Parenting is hard.

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

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

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

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

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

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

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

Two Weeks Notice!

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

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

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

Another "R" Word

Here's another "R" word I don't particularly care to hear, RETARDED. Unfortunately it's a word I hear daily and often multiple times in a day. Mind you, I do work with teenagers, but they are not the only offenders.
This isn't a word I came to dislike as a result of having Parker, and I don't even doubt that I have also used this word many times in the past.
Pre-Parker, I would gently admonish my students by telling them that "retarded" people, people who could not help being born with a mental disability or people who were impacted through an accident, don't really have much of a choice about their mental abilities. What they really meant was "stupid" or "dumb." I know, I know, not much better and still name calling, but stupid can be attributed to any person or group while retarded conjures up images of a specific group of people who have intellectual and physical disabilities.
Post-Parker, I still gently admonish and then throw in that my own son has an intellectual disability and that I personally take offense to the use of that word. Most often I get a wide-eyed look of shock followed by an apology which often times included something like, "Well, I didn't mean him."
That's why I love this little PSA from Lauren Potter who plays Becky on GLEE. How many other words do people use with the caveat of "I didn't mean 'him,' or 'her,' or 'them.'" There have been occasions during my life in which people have disparaged Asians during their conversations with me. When I point this out, they say, "I didn't mean you." Is that because I'm only half? Or because they just see me as American? Then who did they mean? My mother?
Name calling with words that are used as labels for specific groups of people is hurtful, insensitive, and off-putting. I would include "gay" in this category as well as "girl." Using "gay" as an interchangeable adjective for "stupid" is, well, stupid. They are not interchangeable and insinuate that being gay is a bad thing. I also object to the insinuation that being a girl is a bad thing with comments such as, "Don't scream like a girl," "You're acting like a girl," "You throw like a girl."
So there you have it, my Sunday Soapbox.

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.

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.

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.  

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.

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!

August 5, 2009 "Unhinged"

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.

July 9, 2009 "Picture Perfect"

Family Reunion / Henry's Lake, Island Park

Inconvenient location, forms to fill out, long lines, terrible service; any guesses? I’m headed to the DMV today to replace my stolen license, a license that has been missing since May 22. That should give some indication of how eager I am to do this. In fact, I brought my passport from when I was 2 (had my birth date on it) and my University ID to the last girls night we had so that I could get into a bar. Talk about inconvenient!  So this morning I will be preparing myself for my “photo,” one that will last into the next decade, if not lost or stolen before then.

I’ve become a bit of a stranger to pictures, especially if you consider my history. My high school years were spent in a darkroom, mixing chemicals, loading film, and developing pictures as a photographer for the school paper. I also spent time at athletic games and other school functions capturing moments of high school high jinks. Then as a teacher, I was the yearbook advisor at my middle school for 6 years. For many years of my life a camera was pretty much just an extension of my arm.
In the first year of Porter’s life, I went through at least 50 rolls of film. Clint would often joke that we needed to add another line item to our budget for film purchase and developing alone. That wasn’t far from the truth especially if you figure in all the portraits we had taken (3 months, 6 months, 9 months, etc…) In fact, I documented each day of the first 20 days of his life, the entire time he spent at Primary’s in the NICU. That was the first album I did for him and I filled several more after that, diligently “scrapbooking” my way through the next 5 years of his life.
I would always have a camera at different gatherings of friends and family, snapping away to create those perfect memories for future enjoyment. What I eventually came to realize was that my need to create memories was interfering with the actual moment I was supposed to be enjoying.

Fast forward to now. I haven’t done a scrapbook for Parker, not one. I had Parker’s 1 year pictures taken on his birthday, which happened to be the day my wallet was stolen, and I have yet to go in and place my order (also on my list for today). I now often hear “I’m surprised Kellie doesn’t have her camera. She always has a camera.” I have once again become the yearbook advisor, but this time around I forget to bring my camera more than half the time and have to go back to my room to grab it, hoping that I remembered to charge the batteries.
I know when it was that things changed, it started after Parker was born and continued as I went through chemo, surgeries, and recovery for breast cancer. I did document Parker’s early life, he too spent time in the Primary’s NICU. But I did not like the fact that we were having a repeat performance there. To be honest, I was having a difficult time dealing with the fact that Parker had Down Syndrome. I continued to take pictures of his development, skipped the 3 month portraits, but got the 6 and 9 month ones. So I have pictures of Parker’s first year, but none are in an album or scrapbook of any sort.

Unfortunately, the end of Parker’s first year corresponded with my breast cancer diagnosis and the beginning of my treatments. By his first birthday I was bald. There are very few pictures, comparatively speaking, of our family during 2007. And since then, I have found that I just want to be in the moment and taking pictures seems to interfere with that. Looking through a lens seems artificial to me now, with all the posing and posturing. I often feel like taking a picture stops the momentum of the experience that is unfolding in front of me. I want to see things as they are. I know there is a compromise and I’m searching for it. Photography was a love of mine, not that I hate it now, I just think of it differently. The challenge is being able to create what I really do see in the moments that I see them and for the pictures I take to reflect that. The picture above illustrates what I’m attempting to explain. It is one of the few pictures I took during 2007.

July 4, 2009 "It's Complicated Part Dul*"

As usual, I thought of more to say related to the “It’s complicated….” post. For starters, how many of you give much thought to the boxes you check on numerous applications that indicate race? I’ve always had to think about it. It’s never been just a quick X, and on I go. Over 20 years ago is when I first started filling out applications, first for jobs, then college, then credit cards and so on. I always felt like checking only Caucasian would be a denial of my mother and checking only Pacific Islander/Asian would be denial of my father. I also always wondered why Pacific Islander and Asian were put together, though lately I have seen them as separate choices.
I couldn’t do it, I couldn’t check only one box. So I would either put an X in two boxes, or I would actually write ½ in each box. Sometimes I would check Other, and give no further explanation. Sometimes I would write “bi-racial” for Other and leave it at that. The more applications I filled out, the more frustrated I got with the whole process. I know that most of the time it’s optional, but I still felt the need to enter my info, more to show them that we all don’t fit in a neat little box than anything.
Over the years, the boxes have changed. Some of the classifications have changed to make them more politically correct. I’ve even seen bi-racial, and sometimes the directions will say check all that apply. America is a nation of variety. My paternal grandparents, born in the United States, were full Swedes. You’d never know that by looking at me, but they are.

A friend reminded me of a term used to describe me when I was young, “half and half.” It wasn’t meant to hurt or insult me, and I didn’t take offense to it. In fact, I think my friend who is half Japanese and half Caucasian came up with the term. And though I know I’m part Asian, I still feel a little surprised when someone puts a lot of emphasis on it or labels me in that way. I feel American more than anything. I was and still am influenced by my mother’s culture, but I grew up here in the States.

Here’s another interesting thing about my heritage. When Parker was born, and there were quiet whispers in the delivery room, we suspected that he probably had Down Syndrome. We already knew it was a possibility, and the reactions of the OR staff pretty much confirmed it. Even so, I remember visiting with the pediatrician later that day. He was going over some of the characteristics of Down Syndrome that he saw in Parker, all the while comparing them to Asian features. He has almond shaped eyes, as do Asians. He has small features, as do Asians. He had a small nose with a flat bridge, as do Asians. The consensus was that he most likely had Down Syndrome, though having Asian ancestry made it just a little more complicated to confirm. We waited 3 weeks for that confirmation.

My sister has a blond haired blue eyed daughter. If I hadn’t been there for her delivery, I would probably still be wondering about that one. You’re probably thinking, “Oh, it must be the Swedish grandparents.” All I can say for now is, “Nope,” and that maybe there will be an explanation in a future post.

Still happy to be an American, and a representation of many cultures.

*Dul is the Korean word for two. Just wanted to clarify that my mom is from South Korea.

June 26, 2009 "Hope and Heartache"

Hope and heartache or heartache and hope. It’s the age old question of the chicken and the egg. Which comes first? Does heartache follow failed hope? Or does hope follow painful heartache? Probably a little of both.

For me, I’ve had both for better or worse. The heartache of a premature baby and a life changed forever then the hope of a better than expected recovery and prognosis. The heartache of not knowing if he’ll walk and when he does the hope that he’ll also be able to ride a bike one day. The heartache in watching him attempt to communicate through speech that is so difficult to understand but hope in how he compensates and still manages to get what he wants. The heartache when a teacher has had it with your child and the hope that she will soon see him for who he is (she did). The heartache of seeing how OCD and anxiety debilitate him but the hope of answers from a newly found doctor.

The heartache of not being able to conceive a child but the hope that fertility methods give us. The heartache of learning our child may be born with Down Syndrome and the hope that the odds are in our favor. The heartache of having another child born with a disability and the hope that the severity will be minimal. The heartache others feel for us and our “situation” and the hope they’ll come to feel when they see just how much we’ve come to embrace our “situation.” The heartache of dreams lost and the hope of new ones to come.

The heartache of a breast biopsy that comes back positive for cancer and a hope that it doesn’t mean certain death. The heartache of mastectomies, but the hope that reconstructive surgery gives. The heartache of chemo and its devastating effects on your quality of life but the hope that it will improve the quality of the rest of your life. The heartache of participating in the Race for a Cure and seeing the tens of thousands of lives affected and a hope of unity in the belief that someday there will be a cure. The heartache of finding a cyst in an ovary and subsequent hysterectomy and the hope that the cyst is benign. The heartache of being told that adoption isn’t really an option right before said hysterectomy and the hope that that means just for now.

So it seems that most of my hope has been borne out of heartache. And here I find myself once again. Watching Porter struggle through school has been heartbreaking, not only as a parent, but also as a teacher. Thank goodness he has a fantastic memory, an overabundant curiosity, and a love for the social aspect of school. Overall, his frustration level hasn’t interfered, yet. We have recently had Porter evaluated by a pediatric optometrist who specializes in reading and learning difficulties. He seems to have the answer, a very expensive answer. It means therapy, 2 times a week for 32 weeks along with home therapy exercises, then a month off and then 2 months of once a week therapy sessions. It’s a lot, but it will be well worth the time and money if it works. We can’t not try.

June 25, 2009 "Does Size Matter?"

We just had Parker’s 3 year well child check-up (a month late). His stats include a weight of 23 pounds and height of 35 inches. He’s still a tiny tot! I have to admit, I’m a little worried about his stunted size, even though I realize that kids who have Down Syndrome do tend to be on the small side. In fact, the average height for an adult male with Down Syndrome is 5 feet and ½ of an inch. Parker looks more like an 18-24 month old, so it surprises many that he is actually 3. He has 3 cousins, all little girls, all a year younger than him, and all bigger than he is. But I must note that he is actually barely on the “typical” growth chart at 5% for height and 3% for weight. I have a friend whose experience is on the other end of the spectrum. Her oldest son was 32 pounds and 32 inches at 1year old, and over 100% on the growth chart. He’s maintained that and is currently going into the 6th grade at over 5 feet and 3 inches.
There really aren’t any drawbacks to his size, there are actually a lot of perks! He’s been in size 3 diapers (16-28 pounds) for well over a year (we’re hoping to get him out of them by the end of the summer). We get the best use out of his clothes. He still fits perfectly in his crib and probably will for awhile which will help keep him confined while sleeping. And the best perk of all, he’s not too big to carry around, hold, and cuddle with.
So does size matter? It seems to. I’m always hearing too big, too small, too fat, too thin, too heavy, too this, too that… I really don’t think I ever hear anything like just right or perfectly fine. Just take a look at these two boys,  both in 7^th grade. I find it interesting that there is soooo much size variation between the middle school boys I teach. And even though it’s a physically developmental time in their lives, there is still a lot of teasing regarding stature, especially for those with small or short stature. And doesn’t this continue into adulthood?
The young girls I teach also face issues regarding size, but instead of height, it’s breast size and weight. There is less variation in height for adolescent girls. Adolescence for girls is a time when their bodies develop a shape, and it seems that for the most part, most girls are not happy, not satisfied, not comfortable with, not confident about the shape of their bodies. And again, this continues into adulthood. I know women who have had or talk of having breast augmentations as well as breast reductions, tummy tucks and liposuction.So is bigger really better? More height, bigger boobs, SUVs, huge homes, and enormous food portions? That’s the American way, right? But bigger really isn’t always better, as is seen with all the health risks associated with obesity. Size also matters, from early on into adulthood it seems to be a constant issue. Let’s all be a little easier on ourselves and one another, worry less, be more accepting, and celebrate the unique attributes each individual has. I’ll start by saying that Parker is the perfect size for him! 

June 21, 2009 "Father's Day"

The school year was finally over and I was ready for a break. I told Porter, “Today is my day.” It happened to be a Friday, our designated family day. “Why?” “Because I need a break, so whatever I say today goes.” “That’s not fair.” “Really, because I’m pretty sure every other day is your day.” “You have Mother’s Day.” “So I only get one day a year? I think that your dad and I should get at least one day each week.” Needless to say, when you have kids, it just doesn’t work that way.

Today is the one day of the year designated for fathers. Luckily for me, I know a lot of wonderful dads. My dad is one of those wonderful guys that I speak of. My attitude of optimism was and still is largely influenced by him. My dad would always say, “Hope for the best.” He would also not worry about negative things that MIGHT happen in the future, and not dwell on mistakes/failures that did. He is more of a, it happened, let’s deal with it and move on kind of thinker. I’ve also not heard my dad utter an unkind word about anyone. He doesn’t focus on the shortcomings of others. He doesn’t judge by race, social status, or money. He is a kind man and the best example of what it means to love unconditionally.

Another wonderful father is the one I married. Clint’s baptism into fatherhood was traumatic, but he put his emotions on hold to allow me to deal with mine. He stepped up and took care of both Porter and I, and assisted me in navigating this new and unexpected life we had fallen into. I relied on Clint heavily right after Porter was born, and it wasn’t until much later that I learned what he had witnessed on the morning of Porter’s birth. And after Parker’s birth, Clint did all he could to soften the blow that would come with finding out that we did indeed have a child with Down Syndrome. He was patient with me and didn’t judge me as I was dealing with an array of emotions, all the while embracing us all with his unconditional love.

We brought Parker home from his extended hospital stay on the day that The Children’s Miracle Network was having their telethon. I switched the TV on in the middle of the night during a midnight feeding. There was a spotlight on a boy, around 10 years old, he had Down Syndrome and was also a leukemia survivor. When they asked him what he wanted to be when he grew up his reply was, “I want to be a good man.” I’ll never forget that and I will be forever grateful for the good men in my life.

Get your kleenex ready! I’d love to share some of my favorite father son stories with you. I’m sure many of you are familiar with Team Hoyt. If not, they are a father son racing team and their story is worth checking out. Another inspirational story is about Patrick Henry Hughes and his father. Patrick’s father took a night job so he could participate in college classes and marching band. Cheers to fathers who believe in the unlimited potential of their children!

June 21, 2009 "Update"

From time to time I’ll do a quick update on previous posts. Here’s the first.

Let’s Play Doctor – Since that post which was about 2 ½ weeks ago, we’ve only had 5 doctor appointments which include a couple for my mom. She’s getting her teeth fixed by our dentist here, who also happens to be our neighbor. We have 4 doctor appointments scheduled for next week: Parker’s 3 year well child check, Porter’s teeth extraction, a follow-up for my scar “surgery”, and consultation about Porter’s vision (more on that to come).

Technology – I figured out the reason the Parker picture was so small when I first posted it had nothing to do with what I sent from my phone, but how I had chosen the size option on the website. We’ve been without TV for about a week, and I haven’t missed it, AT ALL. I also know that I don’t speak for the rest of the family. The repairman will be here today.

Mommy Wars – I’m still enjoying my time at home. I’m busy all the time, as I was when working, but it’s just a different kind of busy. We’re busy doing nothing sometimes as well.

M-A-Y – I had to say and then correct my name when I was signing the boys up for swim lessons. After I stated my name, the clerk says, “Is that M-A-Y-N-E?” That’s a first, two extra letters. I’m sure it was because the counter was right outside the aerobics room where an instructor was enthusiastically urging her class to keep up with her.

Golden, Lonely, or Eerie? – I ended up writing my blog and reading for class, which I was late for even though it started an hour and half after the normally scheduled time. But it worked out because the Professor was later than I was.

Surgery #13? – My incision is still under wraps. I just hope it’s behaving itself in there. I don’t want an incision on steroids. I didn’t take any pain meds this time around. Besides not liking pain meds, there’s something about feeling that pain that makes you believe that something was accomplished. You know the saying, no pain no gain.

So there you have it! Have I left anything out?

June 13, 2008 "Reminder"

What you’ll read below was orignally posted on my Caring Bridge page. I’m posting it again because I need a reminder to continue to enjoy life’s moments. My summer vacation just started, and will continue for the next 9 weeks. I want to be sure to insert spontaneity into the structure of our summer schedule. We definitely have things we need to accomplish, but overall we need to enjoy one another and the moments we share together. I still don’t wear watches, and still don’t have a clock in my classroom (it drives the kids nuts!).

TUESDAY, JANUARY 01, 2008 01:26 AM, CST
GIFTS
I used to be obsessed with time. I’d get a new watch every Christmas, different styles and colors to go with different clothes. I currently have 5 watches right now and only one of them is working. It’s the “night, night” watch, my Timex with the Indiglo. I’ve stopped wearing watches because I no longer want time to have control over me, I want control over it. It’s nice to slow down, breathe and enjoy the moments. In fact, I don’t have a clock in my classroom. I replaced it with a sign that says, “Time is passing, are you?” So this is one of the “gifts” cancer gave me.

It’s difficult for me to say that cancer gave me anything good, though I know it did. I just don’t want to give credit for wonderful things to something so hideous. Cancer also gave me a sense of freedom or liberation. I don’t think you would have caught me dancing on a piano at the Tavernacle or on a table at the Contempo company party a year ago. But since I’m living more in the moment, and caring a lot less about what other people think, I expect to have more spontaneous and joyful experiences in the future!

I’ve also experienced some what of a rebirth over the past year. I did not particulary enjoy being reduced to a completely flat chested and hairless woman. But who remembers growing hair from nothing? Since it probably happened in infancy, I don’t think anyone remembers, especially girls. I know that guys shave their heads from time to time, so they get it. So not only do I get to experience a facet of infancy, I get to experience puberty too! My doctor says my breasts are puberty size right now. Funny that he says that because I think I might be a little bigger now than I was last year at this time, and that’s only with 150 ccs in each side.

One other “gift” was there all along, all the wonderful people in my life. I already knew that I had a fabulous family, friends, neighbors, and coworkers and now medical staff. But my appreciation for them has grown and so has my need to spend more time with them. I also enjoy every moment, just about. Simple moments, quiet moments, quick moments, living in the moment. It’s a fun way to spend time with my boys, my big boy, little boy and baby boy. Don’t let Porter know I called him a little boy.

June 3, 2009 Let's Play Doctor

Between the 4 of us, we’ve probably had 15 or so medical appointments from the first of the year until now. That number doesn’t include any speech therapy sessions for Porter or Early Intervention classes or therapies for Parker. Really, 15 is a pretty good number considering that two years ago it was more than twice that number in only four months.  And luckily, both boys are model patients, most of the time. They know when to open, turn, lift their shirts, etc… It’s routine for them.
We are so grateful that we have medical insurance, because even with it, the bills add up. I’ve also realized that because we have insurance, we get better care. Better might not be the right word, maybe more consistent care or easier access to specialists because insurance has made it more affordable.  We are fortunate to live in an area with such great medical facilities and doctors. Our doctors are wonderful and I appreciate all they have done for us.

I often joke that one of our family’s extracurricular activities is doctor appointments. There are 13 doctors listed in my contacts on my phone. In fact, I had an appointment just this morning and found out that I have Benign Episodic Unilateral Mydriasis. That basically means that I have unevenly dilated pupils (the right is larger than the left) and it will come and go, but it’s not hurting anything. My 3 month follow-up with my oncologist was almost 2 weeks ago. Everything checked out fine and now, over 2 years after my diagnosis, my follow-ups will be stretched out to 4 months, then 6, then a year….

Parker is overdue for his 3 year well child check. I finally made the appointment yesterday, but couldn’t get him in until the end of this month. Parker’s last doctor appointment was with his ENT for an ear infection, something he is prone to. Before that it he was hospitalized for 3 days in March for dehydration due to a stomach bug. His medical to do list includes an appointment with his cardiologist for his annual echo which will be sometime this summer.

Porter’s last appointment was with an orthodontist, who thankfully said that he’ll see us next year. But in the meantime, he has recommended that Porter get 2 baby teeth pulled. Another summer activity for us. Other than speech therapy, Porter hasn’t had too many doctor appointments this year. He’s been relatively healthy, at least physically. There’s been an issue with some OCD behaviors and anxiety which we think has a biological basis. We’re working with a naturopathic pediatrician to try and come up with some answers.

Clint’s last medical appointment was with a dermatologist, and the one previous to that was with the dentist. He’s the least medically involved member of our family.

May 31, 2009 "Lightning"

Lightning never strikes twice in the same place… or does it? Lightning, lightning bolt, struck, bolt, electrified, etc… were also names under consideration for my blog, all related to an old English proverb and also to my life. Porter was my first lightning strike, Parker the second. The circumstances surrounding Porter’s birth and related disability were quite uncommon compared to all of our family and friends.  No one in Clint’s extended family had any children with disabilities, and it is a LARGE extended family. The same was also true for my smaller extended family. None of our friends had anything but healthy, typically developing children as well. We were the exception, the statistic, the unusual.

One of the courses for the special education license I was earning was all about the many different medical complications, diseases, syndromes, etc… possible for infants to be born with or to develop. Of course, in the overall scheme of things all of these conditions were rare, some more so than others. Even so, I vividly remember having a conversation with Clint about it in our kitchen. I was relating to him information about some of the more rare medical situations involving infants. I then told him that with all the things that could go wrong it was surprising to me that so many babies were born normal.

As our conversation continued, Clint brought up kids that have Down Syndrome and described them as many do: happy, loving, sweet. Then I countered with the possible medical conditions related to Down Syndrome: heart disease, gastrointestinal problems, vision and hearing issues, leukemia. Then I said something I thought I’d never say. I told Clint that if I knew that I was going to have a child with Down Syndrome that I would consider an abortion. (A side note, at least 90% of women who are given a Down Syndrome diagnosis terminate their pregnancy.) Little did I know at the time.

I consider myself to be pro choice, but for me personally, pro life. I remember the surprise, maybe even shock, on Clint’s face when I said the word abortion. I think I actually surprised myself too. I explained that I just didn’t think I could have another child with a disability. Actually, at the time I knew that I could do it, I just didn’t want to. Six years after Porter, about 3 years after that conversation, was when I was hit by lightning a second time. Parker was born with Down Syndrome.

So lightning does strike twice, contrary to the popular saying. In fact, I did a little “research” on the term. By research I mean that I surfed the net for information regarding this proverb. What I found was that studies show that lightning does strike two or more times in the same place. Imagine that! So actually, instead of being the exception, I am the norm… or am I?