Every week our therapy sessions go a little like this...
They ask, "Is he pulling himself up in his crib yet?"
"Nope."
Then as sure as the sky is blue they ask, "Is he able to get up from laying down?"
"Nope."
"So basically nothing has changed."
I reply, "Yep."
So, every week we endure therapy. Most sessions, Parker and I both end up crying. He cries because he's just mad and I cry because I feel horrible for putting him through it. It's frustrating putting him through this weekly and not seeing results. It's not his therapist's fault, it's not our fault and it's not his fault. I feel confident in blaming Hydrocephalus on this one.
"Gosh darn it! It's FREEZING outside and it's Spring."
Blame it on Hydrocephalus.
"I spilled my tea on the clean rug (uh hum Casey)."
Blame it on Hydrocephalus.
You all have my permission to blame what-ever you want on Hydrocephalus. It's pretty easy.
Parker was forced to a hospital bed during a very crucial time in his development. Then between healing from other brain surgeries at home, he didn't get the tummy time he needed. I think I counted over 8 weeks he didn't get tummy time, or even any time to explore floor play. So, at the end of the day, it all caught up and his physical development isn't really going so well.
As a parent we so badly want to see our child succeed. Things that come naturally to toddlers, do not come naturally to Parker. It seems like so much of what other kids just "do" we struggle with. Its excruciating to see him struggle at such a young age. We pray it's not a precedence for the rest of his life. It's pretty hard watching him cry and get angry because his mind wants to do something and his body just...can't.
At one therapy session I was in tears to the poor therapist. Honestly, it's sometimes too much to handle and I lose it.
"I just picture him sitting on this spaceship blanket watching TV never walking or doing ANYTHING, with the support of his boppy pillow, forever."
She replies, "That's not going to happen. He will crawl. He will walk."
So, the million dollar question is WHY won't he do anything?!?
At this point, they have said that they don't believe he has Cerebral Palsy or anything else physically debilitating. It's just a matter of catching his body up to his age. I mean really, 18 months is the 'red flag' age for walking. We still have three months before everyone goes into full on freak-out mode.
It's just hard to be patient and it's nearly impossible not to worry because one more long-term hospital stay will do so much harm for him developmentally. Also, we know that there was a level of brain damage at birth. Is this what the damage looks like? Who knows. Needless to say, it's frustrating. When we were told he had brain damage we were always assuming it was going to be intellectual damage, not so much physical. You know what they say about assuming...
I've never wanted a toddler to roam my house and get into trouble like I do right now! It would certainly ease my mind. That being said, Mr. Parker is very brave in his walker. He roams the house like he owns the place. Casey caught him "running and gliding" through our kitchen.
"Run...Run...Pick Feet Up and GLIDE"
It's pretty funny to see him do it. I would compare it to adults running with shopping carts and jumping on for a ride. Please, do not even pretend like you've never been there done that. We all have so I know you know exactly what I'm talking about.
In Parker's most recent therapy session we had a visit with two therapists. This usually happens once a month and I can't get a wink of sleep the night before. This is where he is assessed and "rated". Well, for the first time EVER Parker rated just below the 30% developmental delay. We are never below the benchmark and it was seriously a cause for celebration. Basically, if you rate below the 30% delay, therapy isn't always necessary. In fact, the therapist told me had this been his first ever visit to Parker, he wouldn't recommend therapy at all.
Say Whaaat?!?
Of course knowing what we all know, we are continuing full force. Sigh.
I would be lying to you if I said we tend to focus more on what he "should" be doing rather than celebrating what he "is" doing. Which, I hate to admit, but in reflection, I realize it to be true.
So, let's take a moment to celebrate what this rock star has accomplished.
1. Sitting without the support of his Boppy.
2. Rolling (won't roll on shunt side, but we don't care, who would roll on that anyway... no one).
3. Pulling himself up on the couch (with bribery-mostly paper he can rip and be naughty...no shame in my game).
4. Walking with our assistance.
5. Rolling around like a bat out of hell in his walker.
6. Standing for a couple seconds unassisted.
7. Walking the couch.
See, that's already over 5 things just off the top of my head. What am I complaining about?
He still has 6 days to learn how to walk for Easter Egg Hunts. :-)
Sunday, March 29, 2015
Tuesday, March 17, 2015
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?
.jpg)
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?
Subscribe to:
Posts (Atom)