… celebrate everything.

November 2nd, 2009

 

 
 
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.

Tiny Tot

October 23rd, 2009

0768jcI 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.

Halloween Costumes

October 12th, 2009

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). 2002

The next year we went with Willy Wonka (Clint), Violet Beauregard (me), and our little Oompa Loompa Porter. blackfoot-21blackfoot-5

100_0408100_03711The 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.100_1333100_1332100_1363

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.

card-both1Last year, Porter and Parker were bikers with bandanas, leather, and tattoos. This year? It hasn’t been decided. We have a few ideas. Porter’s very much into Danny Zuko, so we could do a Grease theme. He’s also into KISS and Parker has a tongue that rivals Gene Simmons’ tongue. What will it be? You’ll have to wait and see.

The Love Master

October 8th, 2009

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!

Too Sexy?

September 12th, 2009
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.”
100_3257We’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 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?

Back to School

August 30th, 2009

“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!

100_3245So, 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!

100_3247Apparently, 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.

100_32351As 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!

Vices

August 12th, 2009

Ok, I might as well come clean and follow up the smoking story with one about a bar. You know how most kids play house, or school, sometimes even doctor? Not mine. Porter prefers to play bar. This past spring, during a sleep over, Porter and his BFF created a “bar” in our basement playroom. There was a sign on the door announcing the name and hours of operation. There was a big screen tv with a football game on it (homemade on poster paper and taped to the window). They had a counter and cash register. And they were serving root beer. When Clint arrived home, I instructed him to head downstairs to experience a “proud” parenting moment. Porter hasn’t played bar since, but he’s recently showed interest in playing poker.

Yep, one bad habit after another. What kind of parents are we? Should our 9 year old be interested in smoking, bars, and poker? He’s not obsessed or anything, he only played bar that one time. His interest in poker comes and goes, and to his credit, he is trying to quit smoking. Maybe we can work all of these vices out of his system now so they won’t be issues later in life? Or does Porter have an addictive personality (he did ask the hygienist where he could buy laughing gas)? Who knows?

For now I’ll chalk it up to childhood curiosity, which Porter has an over abundance of. In fact, the other day he asked me how babies were made. This post wouldn’t be complete if sex wasn’t mentioned, right? I asked why he was asking, he said he just wanted to know. I asked again why, if it was something he saw on television or did he talk to someone about it? He said he just wanted to know. So I asked him how he thought babies were made. His answer: “You pray to God and he gives you a baby. That’s how you got me.” Good answer! From his explanation I knew that he wasn’t quite ready for “the talk.” And what he said was actually not far from the truth.

Cold Turkey

August 8th, 2009

100_6184“Mom, I quit smoking,” Porter announced to me during breakfast one morning. My response was something like, “Well, that’s good, because smoking isn’t good for you.” As a point of clarification, this was over breakfast, a time when my head is usually buried in the daily paper while I mechanically attend to my children’s needs (i.e. passing them a napkin, pouring a drink, etc…). And besides that, I wasn’t really expecting a statement of that caliber to come from Porter’s innocent mouth.
“Really mom, I quit smoking,” he insisted, obviously not happy with my less than stellar first reaction. “What did you say? You quit SMOKING? You don’t smoke. How do you quit doing something you don’t even do?” “But I do Mom, I have been smoking,” he insisted.
Long story short, he had indeed been “smoking.” Thank goodness it wasn’t real cigarettes, just the straw variety. We have a Costco size bag of drinking straws that I bought him for the perfectly benign purpose of creating art projects. Little did I know Porter had used his imagination in an unexpected way and turned those very straws into cancer sticks.
He demonstrated the process for me, and the whole while I was thinking, ‘I hope he didn’t “smoke” in front of other kids or worse, their parents.” Since I hadn’t heard anything from the neighbors, and we’re a tight bunch, I assumed that he was discrete in his habit, a habit that he lovingly learned from his Uncle Andrew, who was discrete around my kids, at least at first.
When Uncle Andrew first moved here a few months ago, he was careful about smoking away from and out of sight of my kids. This wasn’t something we asked him to do, in fact I didn’t really know he was smoking at all, until Porter told me. It was inevitable that Mr. Curiosity would find out eventually, more likely sooner than later, it’s in his nature. Porter ADORES his Uncle Andrew, so you’d expect him to want to be like his uncle. My dad was also a smoker, until his heart attack 4 years ago. Porter is aware of this also, so I used it to “celebrate” his smoking cessation. “I’m glad you quit Porter, because remember what smoking did to Grandpa? It hurt his heart.

I caught him a couple days later, out on the deck with a straw, which he quickly hid behind his back when he saw me. Do thy make a patch for that? 

Unhinged…

August 6th, 2009

I think you more fully understand how connected you are to your children when you begin to become disconnected, when they grow in their freedom and you find yourself getting some of yours back too. I’ve experienced a little of that this week. The only times I have ever left my children in the car when running into a store has been this summer. Porter’s 9 and Parker’s 3, and I’ve probably left them half-a-dozen times, and only for a quick in and out. That small growth in Porter’s freedom also gave me a bit more freedom. It unhinged me, from them, literally. Parker was not on my hip, Porter not off obeying his own curiosity while in the same vicinity as me. It has made it a little easier to grab a prescription, pay a bill, drop off or pick up items.

Parker got a taste of potty training, via grandma. She finally decided that though he is 3, he is also developmentally delayed and not quite ready to go it on his own. This would have been another measure of freedom. We wouldn’t be changing his butt everytime needed, though certainly would continue to monitor his bowel and bladder movements. Though it would be nice to gain a little more financial freedom from the cost of diapers, I’m okay with letting it slide a little longer. Parker has also been able to be a little more free in the house since he can manage stairs without any difficulty. He regularly travels from all the way in the basement to his room or ours and everywhere in between.

For Porter, this summer has given him another sense of freedom, one that he considers very much in his favor. This is the first summer that I allow him to “go play” without my constant hovering. When we first moved into the neighborhood a few years ago, Porter was 6 and I was obvious in my supervision. He wasn’t out if one of us wasn’t right there with him. But since that’s how the whole neighborhood functioned, it wasn’t a big deal. The adults would visit while the kids played. The next year, I tried to ease up a bit, so I would work on the yard while keeping an eye out. Porter wasn’t easily fooled and would try to reassure me that he was fine and I didn’t have to be out there. Last year the kids would play with maybe just one parent out keeping a casual eye on the group as they traveled around the neighborhood together.
This year, we’ve all eased up, probably because they’re all a little more grown up and we’ve made our expectations clear over the past few years, and a surprise “visit” here and there has kept them in check. We parents keep very close communication and are very proud of the fact that our kids will not likely get away with anything, not with more than 18 pairs of eyes around the neighborhood.

I have never really felt that being a parent has taken freedoms away from me, it’s just part of being a parent and I never considered it any other way. And getting those “freedoms” back make me realize it’s because my children are gaining freedoms and independence. Is that a win/win? Or a lose/win or win/lose? I’m sure it’s for the best, we want our kids to be independent, but I’m not sure I want to be unhinged.

Moments

August 3rd, 2009

22239581“Live in the moment.” This is much easier said than done. It’s definitely become much easier for me to do because of all that’s happened in my life, especially the threat of life ending. So I did that, especially well this past week while I was in San Diego for a business/pleasure trip. I worked hard and played equally hard. While in class, I was focused on the task(s) at hand. When out and about, I enjoyed whatever it was we happened to be doing. I didn’t worry too much about before or later, tomorrow or next, what ifs or might have beens. I just lived in the now, the moment as it was happening. This is probably why “Feel out of sorts; not sure where to start?” was my facebook post upon my return.

I do feel a little out of sorts. I finished a big project before I left on my trip. I finally got our master bedroom totally and completely unpacked (after having moved in 3 years ago). Laundry was caught up before I packed and my mom and Clint did other various cleaning and home projects in my absence. While away, I did not watch tv, not once, didn’t even turn it on. I also didn’t read any newspapers, which I do on a daily basis while home. My life consisted of learning about AVID (Advancement Via Individual Determination)and vacationing in San Diego.

I managed to talk to my family each day I was gone. Porter had a meltdown a couple of days before I was going to leave, afraid that I would somehow “die” while away, or on the way, or when on the way back. He ended up going with Clint to take me to the airport and was fine about it. But something happened with Porter that made me feel that I missed a big moment here. He went from a size 3 shoe to a size 5! How is this possible in a week’s time! How could my “big boy baby” grow up like that! Whoa! Slow down! Truth be told, his 3s were probably a little too small, and the 5s a bit too big, but still. Parker also looked much more grown up, due no doubt to a week on grandma’s feeding schedule.

It took a full day for my body to recover, sleeping most of the day after my return. I call this the “vacation hangover.” My mind is still recovering, which is the “not sure where to start,” comes in. I’ve been easing back into normalcy. I’m caught up on news, updated my book journal, and have been playing with Parker and reading. Truth is, this is not normalcy either. Normal will be when I return to work after 2 more weeks of summer vacation. I don’t want to think about it, so I’m going back to living in the moment, starting with this moment.