Bouncy Birthday

Because of  Toe's CF and our need to avoid germs, Toe has not been to many kids' birthday parties. They are often held at indoor play spaces (germs), bowling alleys (more germs), or other public venues and in general we have avoided them. Last summer he was able to attend one at a friend's house that was simply wonderful, but that has pretty much been it. Until Saturday.

My friend has a son nine months younger than Toe. They play together really well and over the past year, we have had  a number of play dates together. When she emailed that Mr. G's fifth birthday was coming up and it would be held at the local "Bouncy House," I couldn't say no. So we went. Toe loved it. He loved the three bouncy houses, the things to ride on, and playing with the other kids . The party had a relatively small group of kids and there were not many other visitors to the place that day. I put myself in zen mode and went with the flow. Toe ate applesauce and carrots with juice for lunch (forget his high fat diet) and played for two solid hours.

Afterward, we drove 1 mile to my mother's house, stripped him, and put him in the shower. One shower and a change of clothes later, we headed home.

It is tough finding a balance for Toe's health. I don't want him to get sick, but I want him to have as normal a childhood as possible. It seems that every choice we make is a calculated risk. I think Kindergarten has been good for me in that regard. It certainly is a calculated risk every day; and in comparison, the Bouncy House didn't seem so bad. Toe now wants to celebrate his birthday (in January) at the Bouncy House. We're going to have to really think about that one.

So now we wait to see if he caught anything....

Consequences

Well, Toby learned a new word yesterday: consequences. He was already familiar with cause and effect: if you have your hand near a nail and miss, you will likely hit your hand. He's not great at predicting cause and effect, but he respects my judgement most of the time.

I must preface this story by saying no none got hurt, nor did anything major occur. But I feel that by introducing that word to Toe, we have entered a new phase in our relationship, one where Toe is expected to take more responsibility for his actions.

I also have to say, being an only child sometimes stinks. You can't get away with anything. If Toe had a younger sibling, this event would have probably gone unnoticed or would have happened with a quick clean up and not the "consequences" that happened. I have a niece who does this kind of stuff regularly when my sister's back is turned.

The first time it happened, I let it slide.

Toe was given a lovely box of blocks that had a layer of Styrofoam at the bottom. The blocks nestled perfectly inside the box and it took some serious concerted effort to make them fit. It was a puzzle complicated for an adult, so the blocks were moved to a bigger venue. The box with the Styrofoam has remained in the living room. One day I found Toe poking holes in the Styrofoam with a drumstick. He was having such fun, I didn't want to take it away from him. I said, "Hey Buddy, did you ask me if you could do that?" Long pause.
"No."
"Next time, ask me before you start tearing apart something like that. I'm fine with it, but ask please."
"Ok Mom."
He went on poking holes.

Toe has worked on this piece for weeks. Slowly ripping off pieces, rolling them in his fingers until they break into small pieces, poking holes in the middle and seeing if any pieces drop off. It has been a complete project and I have been fascinated by the intensity with which he approaches this.

He got ready to work on it the other day and I said, "There are getting to be a lot of little pieces in there. You can play with it in the box, but I don't want you to get any on the floor."

Thirty minutes later, his bedroom floor was covered with Styrofoam snow. "Toby, I TOLD you I didn't want you to get any on the floor. Now you need to pick it up, every last piece."

Toe said, "You'll help me, right?'

"NO," I said,"I won't."

"But that's not fair," he said, "We should pick it up together." (we do almost always clean together).

"Not fair?" My voice was rising a little by this time, "I ASKED you not to spread that around and you  CHOSE to do it anyway. When that happens, there are consequences for your actions. You need to clean it up."

Long pause. "Ok, you might have a point there." Longer pause as he picked up the tiny pieces, then, "Mom, this goes a lot faster if we work together..."

Needless to say, Toe picked up all of the Styrofoam pieces and we talked about how hard they are to pick up. I told him that when I was his age, we had a bean bag chair with a bad leak and my mom removed all of the Styrofoam balls and stuffed it with giant chunks of foam rubber (not the most uncomfortable solution, but highly unattractive to a five year old).

All in all, I think the lesson went pretty smoothly. Time will tell if it stuck. The more I thought about it, the more I realize that consequences are a huge part of our adult lives. And often, we don't think about consequences when we act. Or we weigh the consequences with our desire to do whatever it is and desire wins. When I go to bed late, I often do it with the knowledge that I will pay for it the next day or the day after (this gets worse, the older I get). When I eat foods that are great for Toe, but not so great for me, I pay for it over time. Pretty much every action has a positive or negative consequence, and although I advocate living in the moment as much as you can, I also believe it is important to be aware that choices made now will have those consequences. Toe's lesson could have been easily applied to many of the choices I make, except as a grown up I don't get called on it as often.

So, consequences. You can bet Toe and I both will be paying a little better attention to the possible outcomes of our actions.

Junior Ranger

The Netul Landing, about a mile from the site

 On a sunny day a few weeks ago, I took Toe to Fort Clatsop for the first time. It was a perfect afternoon - sunny with little wind. We decided to hike in, so we parked at the Netul Landing and began to walk. Along the way, we stopped to look at "fuzzy bear" caterpillars, dried leaves, and anything else that struck our fancy. We saw a heron perched on a tree nearby. The river was beautiful.

On the trail

I have not been to the fort since it burned down and was rebuilt (around 1997). Sadly, there were no demonstrations that day, but they now have a large screen computer in the lobby of the Visitors' Center that has videos of candle making, rifle loading, bullet making, and other demonstrations they do through the summer. They also have an incredible movie of the Lewis and Clark Expedition told from the Clatsop/Chinook perspective. It does a really great job of putting the Expedition into the context of the people who actually lived here all of the time. We learned about Clatsop/Chinook lifestyles and perspectives.

At the National Parks, they have a Junior Ranger program where they give you a workbook (ours was for kids ages 3-8) where you do the same number of pages as your age (for Toe - 5 pages) and then you receive a Junior Ranger badge. The pages offer a variety of projects: coloring, word find, plant identification, a rebus story, map identification. It was a great way to help Toe pay attention and the payoff was pretty amazing. He had to take the Junior Ranger pledge and then was given a badge and some patches. After the pledge, the volunteer at the desk got on the loudspeaker and announced that someone had just earned their junior ranger badge and everyone there (all grandparents - the area draws them this time of year) applauded. Toe left the Fort glowing. I can see we likely have Boy Scouts in our future.

Guarding the Fort

With permission from Toe, here is Toe's journal entry from that day (he dictates and I ask him questions and between the two of us we get it written down):

"I became a Junior Ranger in just five and a half years. Young, huh? It had mostly to do with the pledge. It also had to do with my Junior Ranger stuff. I am Captain of the tribe.

We went to Fort Clatsop today. We walked two miles - one there, one back. That's kind of like the Aquarium to Dama's. A lot of blocks is a mile. We walked on a rocky path. We found three fuzzy bears along the way - two going forward and one on the way back. Today was a great day. Sadly I didn't find any more fuzzle wuzzle bears. I named them all. One was Fuzzy Bear. Another was Cuddlepie or cut-a-pie. My brain says I don't think I remember the third one.

At Fort Clatsop we saw some trees. We saw the Fort. The fort was a place that went back a lot of years ago. We saw movies - of a mother telling young people that her father traded with Lewis and Clark. There was another woman, she had a baby (Mom's note: Sacagawea). There was another movie where they were firing a gun and a cockpit (?). You had to load it every time because it was a single shot weapon. And sadly the animal would run away if you missed, because he'd see you shoot."

Playing soldier, allowing entrance to the fort

Pretending we lived there

Taking the Junior Ranger pledge

His new badge

On the Trail on the way back, Toe stopped everyone we ran into and dug through his pockets to pull out the two patches he earned and had to show the patches and his badge. Every person we ran into took the time to listen to him and wait while he fished around the gazillion pockets of his Junior Ranger vest (gift from Mom for the occasion. I couldn't help it). Thank you to all of the grandparents who take the time to listen to random five year olds!

Real Men

I was walking along the Riverwalk yesterday when I saw a man who obviously works out, with his baseball cap on backward, pushing a stroller with a small fluffy dog inside. He walked beside a woman walking another small fluffy dog. I wish I could share the image with you, but I thought he probably wouldn't take kindly to my asking to photograph him for my  blog. He was truly a juxtaposition of images. "Now that's a Real Man," I thought.

And then I felt silly, because I know nothing about this person, really. What a stereotype I made. And really, what makes a real man? You see posts  and images on Facebook (We don't watch tv, so I don't see commercials, but I'm sure they are the same) all of the time - real men respect women. Real men watch football. Real men take out the garbage. The list goes on. Everybody has an opinion.

Truthfully what makes a real man? The Y chromosome, maybe. Although there are transgender people who would argue even that and I certainly would not argue with anyone who worked so hard to become a man.

I know many men, and they all have different qualities I admire and different deficiencies (don't we all? I do!).

I have a similar problem with the "Real Women" images and statements I hear. Real women have curves (some don't). Real women are strong (what does that mean?). Sometimes I like the "real women" statements because they maybe apply to me or I want them to apply to me, but that doesn't mean it applies to everybody.

Personally I think J is a real man because he is who he is and doesn't worry if something is manly or not. If he likes pink, he wears it. If he wants to kiss his son in public, he does. He is a goofball. He is a nerd. He is himself.

I admit that there are some qualities that we a society prefer men to adhere to: Men don't use unnecessary violence or sexual aggression on other people, for example. But some men do. Does that make them not "Real Men?"

Here are some of the qualities I hope to instill in my son as he grows. They are culled from many of the men I know (and I am very lucky to know a lot of wonderful, caring, delightful men).

• Respect. A respect for people, animals, his surroundings. This one is maybe the most important to me. I highly value people who treat others and things with respect.
• Compassion.
• A sense of humor and the ability to see the humorous and absurd in hard situations.
• Emotional Intelligence. He should be able to identify (if not understand) his feelings and the feelings of others.
• The ability to share love and to have moments of gentleness.
• A willingness to compromise but also a knowledge of what is a deal breaker.
• The ability to negotiate, discuss, and problem solve.
• Confidence (physical, emotional, mental).
• The understanding that we all make mistakes and that you learn from it and let it go.
• Kindness (and the ability to stand up for others who need it)
• An understanding of the difference between joking around and mean teasing.
• An ability to make and keep both male and female friends.
• To have passions and not feel guilt even if they are not popular.

I don't know... the list goes on.
Will he achieve these lofty goals I have for him? Maybe not all...Likely not all. Will that make him less of a man? No.

CF Checkups

Don't panic! This is just a test.

 For those of you who don't know, my son has cystic fibrosis. We drive two hours every three months to the CF clinic where they check his growth, have a check up, and take a sputum culture (commonly known to the rest of us as throat culture). The throat culture is done to identify the bad bacteria that are currently growing in Toe's lungs, so that if he suffers from an exacerbation (a flare of of said bad bacteria), the doctors will know the most effective antibiotics to prescribe for the specific baddies in Toe's lungs.

During the clinic, we meet with our nurse (the master-coordinator who is the point person for every child with CF in the clinic. He answers our questions or directs us to those who do. He is a superhero and we worship the ground he walks on), one of the five-six pulminologists who deal with CF (We like them all. We mostly see Dr. Link, a phenomenal doctor who really listens and gives you time to process information and form questions), our dietician (who has helped us struggle through Toe's early cow-milk protein allergy and has been the one to push Toe's weight gain in an effort to help Toe's lungs develop properly), and our social worker (also amazing!). They set up the meeting for fifteen minutes, but the process usually takes about two hours on a regular day. We are given ample time to address any concerns that have come up in the interim and have our questions answered.

We're on a pretty regular schedule. Check up every three months (this will continue for his entire life) that includes a throat culture, blood draw once a year to check the vitamins, sodium, and other goodies in his blood,  and a chest X ray once a year.

At five and a half, Toe is ready for a new assessment: the lung function test. As this is new to us, I am not as up to speed on what we're doing here, but here is what happened. First Toe had to be decked out in haz-mat gear. He was then given nose clips. This is to ensure that during the test, Toe is only breathing through his mouth and into the machine.

Toe gets nose clips

"Turn so your mom can take a picture!"

 Next, he was taught how to properly breathe into the device that would measure his lung function. He watched the monitors (behind them in the photo) and would take 4-5 normal breaths and then a huge breath in to blow out the image of candles on the monitor (which much have been attached to the machine, because they responded to his breath). For a first time, he did really well, although he needs to work on a long out-breath to completely empty his lungs rather than one forceful huff.

Kim was fantastic. She made the whole process playful and fun.

We were then given reminders about how to do PEP and huff-cough technique as well.

Outcomes from this particular visit:

• We are still addressing the dry cough Toe has had since May. Since he caught a regular cold Friday and still has that cough, it was difficult to assess whether the two week course of antibiotics he just finished helped to eradicate the other. We will have to follow up on this. In the meantime, Toe continues to take Flovent, an anti-inflammatory, in case he has asthma (Apparently there is a kind of asthma that just has a cough, but does not involve wheezing. The things you learn...).
• Toe's height:weight ratio put him in the 66th percentile for children his age. This is HUGE. To have his lungs develop properly, they like to have him above the 50th percentile. We have clawed our way up from the 7th percentile two years ago.
• They want to have us change from the percussive therapy (also known as "clapping." We call it "Whack-a-Toe") to using a vest or PEP. This is an entirely new protocol to us that involves very specific and focused breathing through a series of exercises. I'm a little daunted, but we will figure it out. All of these types of treatments help to move the mucus in Toe's lungs after breathing treatments aimed at loosening said mucus. Loosen it up, move it out. We do this 2-3 times a day, every day.
• It was recommended we raise the head of his bed 10-15 degrees to help with his night coughing which we believe is due to acid reflux. He is already taking high doses of omeprazole for his CF (similar to Prevacid). We tried this and  he did not cough last night. Huzzah.

Also, J got a flu shot yesterday. Toe will get his flu shot as soon as the pediatrician gets in the vaccine.

Long day. We celebrated with dinner out. 

 Here are some photos from the drive home.

Art?

 At the local hot rod show a few weeks ago, we came across this signpost. Yes, it is gum. All of it. The black stuff, the stuff that looks like rubber bands, the blue, the pink, the white, all gum. A good four feet of it. My initial reaction was complete revulsion. And then I really looked.

I was oddly fascinated.

Many years ago, I went with J and some close friends to the Museum of Modern Art in New York City. It was in its temporary space in Brooklyn at the time. We had a great visit, but the question of "What is art?" came up (as it should, when looking at modern art). My friend, who is much more versed in art and art history than I, said she thinks art requires some kind of proficiency and technique. She pointed to the piece of art we were examining - basically a two-toned canvas. I think it was probably red and white. Half the canvas red, half white. My friend said to look where the two colors met, the line between the two was completely straight and a clear division of red and white. It is hard to paint a straight line, let alone, have those two colors abut in so perfect a way.

However, it made me think of house painters. They get pretty straight lines. Does that make them artists? I know that is not what my friend was saying, but it was easy for me to extrapolate to the nth degree. And why not? If a house painter paints with skill, care and pride, doesn't it make it art?

Personally, I don't have any answers about what art is. I love the question, though. I love rolling it around in my mind, just for fun. It is one of those things my brain just likes to chew on. I like having possibilities rather than an answer. A couple of years ago, my perspective was broadened when I was introduced to the world of industrial art (thanks Scott). So much time and attention goes into so many items we take for granted every day - chairs, toothbrushes, can openers, wallets...and the focus changes depends on the artist. For some, it is comfort. For others, aesthetic and functionality. I believe that you can be an artist designing things like chairs or computer frames. I personally like art that takes me out of the mundane, makes me take a second look and think. I also think art that has multiple contributors is fascinating.

So I have to say, when I came across this...this...ode to gum, I had the odd feeling that I was looking at a piece of art. Each person who had chosen to put his or her gum there had chosen a spot carefully. It did have a kind of aesthetic to it. The black gum underneath showed that this was a work years in the making. It has a kind of fluidity to it because there are obviously pieces that have fallen off and new pieces are being added all the time. There was gum still fresh with saliva mingling with blackened tar that would not even be recognized except for its context. It certainly made me stop and think.

Actually I thought it was a fair tribute to Seaside as a tourist destination filled with people who come to ride surreys, eat snow cones, go to the arcade. There is of course more to the town. The beach is beautiful, the people are friendly, there is a sense of community... but this particular monument did not reflect that aspect of Seaside's legacy. This represented Seaside in the summer when people come from all over to have a good time and often ignore the fact that people actually live there. The town becomes sticky, gooey, and kind of sad by the end of the summer. And there it was, all on a pole, for all to see. And contribute. If I had been chewing gum, I would have added my artistic flair.

The Honeymoon is Over

Yesterday, as we were working through our morning breathing treatment, Toe said to me, "I don't want to go to school today. I just want to stay home and play with you." My heart dropped.

"Don't worry," I said, "today is a short day and I'll make sure that we don't have to do any errands after school so we can just play." This seemed to pacify him for the time being. The poor kid has had a rough time. The start of school coincided with a bout of antibiotics, which involves an extra breathing treatment. Between meals, school, breathing treatment, and transitions (to and from school, the shower to eradicate germs after, etc.), the boy has had little time to play. Antibiotics also traditionally are hard on his body. He is wired all the time, talking a mile a minute and having trouble with focusing/ concentration. Imagine Robin Williams doing stand up in the 80's, ant that's what it's like to live with Toe 24/7. He has trouble sleeping and little appetite. We know they are necessary, but it is hard slog getting through them.

However, when we got to school, he didn't want me to leave him in the line with the other Kinders outside the school like we have done for days. He wanted me to escort him into the school. Inside the school, he wanted me to escort him downstairs to the cafeteria. I got him to sit down and was ready to leave when he said, "I want my MOMMY!" in this desperate voice. I went upstairs and got a visitor's pass and sat with him through lunch. He snuggled into me the whole time. When their teacher came, I knew it was time. He wanted me to escort him to the classroom door and I said, "I have to go now, I need to turn my pass in at the office and I need to go up these stairs to do it." I knew he would be ok when I left, but I wanted to allow him the time he felt he needed (within reason) to separate.

I am so conflicted about this. I remember hating Kindergarten because it was much more fun to be at home with my favorite people (my family). I did not remember that I caught scarlet fever in my first weeks of Kindergarten - Mom had a brand new baby and thought my complaining was to get a chance to stay home....I went from strep throat to scarlet fever rapidly. Mom is still mortified.

Last year in preschool, as each day passed, Toe became more excited to go to school. He had friends, he got to play and explore with new things, he came to have a second home. Public school is so different. Can be so different. I am pretty sure Toe has a good teacher. I have had positive interactions with her. Her classroom is inviting and has a good balance of play/educational materials. She seems really together and has taken our specific CF needs in stride. I think it's just the nature of the beast.

Toe is having to learn institutional social structure - how to walk in lines, how and when to pay attention. He comes home telling me about songs he learned or games he played in P.E. and they sound Kinder appropriate. But the teacher has admitted she is feeling the half day pressure. She has a lot of material that she needs to teach and a short amount of time to do it. So free play is limited and recess does not happen every day. Meanwhile, they are taking the week to work on the word "the" (also Kinder appropriate, but this can not be helping my boy who is a fluent reader pay attention. Not the teacher's fault, just a reality).

We have discussed home schooling Toe, but realized early on that he needed a kind of socialization/social interaction I can't give him. You get it from interacting with children your own age. Before that we had never considered preschool. But we realized that Preschool and Kindergarten are really the main areas of school where you get any kind of social instruction for dealing with groups, working with others, learning how to compromise and share, and just generally how to get along with others. Toe is great with adults when he is the center of attention, but he needs work with other children. If we had other children, I don't think this would be as much of an issue.

So then the plan was that we would put him in preschool and maybe Kindergarten and then see how it went. Preschool was fantastic. Better than I could have hoped for. And when it was the end of the year and everyone was getting ready to move on, we considered keeping Toe at the preschool for another year and then putting him in first grade. But all of his friends were moving on and when we went to the local Kinder registration, Toe said to me, "MOM! Next year I'm going to KINDERGARTEN!" We opted to try it.

We have put in a lot of work in preparation, getting everyone up to speed on CF. And I feel we should at least give it a chance considering how much the staff has been willing and ready to accommodate our child's unique needs and also that this is only the first week of school. I believe in public school, I do.

Having said this, a small part of me whispers, "If he's just going to get sick from this, why are we doing it? If we're homeschooling next year or the year after, why are we putting in all of this effort now? Shouldn't we just pull him and send him back to preschool where he will be getting the social instruction he needs? I'm pretty sure he's going to be bored with the curriculum. I could do this..."

When Toe got home, I asked him if he's liking Kindergarten. He said, "I think I want to be liking Kindergarten." I asked him if there was anything he didn't like about it. He said he didn't like that he had to listen to the teacher all of the time and there was not enough playing. I think that's a fair assessment.

In a weird twist of fate, Toe had funny blisters on his hands that were odd enough that I kept him home today. One doctor visit later, we are still clueless about the rash/blisters but we have the ok to send him to school again.

I asked him tonight if he liked Kindergarten and he said yes.  I know the antibiotics and breathing treatments are causing frustration because even with no school today we had a rough day and Toe was complaining about everything I did (not enough play). At the doctor's office, he was downright manic, talking nonstop the entire time.The poor kid is struggling.

I don't have any answers. We will continue to send him for school for a few months to see how it goes and probably reassess then. In the meantime, this is a major transition that looks to be a little bumpy.