Imaginary Play

I recently pulled out our nativity set and told Toby the story of the birth of the baby Jesus. He loved the story and the nativity set and sat down to play. A while later, some other toys had migrated to the manger and I asked him to tell me what was happening.

Apparently Finn McMissle and Holly Shiftwell (two characters from Cars 2) came to see the baby Jesus and bring him presesnts. Upon further questioning, Finn and Holly appear to be the biological parents and Joseph and Mary adopted Jesus. From the cars' appearance with presents, I presume this was an open adoption.

2011 Highlights

Here are the fabulous events that we choose to remember from a year of ups and downs:

• The remarkable support we received when we learned we had to move in 30 days. Our friends rallied and got us packed and moved into a new house STAT.
• Visits from Grandma Gus and Grandpa Boat (J's parents) and Uncle Awesome (J's brother who came from South Korea) for Toe's third birthday.
• Performance (J and B together!) in Almost Maine at Pier Pressure Productions with many of our favorite actors in the region.
• A week long trip to Corpus Christi to visit the Grandparents: Toe's first circus and first time to the Texas State Aquarium.
• Five months of play with B's sister and her daughters during her brother-in-law's deployment. Toe and the girls adopted each other as siblings.
• Uncle Awesome visiting regularly and teaching Toe all kinds of new words and ideas (mostly appropriate).
• A wonderful visit with Mary Fleeger and her family who were camping in the Tillamook region.
• Bonfire at M & R's house.
• Visits with many loved ones.
• Family camp for B and Toe at Camp Namanu with Grandma, Uncle James, a family friend, Aunt Beck and the cousins.
• Local Premiere of the movie Crimps, featuring many of our friends and with J and B in small roles.
• A trip to Cheyenne, Wyoming for B and Toe to take care of the Anderson family for a few weeks (more play time for the cousins, including snow ball fights).
• Uncle Awesome cooks Thanksgiving dinner and all kinds of amazing meals for us.
• Toe becomes potty trained (and there was rejoicing!)

We have also had many visits to the Oregon Health Sciences University Doernbecher's Children's Hospital to monitor Toe's CF, many trips to the zoo, play time on the beach, at the playground, and on the Riverwalk...

Every day is an adventure, with lots of laughter and sometimes some tears. We have amazing friends and family. What could be better than that?

Love and Joy and all that

We have had some really amazing visits with close friends in the past few weeks and I have remembered how much I love the time of year between Thanksgiving and New Year's. We don't worry too much about the gift aspect or the need to decorate. Our attitude has kind of been "if it gets done, great, if not, we've been doing more important things." It seems to be a time of year, though, where we take time to visit with people we love a little more. We have a few potlucks with our local friends, other friends come from out of town, we play with friends' children, we make visits...

Lori and Miss M hold Ann's daughter

To add to the good fortune, J's brother has been staying with us and we have been able to reconnect after almost fifteen years of him living abroad. He has been a wonderful addition to our family, a help around the house, and a *mostly* good role model for his nephew.

As we spend time with these people, I am reminded how smart, funny, interesting, and supportive our friends and family are. I feel incredibly fortunate to know everyone, let alone call them friends. J and I feel that we have an abundance of riches and this time of year, I am almost overflowing with the joy of it. I don't know. We appreciate our relationships all of the time, but somehow as we get to the holidays, my senses become heightened and I go into overdrive (in a good way).

With Ana and Rob

If we have seen you lately, thanks for the great time.  It has affected me more than you think. If we have not seen you lately, it is only a matter of time. We love you and are thinking of you.  

Typical November Afternoon

J's brother is amazed by the beautiful weather we have had this November. He had forgotten that where we are, there is no sun in July, hardly any in August, and then we get it sporadically in Sept-Nov, followed by violent storms for six months. Each day of sun is an absolute joy.

That "Got to go" Feeling

We have been taking a week of vacation to relax (and do potty training).

Toe's doing really well. J has been doing the lion's share of visits to the bathroom with him. Is it common for a kid to need to go three times between changing into pjs and going to sleep?

BTW, Pirate Potty is a family favorite.

Looks Great on the Outside... Mostly

I think we are going to remember this year as the year that kicked us repeatedly in the kidneys. That said, we were able to recover each time and we remain relatively intact (although panting heavily). This seems to be the MO of many of our friends. Separations, deployments, cancer, business fires, unemployment, heart attacks, all in our close vicinity have reminded us that although we have had a rough year, we have fared better than many. Challenging. This has been a challenging year.

So where are we as we close in on the end of 2011? Toe is on two weeks of antibiotics for a mild exacerbation (read lingering cough) that won't go away.

Our last visit to the CF clinic shook us a little. They took X rays and informed us that Toe has mild airway thickening. No scar tissue, but there is a difference from his last lung X-ray. This should not surprise us as we know this disease is progressive and the last X rays were taken when he was a baby (he will be four in January. He is growing so fast!).

We were also informed that although Toe has been growing steadily, his height/weight ratio is not acceptable. It has been proven that young children with CF who have a ratio above the 50th percentile have considerably better lung development. Toe is tall and skinny. In August he was in the 8th percentile. We have been able (through extra fatty snacks) to get him up to the 22nd percentile, but we were informed at the last visit that if we can't get his height/weight ratio up to the 50th percentile in the next 6 months (and keep it there) they will recommend having a G-tube (gastrointestinal tube) placed permanently in his belly. It would remain there at least through his teenage years, whether we would be using it or not, as teenagers often also need the extra  "boost." Every night we would feed Toe enriched formula via IV drip through the G-tube. The nutritionist brought out a teddy bear with a g-tube "button" to show to Toby and had the talk with him. We left the clinic reeling.

I recognize a G-tube is not the end of the world; it may very well be the best choice for him. But here's the trick for us about having a young child with CF: sometimes it becomes easy to pretend that he's a healthy child. I admit, we are always doing unusual things. I don't know any other three year old children who have to do breathing treatments via nebulizer and then percussive therapy twice a day and who take enzymes (I do know they are out there, but still...) But with Toe as our only child, we have been able to normalize the abnormal, the excessive hand-washing,  the treatments and medications. He is not in school yet, so he does not know his peers are doing anything different. We feel like a normal family. And the last few years, our visits to the clinic have been pretty standard: keep up the good work, carry on.

He looks normal. People who know of his condition always comment on how good he looks.  How healthy. People who don't know would never suspect. He is energetic and charming and verbal and perfect.  Sometimes it is easy to live in denial, to imagine that we will be able to keep him healthy until a cure is found and then he can lead a normal life. But meanwhile, things are progressing inside of him.

And I have to face the harsh reality that no matter how hard we are trying, no matter how much we follow the guidelines, our boy is sick and this disease is progressive and we can't fix him. We have the willpower and we will fight every step of the way; but there are times it won't be good enough.

The nutritionist said at the visit (Monday before last) that if his weight had not come up since the August visit, she would have pushed to have him admitted into the hospital for the G-tube surgery that day. And it could have been up to a 10 day stay (7 days to get his lungs as healthy as possible for the surgery and then 2-3 days after the surgery for recovery. If his lungs were in good shape, it could have been as few as 3 days). Admitted that day. I was struck by how imminent a hospital stay could be, just out of the blue. Thought we were going in for a standard check-up and have my child admitted for almost two weeks.  Kind of makes you not want to make any plans...

We are discovering and are constantly reminded that this disease is working in unseen ways, that we will have periods of calm, but there are unpredictable storms on the horizon.

My sister tells me I should join a support group online. Patients with CF are not encouraged to be in close proximity of each other because they can transmit various lung bacteria to each other, so there are not huge gatherings. They have a support group meeting for parents two hours away once a month, but we have so far been unable to attend... Honestly, I'm not sure if I'm ready to see the big picture. Gradual shocks that we then adapt to and incorporate into our lives is about what I can handle for now. I don't know.

I'm not writing this for advice, or even words of encouragement. I'm just writing because this is a very real part of our lives and sometimes it is easier to post something than to have a conversation about it. I sometimes feel too raw for that.

And then my son comes to me and looks me in the eye and says, "Mom, pay attention to me," and I look into his blue eyes and see that I am not being present.  He is here, right now. Agreeing to take the meds (actually enjoying the orange flavor of the cephalexin), doing the breathing treatments without complaints (even though he does not like them), and enjoying every moment of life. It's for him. It's all for him and he has such grace, I'd better bring my A game. And we'll face the G tube, surgeries, whatever comes.

In the meantime, I'm baking pies to fatten the boy up. We're not to the G tube yet...

Off to be a mom....

The Ever-Changing River

Our view is pretty spectacular. We watch the ships come and go on an hourly basis. Barges, car carriers, tug boats, ships and boats of all shapes and sizes pass through this area on their way to ports upriver. And we are constantly monitoring: counting ships, watching seagulls and crows, watching for movement. We are very close to town and Toe is now able to walk to the Riverwalk without much assistance. Seems like we are tuned into the tides and the river's flow more than we ever have been. And that's saying something considering J's line of work.

A Study in Wallpaper

The house we moved into in late January looks a little like a pattern department for Laura Ashley stores, circa 1990's (maybe before). Each room is different. Some are not bad. Some push my buttons.

Living room

In the living room, fhe flowers are not to my taste, but....
The dining room is my favorite room in the house.

Dining room

Did I mention "Country Kitchen??" There are even wallpaper decals inside some of the cupboards.


Kitchen

The master bedroom is what gets me. The "window treatment" finally came down, but the wallpaper is so BUSY, it's like trying to sleep with bees flying around. I hardly ever turn on the light in this room. 

"Master Bedroom"



"Master Bedroom" Close up

We've worked to make the place like home, but we have not unpacked fully, as the house is sort of small and we're not sure how long we'll be here.

 But I have to say, the view isn't half bad... :)

Ch-ch-changes

So first there was Christmas. Then New Year's. Then we were informed we had 30 days to move (the landlord just wanted his house back. I would too. It was a wonderful house). In the thirty day limit, while moving (the move was sponsored by all of our friends and their vans), we celebrated Toe's third birthday with his grandparents visiting from Texas and Uncle Awesome visiting from South Korea. J and I rehearsed for a play (that ran last weekend). I also finished the first draft of the Aquarium book.

The amazing part is, we did not kill each other. Very few cross words happened. However, it is not over yet. More chaos until March 14, followed by slight chaos, you know...forever. I am just trying to take things one step at a time, because that's all I can face.

We are in a house that meets our needs for now. We are healthy. We all still love each other. I am grateful every day.

And Toe is a trooper. He's tired. He's cross. He's three and has embraced the phrase "I won't." But somehow he still manages to smile like a fiend and the whole world melts away.

Shouts out to our amazing friends who packed our belongings and carried furniture up a long flight of stairs, to Jason's folks and brother who made a great effort to share Toby's birthday with us, to my mother who watched Toe, packed, and was a general superwoman. And Ron who worked for a full day on the new house. And Jamie. And...The biggest shout goes to my boys, of course. J worked SO HARD to make this month happen smoothly and was kind throughout. And Toe rolled with the punches as much as any kiddo could. And of course they both provided comic relief. Lots of loud comic relief.

It's funny. I crave change. I want to be able to embrace change. But when it actually comes, it kind of stresses me out. Would that I could relax and ride the wave.