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!

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.

July 19, 2010 "High School Reunion"

I 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!

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.

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.

November 2, 2009 "...celebrate everything"

  

This year we were members of the rock band KISS. Porter’s into KISS, mostly because his best buddy Liam is into KISS (which is also why Porter has defected from the Patriots to the Bengals).  I started with basic black, then embellished with lots of silver. Clint, always a little reluctant, helped with the masks. (I should clarify that he’s not reluctant to help, just to the idea of having to dress up.)
Halloween isn’t really one of our favorite holidays. It’s a holiday that kind of creeps up on us. All of a sudden it’s here and then we’re stressed to complete costumes. But the actual dressing up, hanging out with friends, and trick-or-treating is very fun. And it’s a reason to celebrate, right?

“Until further notice, celebrate everything…” Just last week I was given that saying on a sign made for me by my dear friend’s dear mother. Celebrating everything is what I do a lot of the time. I feel like “celebrating” the different aspects of my life, all the different situations I find myself in, all the people I associate with, and all that I learn along the way. That may sound a little cheesy, or like overkill, but I mean it.

I had a hard day last Friday, probably the first real “bad” day since chemo ended. But it wasn’t too bad, just a little on the unpleasant side compared to all the wonderful days I’ve had over the past two years. And it was actually a buildup of several situations over a few weeks added to a sleep deprived state that finally made me hit a wall. I just let some things get to me that I shouldn’t have regarding interactions with colleagues. In the midst of my pity party, someone said something to me that helped me snap out it. “I can understand how you feel bad about not having any friends,” at work. What? Wait a minute, is that what it sounds like I’m saying? What I meant was that I’m just not really enjoying some of the treatment I’m getting from some of my colleagues. And guess what, they’re not my friends, and thank goodness. Not so sure that I want mean people to be my friends. And another thing, I do have some great friends that I work with, and that’s where my focus and energy should be.
So, I quickly refocused on the friends that are in my heart, both at work and elsewhere, and I became so overcome with emotion so quickly, it really felt as though my heart would burst. I really am so incredibly fortunate to have such wonderful people in my life. And that’s something absolutely worth celebrating.

“… celebrate everything…” because you never know when the event, person, item, relationship, etc… will be gone.

October 29, 2009 "Tiny Tot"

I haven’t written much specifically about Parker yet. Porter has 6 years on him so I can’t wait to see what crazy things I’ll be writing about Parker in the years to come. I went to Parker’s first parent teacher conference today. While I was sitting with his teacher, on a tiny chair next to a tiny table, I noticed the coat hooks lining the wall labeled with each student’s name. They looked similar to the ones in the picture. I searched for Parker’s name and couldn’t find it. Then I saw it on a white, plastic hook adhered to the wall right next to the rows of coat hooks. Come to find out, he had to have a hook that was lower than the already low preschool height hooks.
Parker is tiny. Just the other day, another mom asked me, “How old? Eighteen months or 2 years?” Uh, that would actually be 3 ½ years old. He fluctuates between 24 and 26 pounds, depending on who is feeding him (Grandma) and if he’s healthy or ill. He wears 18-24 month size clothes (which I’m getting tired of looking at). His shoes are size 5. He wears a size 4 diaper that he fills up, but doesn’t fill out. The size 3s fit him better, but they get way too wet. We’ll get one more year out of his 18 month Patriot coat, yeah!
Parker’s developmental age and tiny size match. One thing that doesn’t match is his size and the amount of love he gives and receives. It seems like we’ve had a “baby” forever. He feels like a baby when you hold him. He walks and runs like a baby as he toddles around. He gibber jabbers like a baby. He’s our baby and always will be in a lot ways. His teachers told me that they have to remind each other and the assistants to treat him “older,” mostly meaning to stop carrying him around and doing things for him (giving in to him). It’s the same at home.
The average height for a male with down syndrome is 5’ ½ “. That’s the AVERAGE. I’m 5’4” and Clint is 6’ so I’m really not sure where Parker will end up. But it doesn’t matter. He’ll get to where he needs to and be loved all the while, at every age, at any size.

October 12, 2009 "Halloween Costumes"

Halloween: a favorite holiday for some, sacrilege for others, parties, candy, and costumes. My mom doesn’t believe in it. The whole idea actually offends her (which in large part has to do with her religion). My in-laws celebrate it with a whole family party, a tradition started eight or so years ago. It’s a fun holiday, not my favorite(Thanksgiving is), but fun none the less (even though Porter has little interest in candy). 

We started family themed costumes when Porter was 2. Here we are, Porter the Patriots football player (he has since defected to the Bengals), Clint the crazed fan (which he truly is) and me the cheerleader (which I never was). The next year we went with Willy Wonka (Clint), Violet Beauregard (me), and our little Oompa Loompa Porter.

The year before Parker was born it was a law theme. Porter was a motorcycle cop, I was judge, and Clint was the criminal.

The next year Porter was six and had some ideas of his own, though he did before as well. I was just able to sway him to what I wanted. He was into Power Rangers that year, and his favorite color was and still is red. So I incorporated the family theme around him. Parker, a mere 5 months old, became a hotdog. Clint was a chef, I was mustard, and Porter doubled as a red Power Ranger AND ketchup.

The year after that we were going to do a Popeye theme with Clint as Bluto, me as Olive Oyl and Parker as Sweet Pea. That was a crazy month and only Porter’s costume was ready for Halloween. And, just to emphasize how crazy the month was that year, we don’t even have a picture of Porter in his awesome costume.

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!

September 12, 2009 "Too Sexy?"

There’s a fashion deputy that lives at my house. His name is Porter. There’s little chance I’ll ever leave the house looking like a hussy under his watch. Porter had a meltdown at the shoe store last week, but let’s start at the beginning.
Last summer, we were invited to an afternoon pool party at the neighbors. It had been over a year since my body had had a good dose of sunshine (chemo, surgeries, etc….). I wasn’t going to get in the pool (still going through reconstruction), but I definitely wanted some sun. I came downstairs wearing a tank top, sat down for breakfast, and was almost immediately accosted. Porter reached over and grabbed the middle of the tank top, pulled it up, and informed me, in his own words, that my boobs were showing and that was not acceptable for a mom, and more specifically, for his mom. I explained that since we were going to a pool party, that a tank top was indeed acceptable attire, and that he’d just have to live with it. Little did I know…
Porter is my shopping partner. We shop pretty much everywhere together, though I think those times are becoming numbered as he is growing up and growing bored of the whole process. Shortly after the pool party, I took Porter to a store with me to find more tank tops for the rest of the summer. I looked around, put some in the carts to try on, then approached a halter type top, a sleeveless one that tied at the neck. As I reached for it, Porter blocked my arm and says, “No way, not my mom.” So I asked him what was wrong with the top to which he replied, “It’s too sexy.”We’ve had other incidents since then with other outfits and even with my hair. I have been told that I can’t wear my hair a certain way because I’m a mom, not a kid. And he’s never liked my hair pulled back. The latest was over a pair of boots, the ones he had a melt down over. I looked all last year for a pair of knee high boots I could wear with capris and skirts. So, of course, I find a pair when I’m not meaning to. Before I even try them on, Porter tells me that I’m not going to get them. I try them on, and he’s getting anxious. Then we go through the “Not my mom,” rants and he tells me it’s because they are too sexy and his mom doesn’t wear sexy clothes. I try to calm him down by showing him boots with stiletto heels and other shoes that are “sexy,” but he’s not having it. In fact, at one point he said to me, “Who are you?”

Porter modeling the "too sexy" boots.

Porter went into full meltdown mode when I told him that I was indeed going to purchase these boots. The quivering pouty lip of his babyhood was front and center. Big crocodile tears were rolling down his face. I elicited the help of the sales lady to give “her opinion” of how “professional” the boots looked. Porter had to go to the restroom to try to get himself together. It didn’t quite work. I finally told him that if we took them home and Dad said they were too sexy I would return them. Of course I knew Clint wouldn’t say that, because as you can see, they are not too sexy. I wonder what brought all this awareness on? how long it will last? and if Halloween will be the only time I’m allowed to leave the house looking like a hussy?

August 30, 2009 "Back to School"

“I gotta go back, back, back to school again… Whoa whoa, I gotta go….Back to School….AGAIN!” Porter loves Grease, especially Danny Zuko, so I thought that would be a fitting intro for this post.  Just like many others, we all headed back to school this week. Parker started preschool and Porter started fouth grade. I went back to work the week before, the kids came back this week. I also started school, again. I’m taking a couple of classes towards my admin license. I’m just a school junkie!

So, our tiny Parker started school. Hard to believe he’s 3. He’s still not there in clothes size, but he has grown, a little. Clint has been very worried about Parker going to school. He is being transported by bus from daycare, two mornings a week. Clint has had very disturbing thoughts of Parker getting lost, left on the bus, wandering off without notice, etc…. “He’s just so small…” Clint made a plan to observe the drop off process and after dropping Porter off, went straight over to Parker’s school. I called him later that morning to see how it went. Clint said, “I think I made it worse,” and I replied, “Made what worse?” Then Clint tells me how Parker started crying when he saw Clint. “WHAT? He saw you?” Ay yi yi! “You didn’t just watch from the truck?” “No, I got out and he saw me,” then Clint went on to explain the exiting process, the adult to kid ratio, and how Parker got “carried” off the bus and the other kiddos got help “walking” off. Needless to say, Clint seems to feel okay with the process now. Phew!

Apparently, there is a party at Porter’s school each morning before the bell. He walked to school one morning with his best buddy, which I wasn’t aware of until the next morning (Clint gets him ready for school and I had a couple late nights away from home this week). He was begging to call his buddy (at 7 a.m.) to see if he wanted to walk again. I told him he had to wait a little while; it was just too early to be calling people. Then he told me about how they walked, got to school early, and “Mom, it’s like a party! Kids are playing football and basketball. We’re talking and hanging out!” Wow! I’m not sure that I’ve ever heard school described in quite that way, but I’m definitely excited that he’s still excited about school. It amazes me, that in spite of his challenges, he enjoys school so much, and it’s not just the social aspect, he loves to learn, even if he doesn’t do it in quite the same way as other kids.

As for me, I’m not a classroom teacher this year. I’m the data specialist for our school, a new position and one I’ll be inventing and reinventing along the way. I’m excited to work towards improving instruction for our students, which means working on equity and the achievement gap. My admin classes and job go together nicely, and it doesn’t hurt that I should have a more flexible schedule. Though I do miss having students, I still get to see the ones I had last year, and hope to be getting to know the incoming seventh graders too!