shell and went down a slide for the first time. Fun stuff!

Playing the Pillow Game

Pushing the Mower

Kickin' Myself in the Butt

I've decided to try and kickstart my professional development again...I fear I may stagnate otherwise. Today I refreshed my limited knowledge of Twitter...the tool isn't super useful in my current job, but it's a communication vehicle and I'm a communicator, sooo....I've decided to give myself a new identify and work to build it: CincyWorkinMama. This is really more of who I am these days...I don't do as much animal peddling because I am too busy trying to keep everything else afloat. Any other workin' mamas out there? How do you balance the daily demands while also taking care of yourself?

The Ugly Truth About Motherhood

It's not the all roses and sunshine like the sitcoms and BS advertisemenst would lead you to believe.

It's hard.

It's often riddled with guilt and self-doubt.

It makes you feel inadequate - am I doing enough for my son? work? my spouse?

It's WORK. Sometimes it feels like all I do is work...and I like to beat myself up constantly about what work is more important.

Have I lost you yet?

Well, I'm a working mom. I used to get a lot of satisfaction out of achieving at work. Big media placement. (cha-ching, I'm a rock star.) Learned to use the new video software. (Boo-yah, resume building.) GMAT and grad school? No problem - must push ahead.

Now? Ugh. Work. Must.Make.The.Donuts.Earn.Paycheck.Feels like a completely unimportant chore.

And here comes the guilt train again...because, guess what? I'm lucky - I have a decent paying job with exceptional benefits, medical and vacation. Not everyone can say that. I have this ticking time bomb of mom guilt in my belly all the time. Spencer's medical stuff ratchets that up 10x.

But it's an internal, self-defeating battle that I know is eating me alive. I just don't know how to win the fight. One thing is for sure...it makes me feel a little bit crazy sometimes.

I've spent the past two days at home with a sick baby. Fortunately, his fever broke (after two and a half days) on Monday. Now he's just dealing with the nasty after-effects of a bacterial infection -violent coughing, reduced appetite. Although he was sick, I enjoyed my time at home with Spencer. He is so busy, even in his reduced-energy state, that he is always exploring something. It's fun to watch him figure things out. It would be so easy to miss those moments if you weren't focused on watching him play. So, that's what I've been trying to do: Give him my full physical and mental attention every time I am with him. No mind wandering, no negative thoughts. Just Spencer.

So, a few things little Spencer is doing right now...

mimicking play - imitating sounds or motions we do (for example, clicking his tongue or grabbing a toy out of my mouth, then putting it is his and holding it out for me to grab)

intentionally placing toys - on shelve, in a corner, etc - then going back to retrieve them

picking up items and giving them to me with intention

chasing the cats...he wants to catch one so bad

and -best of all - giving me big smiles followed by all-out hugs!

Much love between this Mama and Babe, even if he has taken to smacking me in the chest and, unfortunately, in the face a few times. Sigh. I'll need to work on that.

Manic Depressive

That's the way I'd describe myself lately...swinging violently high and low. It's exhausting.

Lots of things are assuredly affecting these swirls of emotions...friends welcoming new babies, remembering our own "new baby" experience then reliving the last year and thinking about the future for Spencer and our family.

I fear I'm on a slippery slope and spring is the only hope of pulling me out of it. I've felt consumed by fear, anxiety and anger lately.It's a vicious cycle - I get mad at myself for dwelling and worrying that I can't enjoy the moments in front of me fully. It's exhaustingly self-defeating.

Extreme Highs and Lows

The past month has been filled with extreme highs and lows for me from an emotional perspective.

Spencer is turning into such a little boy - asserting his independence by telling Mom what he wants to eat (or, more often, NOT eat), walking on the border of running around the house to explore everything from dog toys to his musical instrument set from Granny Lynn or his wagon from Great Aunt & Uncle Shauna and Joe and learning to throw a quality tantrum.

Switching Spencer over to table food and milk has been a challenge. He gets so hungry he sees red and can't think by the time dinner rolls around, leading him to eat to fast and choke on the table food. He has this perpetual snotty mucous that won't seem to go away, too, due to winter, school germs and possibly the TEF repair. All of this adds up to some stressful eating times. We are trying so very hard to chill and go with the flow, a message we've heard repeated so many times at this point that I just might punch the next person who says it to me. Being the neurotic control-freak that I am, I admittedly am having a hard time with it.

We've also scheduled Spencer's next surgery: the first of what could be three arm/hand surgeries. It needs to happen, but I am dreading it. UC is also going through some major budget crises (thank you, Governor) that doen't really help me relax. I'm just keeping my head down and doing my work thoroughly. Gotta keep that medical insurance!

BUT...aside from all this crap swirling around in my head, Spencer is oh so much fun at 13 months. He loves his Mama...he will often throw himself into my arms with exhuberance, smiling and hugging me. Oh, what a great feeling. And who could be stressed when you hear a baby giggle? Spencer has such an amazing giggle ... I smile just thinking about it. He also has a light-up-the-room smile. He shows it often, as he is so proud of himself learning all these new things (like putting his blocks on the dining room chair) or throwing Ginger her toy. What simple pleasures.

So, I admittedly still give in sometimes and end up crying to release all the emotion while I am rocking Spencer to sleep. (I did tonight, in fact.) But I also find myself marveling at how quickly he is changing and growing up, trying to imprint every bit of his joy into my brain.

Here is a video of Spencer playing ball with his Great Grandpa Willard during our recent trip to Arizona. He loves playing ball!

Celebrating Two Lives - One Remembered, One Just Beginning

It was a bittersweet week.

On Tuesday, my Grandma Jo - my only living grandparent - passed away. She had become pretty ill during the past six months, first with a diagnosis of heart failure then a bad fall that resulted in a broken hip. Amazingly, she survived hip surgery (despite the heart condition) but she took a turn for the worse this past weekend. On Friday, we remembered her life on the same day my son turned one. It was a bit surreal.

Two things meant the world to my grandma: her family and her pets. Both of these circles of loved ones were big - she is survived by more than 30 grand-, great-grand and great-great grandchildren, along with two grown children of her own (My aunt Brenda, unfortunately, died young.) -- and she had too many pets to count. (Anyone interested in adopting a sweet cat?)

Her funeral was the first time my entire extended family has gathered together in many years. The closest we've come to doing so in recent years was my Aunt Brenda's funeral then a family party I organized in 2009.

Seeing everyone together again was the definition of bittersweet for me. It really ticked me off that we have let ourselves become so distant, particularly for Grandma's sake. It always meant so much to her that the family be close. In fact, throughout my entire childhood she made sure that we had two extended family parties each year. Before we left the summer party, we picked a date for the winer party. We ate country food, played games and laughed often. I have wonderful memories of those times.

So, to honor my Grandmother's memory I am going to try and re-institute these family gatherings. If it doesn't work, OK. But our little family is going to make an effort to see our big extended family more often.

Today we celebrated Spencer's first birthday with a small group of family and friends. He had a great time once he warmed up to the group. His favorite present was from Aunt Anna and Uncle Hess...an earth-friendly wood xylophone. (Mommy's favorite present was the organic bamboo cotton T-shirts from Paula...I want one for myself!)

Spencer is doing great. We were put on 3 month follow-up for urology again and are considering an impromptu family vacation to Arizona in March. He weighs just over 22 pounds and measures just shy of 30 inches. He is also taking Frankenstein steps as he continues to explore the increasingly large world around him.

Here are a few pics from the party.

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!