Did you date my mom?

July 29th, 2010

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 onforrest-61 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,forrest-7 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.” forrestIf 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.

High School Reunion

July 19th, 2010

me-5I just had a great time catching up with old friends. Some I’ve known since elementary school, others I met in junior high. There were those I didn’t get to know until my senior year in high school, and a few I got to know better at my ten year high school reunion. There was even someone I didn’t know I went to school with that I met over the weekend. I’m sure it’s not hard to figure out that I was at my high school reunion, the 20 year to be exact. A lot of disbelief surrounds the event. The most obvious being that we cannot seriously be 20 years older already. But here we find ourselves, 20 years later, a group of people once bound together by our birthdates, addresses and high school continuing to connect with one another in old and new ways. I saw many former classmates I was hoping to see, but there were many more I would have also loved to catch up with. What a fantastic group of people we shared our childhood with. What varied and fascinating lives we have led over the past 20 years. What amazing perspectives we have to offer one another. How easily we picked up where we left off to enjoy our friendships once again. So does that really mean that the more things change the more they stay the same?
Change is an interesting thing. There were those with noticeable physical changes and those with seemingly none (Nikki who I’m sure could enroll in high school today and nobody would bat an eye, as well as our own Dick Clark, Chris Wright). Physical changes are sometimes hard to take, whether it is a more soft or doughy body, weight gain, scars from injuries or surgeries, wrinkles around the eyes, lack of hair, hair color, the effects of disease, the list could go on and on. There are also changes that are less obvious but impact our lives none the less: occupational changes; living arrangements and locations; births and untimely deaths of spouses, children, even parents; marriages, divorces, remarriages; and again, another list that could go on and on as well. Things are changing all the time, yet many are resistant to or afraid of it. Well, we’ve definitely changed since high school, and we have all definitely survived it.
I made a decision not to long ago to do more than accept change but to embrace it. For me it’s really the only thing that I can count on which sounds a little like an oxymoron, counting on something is in a continual state of flux. In a way I guess that means that I also don’t count on anything, at least not to the extent that my life will be “ruined” if a situation doesn’t turn out how I thought it would. There is a lot in my life I didn’t expect to happen to me like having children with disabilities or getting cancer at 34 years old. I saw many classmates who also didn’t expect things to happen to them like divorce, disease, unemployment, and loss of loved ones. But more than the challenges, I saw the resilience. It fed my soul to know I was not alone in experiencing some of the more difficult things life has to dish out, but also that I am not alone in choosing to learn from and enrich my life with those experiences. I felt the positive energy of people all around, living the life unfolding in front of them, making the best of some not so great situations. Thank you all for your incredible examples!

Na na, na na (Knock knock…)

April 27th, 2010

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!

100_3547Parker 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.

100_3544Tonight 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.

Miracle Pill

April 4th, 2010

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.

WTF?

April 4th, 2010

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 dytonia either? Then what?” I answered,“Then we keep searching until we figure it out.” “Mom, we’ll never give up?” “Never.”

Those are the breaks…

March 4th, 2010

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 25th. 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.

Way to go!

January 25th, 2010

way-to-goSo 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.

Fan of Food

January 2nd, 2010

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.  

Lucky Choices…

December 15th, 2009

“ …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.

Goodnight Moon

December 5th, 2009

100_33661“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.