365 Days to Forever

I'M BACK! Hydro Mommyhood was definitely on vacation. Vacation is over. Casey told me that I had to start pulling my weight in writing again. :-) First, let me start off by saying how much I missed everyone and all the feedback you give me! During my most difficult times in Parker's journey, you all helped me more than you know. Plus, this blog has helped many families through their Hydro Journeys and gained a tremendous amount of awareness for the condition, and for that I am super grateful. Honestly, I can't believe it's taken me this long to get back to the keyboard. There have been many times in the past couple months where I could have certainly used the therapy of writing.

This time of year has extreme significance to us. Exactly one year ago, today, our lives changed forever. Parker was diagnosed with Hydrocephalus at about 11PM on March 18, 2014. I will never, ever, forget that day as long as I live.

If you have followed my blog you know that I already knew he had it merely by mother's intuition and research. It was one thing to suspect it, but it was a complete shock to actually have my worst fears confirmed in that tiny ER exam room. I immediately handed Parker to Casey and I excused myself. Thank goodness the bathroom was right next door because the sudden urge to get sick overwhelmed me. I remember not being able to see my reflection in the mirror because I was crying so hard. Thinking back on that moment, I wish I could forget everything I was feeling, but I can't. The fear and anxiety that plagued me at that moment, has continued to plague me all these months.

That was it. In a 5 minute conversation our lives changed forever. I remember the doctor said, "I am so sorry that this has happened."

There were no words from us. Just complete heartbreak. As you may remember, Parker had his first brain surgery the following morning, just shy of being 3 months old. The days, weeks and months to follow made up some of the worst and somehow best moments in my entire life.

Worst: My baby had brain surgery 3 TIMES in one month. My heart stopped every time he was on that operating room table. We could not hold Parker for over THREE WEEKS.

Best: My baby made eye contact with me! He LOOKED at me for the first time and really saw me. Tears sting my eyes when I relive that moment right after his first surgery. Then there was the moment when I held him for the first time after not being able to hold him for weeks. It was as if I was holding him for the first time after he was born...only better.

From that moment on I vowed to never take a single moment with him for granted. To this day, I pick him up and kiss him and love him EVERY chance I get. This child is smothered in kisses every day. My faith was tested time and time again, yet somehow, God showed me his support when I least expected it and often in ways I didn't think possible, right at about the time I was on empty.

I would love to tell all of you that after our initial "bump in the road" things got easier. They didn't. Our challenges and fears have probably quadrupled since we've been home. It's a new kind of bump in the road in which we find ourselves completely responsible for. There have been missed milestones, more tests and doctor appointments, and horrible therapy sessions. The reality of the situation is...Hydrocephalus sucks, but it's our reality, which makes it suck even more because it's not going away.

Being a parent has got to be, hands down, the scariest job on earth.  I am sure anyone can agree with me on that. You are in charge of this tiny little being until they aren't tiny anymore. Soon they eat by themselves, wipe their own tushies, talk back, graduate high school and hopefully move on to be respectful, law abiding citizens (right, Dad?). Well somewhere in between them being tiny and wiping their own tushies is where we are with Parker.

Next week he will be 15 months old. So far, we have mastered army crawling and sitting. Obviously most children his age are running circles around him by foot or by hands and knees. This is where things get tricky and heartbreaking for us...Parker seems to be a normal functioning 15 month old mentally, physically he is still incredibly behind. No matter what we do, he just can't advance physically. It. Breaks. My. Heart.

It's gotten that it affects me so much that I can't handle Facebook. I damn near cried at Monkey Joe's because I realized that Parker was the biggest, non-mobile, child there.

"How old is your little guy?"

I reply, "He'll be 15 months next week."

"Oh."

Cue awkward silence.

Yeah. OH. Believe me lady, it's confusing to me, too. I don't feel like I owe complete strangers an explanation as to why Parker is just sitting. When I am confronted with situations like that, which has happened MANY times, I often want to have verbal diarrhea and tell them everything he has been through. I feel like I have to tell them.

"Stop judging me Judgy Judgerson!"

"Yes we call that battery looking contraption on the back of his head a SHUNT! He needs it to survive!"

Turns out, Hydrocephalus isn't nearly as exciting to most parents as it is to Casey and I. So, I do resist the urge to get out my phone and show parents diagrams of shunts and how they work.  I just take it and vent later. At the end of the day, I am my own biggest judge. It's a battle I fight with myself often. She probably had lots of questions, but more than likely, not judging me. I was judging me. Judging myself is like a fulltime job these days.

Am I doing this right? Am I making the right choices? What else could I be doing?

Those questions will keep you up all night! Lately, it's been plaguing Casey and I as we reach these important milestones in Parker's life. We just want him to have an easy toddlerhood because his infancy was everything but easy.

You are probably asking yourselves, "Why do they judge themselves so harshly? " I wish I knew why.  Human nature I suppose. I think any good parent, at one time or another, questions their ability.

In moments like this, where I look back and reflect on how awful life was this time last year, I realize it's not that bad. Parker is healthy, happy, AAADORABLE, and minus the slight hydro flare-up a couple weeks ago, is doing relatively well.

I must ask myself a very important question, is it really that bad?

Well...the honest answer is, no. It's not that bad. Put on your big girl pants and buck up. He is happy, healthy and hasn't had a surgery since last April. It's just easier to see the bad things and place blame on yourself, rather than on a condition you can't yell at.

Our biggest challenges this past year have been patience, faith and perseverance. It's hard to keep up on those things when you aren't winning battles. We are, however, winning the biggest battle of all and that is keeping Parker happy. Overall, he is a genuinely happy guy! His smile is contagious and his strength inspires me every day. Even when he was hospitalized last month he still hammed it up and somehow reassured me everything was okay. How he does that, I don't know. He has a gift that I can't even understand or put into words yet.

I cannot wait to see what he does with it.

In the mean time I hope to be able to dedicate more time to my hobby, writing. I have lots of funny stories that involve pooping, hospital sassiness, and more! Who doesn't love a good poop story?