Parenting is hard.

Parenting is hard. I think it's even hard for parents of "typical" kids, though I wouldn't exactly know. I know we're all exhausted, that's a given, right? Yet because of the idiosyncrasies of my children and the unique challenges they face, it's difficult to give up their care, even to the most well intentioned village, if only for an evening away. We're ever vigilant, always on guard, and yes, definitely over protective.

I also imagine that all parents worry, mine still do and I'm grown with children of my own! But maybe parents of typical kids have a little less to worry about. I know there are commonalities among what parents worry about, I just feel like parents of kids with disabilities have a greater number of those worries at any one time. I'd start a list, but I'd like to maintain some semblance of denial.

I can imagine that raising kids is like a roller coaster ride for most parents. There are enough highs and lows to go around, though I think that parents of "special" kids might be experience higher highs and lower lows. Milestones are not taken for granted or expected, instead they are hoped for and celebrated. We flinch when parents joke about the "agony" of having a mobile toddler to chase around. When our kids can stack 3 blocks we jump up and down, much like a parent might do when their child learns to ride a bike. And a milestone as simple as shoe tying may be something we never witness. I'm actually still waiting for that one, and my boys are 13 and 7. Yes, in the grand scheme of things, not such a big deal, but an example of the little things we don't get to take for granted.

The lows on our roller coaster are followed by loop-d-loops, aka the grief cycle. We grieve for what our kids are not or will not be able to do. We grieve for the future we imagined, then turn to the task of creating a new one. We learn quickly that there really are no guarantees, for reals, no joke, seriously. And though coming to terms with that makes life "easier," we're still sometimes resentful about it.

I'm not sure that I'm doing a good job of articulating what it is that I'm trying to say. The emotions I'm experiencing at this moment come and go, in various degrees and for various reasons. Tonight it's because I, along with a few dozen parents, sat through a 3 hour meeting with the special education directors and superintendent of our school district. The purpose of the meeting was to address parent concerns regarding reorganization of special education services due to budget cuts. 

What this boils down to for me, right now, is that I am faced with making a decision of where Parker will spend first grade. Will he continue in his cluster class? Or will he go to his neighborhood school? We also had to make this decision last year. The question isn't as simple as it may seem, there are several factors to consider. I know it's just first grade, but it might as well be college, that's how the weight of it feels to me. I'm afraid to choose because I don't want to make the wrong choice, if that makes any sense. And it's only in hindsight that I will know if it was the right choice, or more accurately, the better choice. 

So yes, to wrap things up before my venting turns into droning, I believe that my experience might not be too different from what it is now if I was parenting typical kids. And though most parents of typical kids probably don't have over a dozen doctors, therapists, clinics, etc... listed in their contacts, I do know one thing we definitely have in common, love for our children.   

Ski Lessons

After Porter's incessant requests for ski lessons, he got his wish. Last week was his first lesson provided by the National Ability Center, a world renowned program that allows for people of different abilities to participate in recreational activities. We are very fortunate to have access to this service so close to home.

On our way up last week, Porter assured me that he was going to be awesome because he is "one-of-a-kind." He definitely has had quite a one-of-a-kind determination and persistence since birth. Not being able to something the "typical" way has never been a deterrent. Porter just finds another way, a different way, an alternative.
After arriving at the ski resort, checking in, and picking up equipment we finally met the instructor. Both of us were surprised to see that Porter's instructor has a physical disability and skis using adaptive equipment. Truthfully, I was surprised, Porter thought it was cool.
There were many different physical and intellectual disabilities among the ski and snowboard students. It was such great reinforcement for Porter, who seems to notice all that people are able to do, and not just in spite of their limitations. I think it's great that Porter can see in others what he sees in himself, ability.

He's such a great kid. I'm lucky to have such an inspiration as a part of my life. I am grateful to watch him tackle his latest conquest. Cheers to lesson number 2!

Easier?

I know life isn't easy, but could it be a little easier? Just every once in awhile? I'd even take every once in a long while.
We started meeting with an orthodontist over 2 years ago, suggested by our dentist. So 2 1/2 years later, with a mouth full of more teeth than he has room for, Porter is still not any closer to being a brace face. We have been ping ponged between his dentist, orthodontist and oral surgeon. It has been recommended that we pursue more expertise, possibly out of state, which we started doing.
In the meantime, I switched his dentist who at his check up wondered why we hadn't been in contact with an orthodontist. When I explained the run around we'd been getting, he set us up for consultations with two different doctors. We had one of those appointments today.
The recommendation: go to the craniofacial clinic at Primary Children's. BIG SIGH.....
It seriously took almost 3 years to figure this out? And I'm not just blaming the doctors, I blame my seemingly intelligent self too. We are essentially back to square one, going back to where Porter started and stayed the first few weeks of his life. He's seen more than his share of doctors too, so we're all wondering, why at 12? Why not at 6? or 4? or 9?
I'm obviously oversimplifying the story, but I don't have the energy to rehash all the mixed messages and incomplete diagnosis we've dealt with over the years. I'm just hoping for answers, Porter is too.
I just need to vent and rant just a little. I know that there are others struggling much more than we are, with challenges much greater. I just wish that every once in a long while, something could be easy. Until then, I will focus my frustration on whatever needs to be done to get Porter the answers he so deserves.

Mom, Mommy, Mother...

As the beginning of the new school year approaches, and I prepare to return to work, I must reflect on an age old argument. And by reflect on, I of course mean to get on my soap box about. Sorry, but I must vent, just a little.
Let's start with a question: When your kids address you, do they call you "Stay-at-Home Mom" or "Working Mom?" I think not, so why do we do that to each other? We're all moms, right? Stay-at-moms work hard and working moms don't love their any children less.
The saddest thing about these assumptions and others regarding different types of moms, is that they mostly come from moms and are directed to other moms. We are harder on each other than our children and spouses could ever be.
Being a mom is not easy, no matter the forum or circumstances. I have been fortunate enough to experience both sides, working during the school year and staying at home for summers. Motherhood is a tough, 24/7, tiring and rewarding job for ALL mothers.
Let's end with a question: Why aren't we more supportive of each other in this challenging yet magical endeavor?

Kellie "Like"

Sunday morning Clint says to me, "You're not being very Kellie-like," followed with, "What happened to go with the flow?"
Kellie "like." Hmmmm.  What exactly does that mean? It means something different now than it did 10 years ago. And though Clint was applying it to a couple of specific situations, it really applies to most aspects of my life. I don't believe I'm a different person per se, just that I think differently. Here's what I mean:
Kellie-like then meant a plethora of wrist watches and Franklin planners. Now it means NEVER wearing a watch, losing track of time and managing my calendar instead of my calendar managing me.
It meant believing that things happened for a reason and now believing that good and bad things happen and you make reason from it, as you choose, for better or worse.
It meant being more cynical and suspicious while now I can't help but give everyone the benefit of the doubt and believe good can be found in every person, often to the point of naivete.
It meant not wanting company because the house was a mess and now it means not wanting to miss out on company even if the house is a mess.
It meant getting by on being deceptively fit, and now it means being a runner.
It meant files, ledgers and balancing the checkbook, and now it means that Clint is bewildered as to why Directv won't let him order the fights because the bill hasn't been paid. (Thank goodness he opened the one that threatened to shut off our power!)
It meant being the go-to-girl for graduate school projects and organization to becoming the girl that was going to everyone else for due dates, instructions, and follow-through.
It meant getting from point A to point B without any variation and now it means we might stop for an overnight stay along the way to our destination. No hurries, no worries.
I'm sure there are things that have been more constant over time, only those of you have known me before, after and during truly know. I personally feel that I've evolved more than I've actually changed, that some tendies were suppressed while others became more enhanced.

Most importantly it means moving along a continuum from judgement to more compassion, from making assumptions to taking the time to know and from taking things personally to realizing that it's so much more than just about me.  

Which is why I went with the flow and gave in on getting a family dog, then topped it off with a Kellie-like thing and insisted we get two! More on our new families will be posted soon!

 

Keep Proving Me Wrong!

I did something tonight that I've been afraid to do. I went to Porter's wrestling practice. Not being there was more than just about not wanting to see him fail. It was about not wanting to see what broke his spirit last week. It was about not wanting to see him fail while he was putting every once of his being into doing his best while failing. It was about not wanting to see how much easier it was for the other kids. It was about me wanting to protect him from disappointment. It was about me not knowing how to be there for him, a determined boy being sabotaged by his own body.

He's the one on top.

We actually had a little talk this afternoon before practice. In fact it's been one of a few that Clint and/or I have had with him about his wrestling venture. We know how frustrating it's been for Porter. We wanted to give him an "out" without making it seem like he was quitting or giving up. I think he took that out at least 3 times, including today right after our talk. And then at least 3 times, one time for each time he "quit," he quickly reversed his decision with an emphatic "I'm NOT giving up!" which he repeated a few times for even greater emphasis.
After our talk he went to get ready for practice, shouting "I'M NOT GIVING UP!" a half dozen times as he was changing. So I decided that in order to be there for Porter, I need to stop feeling sorry for myself and be there to cheer him on. I'm so glad he decided not to quit and even more glad that I decided to go to the practice. He did so great! And according to Clint, there has been improvement. There was not a trace of the disappointment and frustration that I saw last week.
As we were walking out Porter turned to me and said, "Mom, are you so proud of me." Yes! Yes! and Yes! Those of you that know us well, know that this isn't the only time Porter has proved us wrong. When will I learn to stop doubting this persistent, determined, and extraordinary kid?

Disappointment

Unfortunately, today was a day of disappointments. For me, it was a letter in the mail announcing the opposite of what I wanted it to. I applied for a fellowship to Korea; a sixteen day, all expenses paid, educational trip. Hundreds of others also applied, or so the letter said. Though I wasn't sure I would be selected, I acted like a would be. I was considering taking some Spanish classes, then this opportunity came up. Though Spanish would be more practical, I kind of felt like I was "cheating" on a language I was supposed to know. Now I have to decide again, Spanish or Korean? I'm leaning Spanish so I need to get over the guilt of not knowing Korean.
Disappointment is such a downer. It literally takes the wind out of your sails, the air out of your balloon, the bounce from your step, the, well you get the idea. It's not the end of the world, life or death, so on and so forth, but it is a really big bummer. 

Disappointments are worse when they're piled on. Though the second disappointment of the day wasn't mine personally, it was Porter's which effects me as his parent. If I haven't already made it clear, Porter is very into WWE, which is "professional" wrestling, or I like to call it, fake wrestling. He's a big fan and his mimicry resulted in an injury, a visit to urgent care, and a field trip to watch a real high school wrestling match. Fast forward a couple months and an opportunity for pee wee, non-competitive wrestling is offered by the local high school wrestling team. Porter, the Mountain May, and CTF (initials/moniker of his neighborhood wrestling buddy) decide to sign up.

For those of you who aren't aware, wrestling is an incredibly physically demanding sport that takes major strength and stamina. Porter is seriously lacking in physical strength and stamina and it is incredibly frustrating for him. He inhabits a body that does not cooperate with what he envisions it doing. The situation is similar to his speech difficulties. For the longest time, the way he heard himself talking in his head and what was actually being heard by others didn't match up. He once even said, "In my head I have a beautiful singing voice." Even with his "new" awareness, he hasn't given up singing. 

Tonight at wrestling, it was "Boom, boom, boom. Over and over and over and over again." Porter was relating his experience at practice tonight, and the worst part of it, it was a much younger kid that he was wrestling. Porter is somewhat trapped in his own body. I understand his frustration because I've been betrayed by mine. It doesn't work to give him the adult intellectualized explanation of his situation, he's just a kid, and a resilient one at that. This is just a speed bump on life's road, but it doesn't make it any less disappointing in this moment. 

 

Reality Check

I don't often write posts like the one I'm about to write very often. In fact, long periods of "silence" from me on the blogging front usually signal challenging times. Not writing at times like these is part of a three prong philosophy:

• giving a voice to difficulties puts a focus right where it will only make hard things harder 
• being optimistic puts energy on what's so great about life which is intended to then create an avalanche affect of goodness (I'll admit, this can also be a form of denial; "blanketing" that which must not be named)
• doing what we can with what we have by looking for using various resources (usually medically related) give us some answers and guidance with our non-typical children

Though these challenging and difficult situations often create frustration, anger, anxiety and confusion the true emotion underlying them all is heartbreak. This extends to all parents, not just parents of children with disabilities or unique struggles. All parents have their hearts pierced from time to time as they watch their children navigate growth, development, and milestones. We hurt when they're left out, when they "lose," and when they're sick. We even find ourselves wishing we could trade places with them at times to absorb their pain and shield them from misery. I have never felt the need to do that more than I do tonight, right now in this moment.  

Porter watched himself on a "video" that was taken this afternoon. How that situation came about would have been great material for a more humorous blog, but the result was anything but. Long story short, he gained a whole new perspective of himself. "I thought I was a normal boy. Why do I do that? See, there. I keep doing it?" He's referring to his "flapping." He's done it for as long as I can remember. It happens a lot when he's excited, overstimulated, emotional, etc... I told him that he does it all the time and asked if he really didn't know he was doing it. He said he really didn't, and I believe him. "I wish I was a normal boy." "Why don't my muscles work?" "What's wrong with my throat?" "I'm so disappointed in myself." "My future is ruined." "I don't like me."
My pain for his pain is tearing up my heart.

This is my parental reality. We've done a lot for Porter and he's an amazing, resilient, and persistent kid. It is definitely not normal to hear him talking this way. I am his parent, protector, and guardian. In many instances I know I could have and should have done more, but we can only move forward and look toward the future.  So now, instead of avoiding the negative and sugar coating with the positive, I will direct my energies to prong three: pursuing answers and resources that will help Porter be the person he wants to be. 

Just a few minutes ago, after a pep talk from his dad, we hear, "I love you dad. I love you mom. I'm not going to give up." And neither am I (though I think I am going to cry myself to sleep, just this once).

February 20, 2011 "You're Not My Mom!"

Porter totally called me out for bad behavior last night. I signed the boys up for UFit, an activity program at the U that pairs up kids that have disabilities with an individual volunteer. Last night was the first night and the building we needed to get to is just north of the Hunstman Center.  Upon entering the parking lot I intended to park in, I was greeted by one of four attendants who informed me that there was a gymnastics meet and I needed to be a blah blah blah member or have a blah blah blah pass in order to park there. I quickly explained that I was actually there to attend a program for my kids. He asked if I was just dropping them off, and in hindsight I should have answered yes and then stolen a parking space after they let me in. Instead, I told him that I needed to go in with them to verify registration, complete a parent interview and meet their partners.  “Well, then you’ll have to park in the next lot over.”

Ugh. Really? And then a conversation ensued that went something like, “This is ridiculous. I paid for them to participate in this program and I can’t park here?” “That’s right, only blah blah blah members or a blah blah blah pass will work.” “Tonight is the first night, I wasn’t informed that there would be an event here. I was told I would be able to park here.” “Then I suggest you mention that to the program directors.” “I have a four year old in here. You expect me to walk him across campus?” “Unless you have a blah blah blah pass or are a blah blah blah member, then yes, that’s what you’ll have to do.” By this point I’m not quite yelling, but my voice is raised, I’m frustrated, and obviously not happy.

I take a breath, give up for a moment and let him start giving me directions to another lot.  I’m trying to clarify, because I don’t want to be driving around campus lost. The next thing I know, another of the four attendants approaches my window and says, “Mam’ you need to leave now.” To which I reply sternly, “I’m trying to figure where I’m supposed to park.” “Oh, are you telling her?” he says to the first attendant. So after I get the directions, I leave, heated and in a hurry. That’s the gist of what happened anyway.

Porter says, “Mom, what’s wrong? You never get that mad. Why were you so mad?” “I’m mad because I wasn’t planning on not being able to park there. The building we need is just right there, now we have to go park somewhere else.” “But you never get that mad.” Then Porter started to get upset and continued to be confused by my behavior. By the time we reached the parking lot, he was shouting, “You’re not my mom!” and on the verge of tears. I parked and told him to get out of the car as I grabbed Parker and then we all started walking. “You’re not my mom!” and then he reached up to me, put his hands around my neck and pulled, but my head not detaching wasn’t proof enough. “Where was I born?” “In West Jordan.” “What hospital?” “Jordan Valley.” “You’re my mom, but why were you being such a brat? ‘I have a four year old in here.’ Why did you say that?”

That’s when I felt a huge mix of emotions, a little embarrassed and ashamed that I behaved in a way that upset and disturbed Porter, yet proud that the actions were so out of character with how he really sees me that I must really be a pretty patient, calm and kind person. In fact, viewed by an outsider, I probably did look like a brat, an entitled adult diva throwing a fit and trying to get her way. And I must give credit to the attendant, because he totally kept his cool, even smiling throughout as he repeated my one and only option as he attempted to direct me elsewhere.  If he hadn’t, the conversation would have escalated and then I would have seemed as mean or cruel to others as I did to Porter.

January 2, 2011 "Tough X 10"

1. He not only survived, but flourished after a traumatic birth. (note: From the beginning we were warned of all that Porter might not do – he might not live; he might not talk; he might not walk; and on and on the list went.)

2. He rolled a bowling ball off the couch and onto his foot, didn’t cry (note: Porter was under Meja’s lone supervision for all of 20 or so minutes at the time – I was going out of town for work and Clint was driving me to the airport when it happened.)

3. After finally learning to ride a bike, he rode himself to the point of fatigue and crashed into the pavement in the middle of the street. He lifted his arm and there was a thumbs up, followed by                a jump up and remount. We had to force him to take a break. (note: Porter regularly comes home from playing with bruises, scrapes and blood, as I’m sure many other little boys do, but his have to be pointed out to him.)

4. A few years ago when playing recreational soccer, he was nailed in the head with the ball. Players gathered around his bent over body, and a few seconds later he picked his head up and         there was a big smile on his face followed by a thumbs up and “I’m okay.” (note: We’re not sure whether Porter has a naturally high tolerance for pain, or if it’s a result of his brain injury, or if he inherited from me, but it’s definitely there.)

5. He swallows medicine and rolls up his sleeve and takes his immunizations like a woman! (note: We used to have to chase him around and hold him down. And of course afterwards he would realize that it wasn’t that bad AT ALL!)

6. He recently asked 13 girls to be his girlfriend in one day, rejected by all (note: Porter’s been a ladies man since kindergarten when he proposed to two of his classmates in the lunchroom, same day, then stood between them and held both their hands in the recess line.)

7. This morning, after being tired of it bothering him the last couple days, he pulled out his own molar. (note: Porter says he’s going to put this one under his pillow and if he does it will be a first. He doesn’t like the idea of someone creeping into his room at night. I know, not so tough.)

8. Porter has the opposite effect on the “toughness” of others. He turns people into softies by using his charm and personality to put smiles on their faces and warmth in their hearts. (note: I’ve seen him do this to Harley riding manly men as well as many other men who believe themselves to be pretty bad ass.)

9. He’s been working hard to overcome the anxiety he’s been suffering from since a toddler. With the help of his “worry” doctors (psychiatrist and psychologist) he’s been understanding his need for medication and learning coping strategies as well. (note: It has been tough as a parent to watch how Porter is affected by anxiety and the last year has been the toughest. There have been more times than I care to admit that I’ve felt not tough enough to fight this fight. So, along with good vibes, I’d like everyone to send a little strength my way as well.)  

10. This spot is reserved for a situation, event, or story that serves as your example of Porter’s toughness. If you choose to share, great! If not, that’s okay too, because I know you will carry that memory with you anyway.

October 24, 2010 "Horrible or Humorous"

Though it might sound like it, this is not a post about the upcoming Halloween Holiday. It’s about Porter’s first visit to the psychologist and how I didn’t know whether to laugh or cry at various times during the appointment. We are still on our quest to find answers to help Porter with his “condition,” a condition we’re not even sure about. If he doesn’t have cerebral palsy does he have dystonia? And how does the anxiety/OCD behaviors fit in? Though starting him on medication last Spring was definitely helpful, more than helpful, some behaviors are ramping up again.

When I picked Porter up from school last Thursday, his special education teacher caught me in the hallway, wanting to quickly relate a concern. She told me that Porter has been randomly standing at attention in class, for just a few seconds at a time, and seems to be focused and mumbling. Thankfully, I already knew this so I neither laughed nor cried. He has been doing the same thing at home, at the store, at Scouts, playing outside, at restaurants, etc…. I explained to the teacher that we were actually headed to see a psychologist to try and figure stuff out.
The appointment started out with me explaining some of my concerns to the doctor. Porter still has an obsession with the moon, looking out his window several times before he falls asleep. Then I explained how Porter feels the need to make sure I’m really his mom by regularly attempting to remove my head from my body when he’s giving me a hug (horrible). I also explained his latest compulsive behavior of standing at attention at seemingly random times (which he demonstrated throughout the appointment). And the list goes on and on.
The doctor began telling Porter how he’s in charge of what he does and how they were going to work on getting that “thing” under control. He said, “It’s like a monster.” Porter said, “Monsters are fake.” Doctor “Okay, maybe like a dragon.” Porter “Dragons aren’t real.” (humorous) The doctor tried to explain how the monster or dragon was just a symbol and it could really be anything, and Porter should draw a picture of it. “I can’t do that.” “Why not?” “Because if I draw a picture of God, it might not look right.” (horrible)
So Porter thinks it’s God telling him to stand at attention, or what have you, because if he does it, the people in his life will be safe. The doctor looks over at me and tells me as an aside that preoccupation with God is totally typical for kids of Porter’s age. But Porter is not a typical kid. He’s extraordinary. I told the doctor how it was hard to understand how an overly social, outgoing kid, uninhibited by his disability, could also be so paralyzed and controlled by fear and anxiety. How a kid that can manipulate a computer, spout off sport’s statistics, and problem solve his way in or out of anything feels so defeated and dumb when it comes to school work.
But that’s Porter, a study in opposites, which brings out the same in me. I regularly vacillate between laughing and crying when it comes to Porter, sometimes laughing because he’s humorous, sometimes laughing to keep me from crying at the “horrible” things that he does, the things that make me worried for him, for his future. Other times crying from laughing so hard at things like, “Mom, today I asked 13 girls to be my girlfriend and they all said no.” Really? 13? I’m not sure I would have made it past 2 or 3 and he went all the way to 13? Like I said, extraordinary.

September 20, 2010 "Buddy Walk"

Parker’s Buddy Walk was yesterday. On Monday, I found out that this year there would also be a 5K, so Lexi and I made a last minute decision and signed up. We thought it would be good practice, and a good experience to learn from before we ran our 10K in October. It was not the experience we thought we’d have, but still fun. We did finish in the top 10 (out of a dozen or so people) and we didn’t run a full 5K (the route was about ½ a mile short). But I did run around a 12 minute mile, which surprised me. I knew tand hat I wanted to step it up for the race, but wasn’t quite sure how to keep myself running faster than my normal very slow rate (15 minute mile), and not too fast (interval running) as to burn out. The answer was Cadence, an app for my iTouch. I am not a techie person, but this app is amazing. It took all of the music on my iTouch and arranged it in order by bpm (beats per minute). So I just set it at the bpm I thought would work, and off I went, jogging to the cadence of songs that kept me going and going and going. We finished the race, Lexi before me, and were happy with our efforts. We’re looking forward to our next race!The walk was fun, as always. Seeing so many cute kids, families having fun, and all of the support was great. Parker especially liked the inflatable slide and obstacle course. We could only get him away from those when he saw the train “zoom” by. It was great to see the performance of Rachel Coleman from Signing Time. Parker was following along in his own way, throwing up his arms, waving his hands, and singing. The walk was short and something Parker wasn’t too interested in, but we made him do it anyway. He survived, but was pretty much done after that. It was a beautiful but hot day, he had been going non-stop for a few hours, and after we ate, he was a crabby and stubborn little guy. Clint took the boys home and Lexi and I stayed for the raffle. Parker did get his name drawn and we got a big bowl full of movie treats. All in all it was a great day. Next year, we’re going to organize a team and do some major fundraising to celebrate Parker turning five. Stay tuned!

August 8, 2101 "Did you date my mom?"

That was Porter’s question to every guy I introduced him to. Porter would extend his arm, grip the guy in a handshake and then ask, “Did you date my mom?” I have to admit that it took me by surprise the first time he asked, but it really shouldn’t have considering Porter’s interest in all things “love.” He’s already proposed marriage, to two girls at once. In kindergarten he got down on bended knee in the lunch room and asked Evie and Maria if they would marry him then held both their hands while waiting in line to go to recess. Though I don’t know if he’s made any other such proposals since then, I do know there have been numerous professions of love. Porter wears his heart on his sleeve, actually more like on his forehead in blazing neon.

So back to his interest in me, “Did you date my mom?” “No, we didn’t date.” “No, we were just friends,” and on and on it went throughout the afternoon at the family picnic. Then we walked up to Forrest, and instead of surprising me I was about to surprise Porter. First of all, I have to say that I didn’t recognize Forrest. I saw him when I first arrived, across the lawn, and wondered, “Who is that big, burly guy?” but didn’t have a chance to follow up as Parker was off and running for playground equipment. Over an hour later when talking to one of Forrest’s good high school friends I asked, “Where’s Forrest? I haven’t seen him yet.” To which I was told that he was the guy with the beard. So I actually had already seen him not knowing it was him. I immediately headed over with Porter. I couldn’t believe it! Forrest looked like a mountain man. We started talking, I met his beautiful oldest daughter, and I introduced him to Porter who had been staring intently since we had walked up. Porter shook Forrest’s hand and continued to stare.

Then it hit me and I said, “Porter, Forrest and I went on a date. He took me to a dance.” If I remember right it was homecoming of our senior year. Porter looked from me back to Forrest in stunned silence. He began to rub his chin, and then finally asked, “Did you have a beard in high school?” No. Forrest’s daughter was enjoying the conversation and contributed a story about how Forrest, when going through airport security, immediately gets sent over for the additional screening procedures. One of the last things Forrest said before I walked away was that he was going to shave for the dinner later that evening. And he did.

April 27, 2010 "Na na, na na (knock knock)"

My boys are pretty much complete opposites when it comes to sleeping habits, and thank goodness for that! I’m not sure how well I would have handled having two with Porter’s sleeping habits. Now Parker’s on the other hand….

Parker has been sleeping through the night since he was a mere six weeks old. Some don’t believe that, but this isn’t like one of those exaggerated fishing type stories, it’s for real. Knowing all I’ve told the world about Porter, don’t you think I’d tell the truth no matter how frustrating, embarrassing, or unbelievable? You better believe it!

Parker has become a little more independent recently. Though still fairly tiny and nowhere near resembling an almost four-year-old, he is now able to open doors. Shortly after mastering this skill, he accomplished another one, climbing into his crib from the outside, even when the rail was all the way up. We knew that climbing or falling OUT of the crib was soon to follow, so we decided to take the side rail completely off.

We wondered how this would work out. Would he continue sleeping through the night? Would he try to escape from his room now that he could also open doors? The first night seemed to go off without a hitch. He laid right down like he usually does, but what would happen when he woke up in the morning? “Na na, na na,” accompanied Parker knocking on his door from inside his bedroom. He was knocking to be let out. Seriously? This was just too easy! A nap would be the real test, a test he passed yet again with flying colors. He just waits on the other side of the door until we come get him.

Tonight we tried to put him in the big bed, or I should say the bigger bed since even his crib looks big with him laying in it. He laid down, we shut the door. A bit later we went to check on him, he was back in his crib, and sleeping like the “baby” he is. Clint wants to take the crib down. I’m not sure I’m ready for that so I’ll use the size excuse for as long as I can.

April 4, 2010 "Miracle Pill"

Two weeks ago yesterday, we took Porter to see a psychiatrist. I thought that day wouldn’t come soon enough. Difficulties were escalating. He was consistently sleeping in the hallway or bathroom. He was having meltdowns at school as frequently as every other day. We were fighting with him at home about home work. He seemed forever “grounded.” This was no way to live.

Clint, Porter and I sat down with the good doctor and related the events of our current situation as well as past examples of Porter’s anxious and compulsive tendencies. He took notes, of course, and came up with three areas of concern. First, anxiety and worry. Yep. Next, sleep. Definitely. And lastly mood, though not as much of a concern as the first two.

He recommended that we immediately start Porter on a medication for his anxiety, which would also help with sleep. Great, a twofer. We discussed our concerns over putting him on medication such as, would it change his personality? Because as you know, Porter has an exceptional personality. Nope, should be no change there. Good. We also wondered how long he’d have to be on it, the answer was: to be determined. After the doctor finished explaining about the medication and what it was intended to do, Porter shot his hand in the air, and enthusiastically said, “We’ll take it!”

And we did. We went and immediately got the prescription filled and he started it that night. By Sunday, just two nights later, he was sleeping in his own bed, which is where he’s been since then (with one exception, but I’m not going to complain). I asked him one morning how he felt and he said “Fabulous!” At school his behavior and performance made a dramatic improvement, and I even got a call from one of his teachers wondering what possibly could have happened. Win win all around.

More than anything, he seems more calm, less worried, and happier. Truly, a miracle pill. We have a follow-up appointment in about 2 weeks. I’ll keep you posted on his progress.

April 4, 2010 "WTF?"

It has been about a month since Porter had his follow-up with the neurologist. It was an interesting visit. Clint took him up to Primary Childrens. They met with a neurologist to go over the results of Porter’s recent EEG and MRI. We had never met with this particular doctor before, so all he knew of Porter was what was in his medical records and what he was seeing for the first time that day. I’m not sure that we were expecting what the doctor had to say that day, in fact I’m pretty sure we weren’t expecting it at all.

He told us that Porter’s EEG and MRI were normal. At first we thought maybe that his MRI was normal for him, as compared to previous MRIs. The doctor proceeded by explaining that Porter’s brain was perfectly healthy and normal as was the case on his previous MRI that was done 5-6 years ago. WTF? Porter’s brain is normal? The doctor then said, “I don’t think Porter has cerebral palsy.” That really caught Porter’s attention. “I think he might have dystonia.” Seriously? After all these years, doctor’s appointments and focus on cerebral palsy? Really?

Those of you who know Porter knows he has difficulties with his mouth and has since birth. The doctor said that Porter’s abnormally tight jaw was nothing that he has seen in any other cerebral palsy patient. He suggested Porter start a medication that Parkinsons patients take, one that might help relax his muscles. The neurologist was also going to consult with an ENT for further ideas on what might really might be going on and what might be done about it.

Porter and Clint met me for lunch and related the results from the appointment. Porter was confused, a little disbelieving, “Do I really not have cerebral palsy? Really?” Then he got a little angry, “Those doctors are stupid! How come they didn’t know this? I’m 10 years old and they didn’t figure it out yet?” Then, the action that hurt my heart the most, Porter set his head on the table and sobbed, quietly and sadly. His little shoulders shook and big tears dropped from his eyes. I’m sure he was feeling a mixture of emotions, but mostly uncertainty and fear.

He looked up at me and said, “What if it isn’t dystonia either? Then what?” I answered,“Then we keep searching until we figure it out.” “Mom, we’ll never give up?” “Never.”

March 4, 2010 "Those are the breaks..."

In my last post I wrote “I haven’t written for awhile because we’ve been having a lot of difficulties with Porter. I can’t write in frustration because I don’t want that to become our focus. We, as patiently as we can, wait out the challenging moments, knowing that our charismatic, inventive son is still there and is also frustrated.” That was January 25^th. February was a very frustrating month. The highlight of the month was Porter turning 10. My facebook post on his birthday said, “Porter was in my dreams, my hopes, and my heart long before he arrived ten years ago today. Thanks for letting him take up some room in each of your hearts! I’m fortunate that these special boys of mine have brought out family so much love and support.”
I’ve been waiting to write, and waiting, and waiting some more. Porter’s parent teacher conference was tonight. Two of the first things we heard:“The principal would like to meet with you after we’re done here if you have the time,” and “Porter threw a book at me today.”  If I don’t start writing again, even out of frustration, I think I will need to develop some other vice to even out this emotional rollercoaster ride. So I’m writing, through the bad, as I wait again for some good.
Porter is frustrated, angry, sleep deprived, anxious and LOVED, loved by us, and loved by so many others. The principal wanted to talk with us out of concern for Porter. All have noticed his behavior recently take a turn for the worst. We are frustrated, angry, sleep deprived, anxious and parents, Porter’s parents. We will continue to do whatever we need to do to help him. That’s the frustrating part for us, figuring out what to do. We’re working on it though, beginning with an appointment with a neurologist this Friday.
It breaks my heart to know Porter is suffering. I broke down tonight. I’m hoping for a breakthrough in the near future.

January 25, 2010 "Way to go!"

So Clint and Porter had a conversation while riding in the truck the other day which I would consider his first “sex” talk.
Porter: “You and mom made Parker.”
Clint: “Yep, we made you too.”
Porter: “I know. By making sex,” which he chokes out at the beginning of a giggling fit. When he catches his breath: “Yeah you guys made sex. Good job Dad!” Porter tries to congratulate his dad with a fist bump from the back seat.
Clint: “What does sex mean?”
Porter: “Kissing, hugging, making out. You take Mom’s hand, go up in your room and shut the door, turn off lights and make out.”Laughing hysterically all the while.
Porter: “How did you guys make Parker? I never saw you guys making sex one time.”
Clint: “Where are you learning about sex?”
Porter: “Uncle Jesse on Full House. Jesse said ‘Let’s have a baby to Becky and then he took his shirt off and turned off the light.”
Full House is Porter’s favorite show right now. He aspires to be Uncle Jesse, a cool dude. Uncle Jesse is on the same pedestal as Danny Zuko from Grease. We did not realize Porter was gaining that kind of knowledge from what we thought was an innocent 80s show.
Porter concludes the conversation with: “Sometimes I see people making out at the mall. Gross.” This from a boy who is a little ladies man, who talks about girls all the time, who would like to start dating now, who is into “older” girls, who comments on how hot he thinks particular girls are, who tries to flirt with girls when we’re out and about, who hopes to be married in the future.
Porter at KOHLS to the petite cashier: “Hey cute thing.” To which she responds, “I may look really young, but I’m much too old for you.”
Tell me, are we in for trouble? Or are we already in trouble?
I haven’t written for awhile because we’ve been having a lot of difficulties with Porter. I can’t write in frustration because I don’t want that to become our focus. We, as patiently as we can, wait out the challenging moments, knowing that our charismatic, inventive son is still there and is also frustrated. So, we wait for glimpses like the one above, and that’s when I write so as not to perpetuate any negative energy. Porter is having some tests done this upcoming week. Will we get answers? Maybe, maybe not. Either way we did make him, and we wanted and wished for him to be in our lives. We will continue to learn with and from him, and most of all we will always love HIM, for HIM. In the end that’s what matters most. 

January 2, 2010 "Fan of Food"

It was only about 3 days after Porter’s tonsillectomy. He was attempting to eat one of his favorite foods, a cheese quesadilla. After taking a bite and wincing as he swallowed, he tried another and got the same result. Though he truly wanted to eat, his throat was unforgiving and he was frustrated. He looked up at us and exclaimed, “I’m a big fan of food!”
I have often said for all the ways my boys are challenging, they are easy in many others. This is one area of ease, food and eating. I’m grateful for it too. I have heard about and witnessed the struggles parents have with their children over eating.
Some of the things we haven’t experienced: multiple meals, different foods for each family member. For the most part, our kids eat what we eat. Of course there have been exceptions, but those occasions are rare and usually involve a sit down meal at a restaurant.  Another: chasing our kids around the dinner table, or our kids using the dinner table as a pit stop. They don’t take a bite, dash off to play, come back for a bite, and off again. They sit until they’re done, then it’s on to the next activity.
Constant snacking? Not at our house. We eat at regular meal times, though sometimes there may be some cheese or yogurt in between. Actually, Porter isn’t much of a snacker. Some of his “don’t” foods are chicken nuggets, fries, chips, cookies, candy, mac ‘n cheese, ice cream, etc… On the other hand, Parker’s “do” foods are chicken nuggets, fries, chips, cookies, candy, mac ‘n cheese, ice cream, etc…. They are very opposite when it comes to “traditional” kids’ foods. (Unless Porter needs some food with his “dip” of ranch dressing). We’re not sure how this is going to play out as far as Parker is concerned. He might be tiny now, but he’s developing tastes and preferences that will follow him into adulthood and his metabolism will not be as forgiving later in life.
Our boys also differ in temperature preference. Luke warm is cold to Parker and hot to Porter, and both entirely unacceptable to both. But they share similarities in weight gain, or lack thereof. I used to dread the consultation with the nutritionist at neo natal clinics. She often made me feel like I wasn’t doing so great as a mom, that I was missing something when it came to feeding my children. But they ate, and ate well, ate healthy, still do. Unfortunately for Porter, right before his tonsillectomy he had strep, and right after the stomach flu, which constituted an all night puke and poop fest. I think he’s lost about four pounds, which is a lot when you don’t have much to lose. His pants are even baggier, his face even thinner.
But luckily, he’s a big fan of food! He’s on the mend and enjoying food once again.  

December 15, 2009 "Lucky Choices"

“ …but she no longer believed in luck, good or bad. People made choices and lived with the consequences. Through the years she had discovered that some people had certain advantages that allowed them to escape the worst consequences of their bad decisions, but she wouldn’t call that luck. If she did, she would have to wonder why good luck and bad had not been distributed more equitably, and dwelling upon that was the quickest route to bitterness.”

That’s a quote from the book I’m currently reading, Circle of Quilters. I read that page last night, and it hit a nerve. People often tell me that they admire me for the manner in which I’ve handled all life has thrown my way. That I’m an inspiration for having such an optimistic attitude in spite of the challenges I’ve faced. My response is usually to say that I don’t really see myself as being much different than others, most people just haven’t been given the opportunity to exhibit their strengths in the way I have.

But then again, though I’m not sure that I’d qualify my children and cancer as consequences of bad decisions, I would definitely agree that people live with the consequences of their choices. For me, I choose to live life as an optimist, the consequence being and enjoyment of life. I guess I could have just as easily chosen to feel like a victim, leading me instead to that “route to bitterness.”

There is one situation that sets me on that path to bitterness, or down the “Why me?” road. This time it happened on Saturday at the mall.  It has happened at the zoo, at school functions, parades, and theme parks, really anywhere that families gather. I was patiently waiting for someone to check another store when I was asked once again if I needed help. After I told the salesperson that I was already being helped, he turned his attention to a mother pushing a stroller to see if there was something she needed. She said that she was just following her son through the store. That’s when I noticed that she had a total of 6 kids, from teens to toddlers. They were a cute family, all seemingly healthy, and well behaved, though I am obviously just assuming all of this.

That’s what sets me off on the, “Six kids? Six typical, normal, healthy kids? How is that even possible?” That is just so the opposite of my reality. And honestly, for a moment I am envious, angry, sad, tired, resentful, and bitter. But only for a moment, because no matter what, dwelling in someone else’s reality isn’t going to allow me to live in and celebrate the beautiful reality that is mine.