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.

Two Weeks Notice!

Race for the Cure is TWO WEEKS from today! I'm very excited to be participating as a runner, team member and fundraiser! My team is in the Top 10 for fundraising! BUT we haven't reached our goal, YET! Please, please, please contribute or join our team ASAP!
If you register by MAY 6 then your bib and t-shirt are mailed to you! Woohoo! You can actually contribute money up until May 31 for it to count as Race for the Cure funds, but I will stop bugging people about it after the race.
Once again, here is the link to my team page: http://slc.info-komen.org/site/TR/RacefortheCure/SLC_SaltLakeCityAffiliate?team_id=204249&pg=team&fr_id=2479

You can donate to the team in general, or to any of the individual teammates listed. Porter and Parker each have a goal of $5.
The Race for the Cure will be my FIFTH race since turning forty, and it celebrates 5 years of being a survivor! We are also dedicating this race to my dear friend Lee as she starts her fight against cancer!

On a slightly different note, I did my third race today, Color Me Rad. It was a family and friends effort and way too much fun! Parker was able to volunteer through the Utah Down Syndrome Foundation, and Dad and Porter were his volunteer buddies. Fun was had by all!

Lake Powell Birthday

     

How do I even begin to describe the most perfect 40th birthday! I can't, but you can see it in pictures. Surrounded by extraordinary views, wrapped in the sun's warmth, rocked by the waters of Lake Powell; experiencing all that with some of the best people on the planet! Beats the hospital bed I was in 5 years ago! So grateful for my life and all that is part of it!

Learn Something New Everyday!

I actually don't see how you couldn't do this. Instead of making it a point to learn something new everyday, I think you'd have to make a point of stopping yourself from learning something new. I'm not only considering academics or book learning, but also career knowledge (which for me happens to be a lot of academics and book learning), social, political and pop culture, personal life lessons, intended and unintended, and the list could go on and on.
Here are three new things I learned yesterday:

At work, with the help of a colleague, I learned more about My Access. I learned how to import students, set up groups and assign a prompt. The day before, with the help of another colleague, I learned how to use the student results to know what types of lessons/teaching I should focus on. End result: I will learn more about what my students know and also learn what to do to help them learn more! Win win!

At a social function with friends, I learned that kids only have to be "shielded" from seeing alcohol depending on the type of liquor license you have. I'm surprised that parents aren't given some sort of partition to place around the alcoholic beverages on their table to keep their children "unaware." Speaking of children and alcohol, here's a previous post about Porter playing "bar." I already knew that Utah's liquor laws were a little quirky, but I learned last night that they are actually totally absurd. For example, you can't "travel" with your beverage, meaning that if you are at one table and move to another with your drink, then set it down, you've broken the law. And that it takes two people to order a pitcher of beer, but one person can order an entire bottle of wine AND a shot of tequila and be served both at the same time because that is considered only two drinks.

My awesome friend Vickie also tried to teach us the proper way to take a great picture, as in pose for a picture. Something like sit up straight, one shoulder down, chin towards that shoulder, head tilted to opposite shoulder, chest out, and something about creating an S? Still learning.

One last thing I learned from Instagram is that KPop is all the rage, or will be all the rage. Basically it's VERY popular Korean pop music by Korean girl and boy bands. Feel free to check it out!

PHEW! I wonder what new things I'll learn today? Tomorrow? Next week? Next year?

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 "Back to School"

We’re all back in school to varying degrees. I’ve been back to work going on seven weeks now. The highlight of the school year so far, going to my first Quincenera for a former student. This year I’m back in the classroom full time teaching health, and love being with the puberty ridden adolescents I teach. Other than that I don’t want to make an exhausting and challenging situation worse so I won’t do a lot of complaining, other than to say it really bites that it’s the norm for me to leave the house before anyone’s up and get home after the boys are in bed. Though it’s once or twice a week, it is happening with more frequency than any other time in my career, and I really don’t care for it. I have always usually been able to do either the morning routine and get the kids off to school, or do the after school pick up routine. Unfortunately I am able to do neither this year because of a grant our school received. Fortunately our nanny is back from last year and my niece who lives with us is also able to fill in. I just can’t imagine what I would do without my village. (Both the nanny and the niece are 18 years old yet constantly mistaken for Parker’s mother. I am old enough to be the nanny and niece’s mom!)

This is Porter’s fifth week at school. He’s in fifth grade and I’m trying to stay focused on the here and now because imagining him in junior high two years from now is enough to make me ask for the doctor to up my meds. Porter is definitely a character, very much his own person. He’s still unbelievably social and curious. He still loves to play outside and would probably live outside if we let him. And he’s more technologically advanced than I am. Since he doesn’t have a cell phone, he figured out how to text our phones using his email account. One night I tried it, and after a half hour of not being able to figure it out (we all know how precious time is) I called for Porter to show me how to do it. I still can’t figure out how he did it out in the first place. I think technology will be his saving grace.

For Parker it’s just his third week of school. He attends a Montessori preschool 3 mornings a week and a public school preschool 4 afternoons a week. He’s still small, but growing. He thinks he’s four going on forty. He will often decide to leave the house, through the front door, with car keys in hand (I still haven’t found mine from yesterday). He will attempt to get into a vehicle. He manages to do this under the supervision of 1-3 adults, depending on the day and time. This either says something about our supervisory skills (each one thinks he’s with someone else) or it says something about Parker’s determination and stealth. I just hope he’s not trying to pull these stunts at school.

As a teacher it’s quite amazing to think that parents give their most precious possessions to us for the day. As a parent it can be a very scary thing to do, especially when communication is an issue as it is with my boys. I’m just thankful that their teachers and the staff members at their schools have taken the time to get to know them. Though I do worry about their academic progress, more than anything I want to know my children are loved and cared for while at school.

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 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 5, 2009 "Goodnight Moon"

“In the great green room

There was a telephone

And a red balloon

And a picture of –

The cow jumping over the moon.”

Those words are from the beloved children’s book Goodnight Moon by Margaret Wise Brown. Throughout history and across cultures the moon has been an object of fascination and curiosity. This impressive object has also been viewed by some with a little trepidation and fear.  I remember as a child when my dad would remark whenever he saw a “trolling” moon. It was a crescent moon with a single star trailing behind. The star was a bobber, the moon a fisherman. The moon is at the center of one of Korea’s biggest holidays. My mom would celebrate the large harvest moon of fall with food and friends. Unfortunately for us, the moon has become an object that creates a fair amount of angst at our house.

It has been a challenging month and half or so. It has been awhile since I last wrote, I didn’t want to sound hopeless while in the midst of the turmoil. It seems that October, and now going into November, has been our most difficult month year after year. Things are now returning to normal, namely Porter has slept in his bed, all night, since last Saturday evening. Previous to that, it was a good 3 weeks of him sleeping in the basement on a couch. When he wasn’t sleeping he was wandering around the house, or watching tv, or eating, or drinking…

How did we get to that point? Good question. I know specifically that this time, we gave up. Before that 3 weeks of Porter sleeping downstairs, he was trying to sleep anywhere but his room. We’d wake up and he’d be on the floor beside our bed, or in the recliner, or even on the floor in the bathroom. Often, he would end up in these places after waking up in the middle of the night, then waking us up in the middle of the night, and “fighting” us about going back to his bed. As many of you know, parenting is exhausting enough, so we gave in. “Sleep where you want,” we’d say, mostly so that we could get a decent night of rest ourselves.

But sound sleeping isn’t so easy when you’re worried about your child’s physical and mental well being. Because prior to all of the above, going back to when we moved into this house over 3 years ago, Porter began to develop an obsession with the moon. He has anxiety about it and exhibits obsessive and compulsive behaviors because of it. A typical day for Porter would be mentioning and talking about the moon from the moment he woke up until bedtime and all in between. Before dusk he would check out the windows, numerous times, to see if he could spot the moon in the sky. Then while in bed, he would get up and look out his blinds, easily more than a dozen times.

This is a tough situation. There are no easy answers, at least not thus far. We have consulted with psychiatrists (he’s a little young to go that route and we really don’t want him on meds), and he’s met with a naturopathic pediatrician (who has pointed us in to a possible, yet difficult to treat, disorder). Then of course there’s the wondering how much of it is within the realm of developmentally normal, and how much can be attributed to his disability. And finally, questioning our parenting over the years, going back and considering what we did or didn’t do to encourage his challenging bedtime behaviors, though the challenging behaviors are definitely not just limited to bedtime.

There’s so much more I could say, so much to sort out, and though it’s been complicated, even tough at times, life continues to also be wonderful. I’ve always said that for all the ways my boys are challenging, they are easy in so many others. I’m thankful for that and for them.

October 8, 2009 "The Love Master"

Tonight during class I sent off a text to the sitter to see how things are going with Porter. She texts back letting me know that Porter has been sad because of Rachael. I ask for a little more info. It took a couple of texts and a conversation with Porter to piece it all together, but I finally got it figured out.

Rachael’s grandparents live a few houses away. She visits them often and plays with all the kids in the neighborhood. She is a VERY nice, thoughtful, and cute little girl. Porter has known her for 3 years, but this summer he began to develop a “romantic” interest in her. He talks about her often and a couple of weeks ago told me he wanted to ask her to be his girlfriend. I told him two things: he’s too young to have a girlfriend and she was too old for him anyway. Rachael is twelve and Porter is nine. Porter countered with, “How old are you?” I tell him, and then, “And how old is Dad?” I answer that too. “See, Dad’s older than you are.” Yes, but a three year difference is a lot less at our age than it is at his.

Today he went over to Rachael’s grandparent’s house and asked for her phone number, which they gave to him. He then used his sitter’s phone to call her. He told her he thought she was beautiful, nice, and that he loved her. Then he asked Rachel to be his girlfriend. Porter told us that she turned him down because he was only nine. Which is exactly what we emphasize when we talk to him about this whole situation, “You are only nine…. There will be plenty of time for girls and dating when you get older…. You are too young to have a girlfriend….” He said it would be nice to have someone to hold and cuddle with, and of course we agreed, though again emphasizing that there will be plenty of that for him in the future.

Clint told Porter how proud he was that he showed such courage to call a girl and tell her how he felt, even if it didn’t turn out the way he wanted. We talked to him about heartache and that he would most likely experience a lot more of it. And that though now wasn’t the time for this romance to happen, who knows what’s in store for the future. “But I’m the love master,” a self-appointed title.

After a little more discussion, we just laid it out for him and told him, bottom line, he would not be dating anyone at nine years old. It just wasn’t going to happen. Then Clint goes on to explain the parameters under which it would happen, “You’ll be sixteen, or close to it. It will probably be to a school type function.” Whoa, whoa, whoa. We don’t need to discuss this now, do we? And after Porter’s next comment, I’m pretty sure he wasn’t listening to Clint at all anyway. He says, “I want to make out.” Excuse me? And where did you get that from? Thank you Uncle Jesse from Full House, Porter’s new favorite show and second favorite “cool guy.” (His first favorite cool guy is Danny Zuko.)

I am so proud of Porter, of course right? I’m his mom. But it’s more than that, I’m amazed by him. Nothing stands in his way, not his disability, not his speech difficulties, not his age, nothing. I worry about him, probably as much as any parent worries about their child, but then he does something as brave and bold as this and I know, I just know that he’s not only going to be just fine, but that he is just fine now, and in fact so much more than that, he’s AMAZING!