Sunday, August 11, 2013

All About Me

As the first full week of school came to a close, 2 kids came home with weekend assignments. Now of course it wouldn't be the Princess or the Pig Pen who have no problems discussing themselves- it had to be the high schooler and the monkey. The 2 very children I spent the better part of the week culminating and relaying medical information on. I let them take the reigns.

Phillip wrote a list of pictures he required and handed me a thumb drive. He then sat behind me and vetoed photos that I paused on for more than 2 seconds. Ultimately I am lucky that our sense of humor is the same and got some bonus mileage out of about 3 wax museum pictures and a particularly endearing shot of him playing Adele's Someone Like you on his baby cousin's Fisher Price Piano for his section about the role of music in his life...
He would periodically ask me questions- I'm pretty sure just to gauge my "adult" response.  Hey what are those finger pricker thingies called? Oh dear God please tell me you know they are called Lancets? Knowing teen smile... So you are going to talk about diabetes? The guilt still hasn't settled that I have yet to actually speak to a human at his school regarding his diabetes or it's management. I am actually relieved that he is willing to increase the awareness in his immediate setting. Well I figure maybe I can talk about all the stuff I have to do, maybe I'll get a good grade- you know maybe the teacher will have sympathy for me.  My head begins to roll- I am mid lecture about pity and responsiblity in life when I turn to glare increduously at the teen whose main threat to livelihood right now is in fact me and not a faulty pancreas. He's got that same smirk and apparently his dad's same amusement in getting me riled up. You know how I feel about that?? Smirk.

Diabetes is a main part of his life- it affects his sleep, his emotions, it hovers and follows every meal or lack there of- it needs to be considered before exercise- and after, sometimes for days- stress affects it- hormones affect it-food affects it- it is part of him. I wish it wasn't. I wish his life was easier- because I know for sure it doesn't get easier than this. But I feel better that he has come to terms with it and accepted it as part of his life. It is as much a part of him as sports and family and parkour, apparently, which gets a full bullet in the presentation, by the way.  Hey you know that massive rock I scaled at Yosemite? You mean the one that caused this gray hair or this one?  You got a picture right? No, no I did not. I have learned in my 13 years of parenting that any time you hear- hey guys watch this- photographic evidence could probably be used in court for a case of negligent parenting- so no. Aw man- do you at least have one of me ON a big rock. Yes, yes I do. I just leave out the ones of you smacking into it like Peter Parker trying to figure out the whole web slinging thing. I didn't see the final product- I was not allowed- trying to let squirt go- but I am somewhat amused and worried that his plan for a presentation opener is - This is my family and we have an important relationship with Pooh.
I swear to God I almost didn't laugh. Almost.

Lily wanted more guidance- she needed pictures. We sat down Saturday morning and got to it. 4 HOURS later- I printed the last page. So if the point of the assignment was to give parents and children quality time together reminiscing the finer and not so finer times over the past 8 years- we crushed it! If the point was to give parents an idea of how their child views their history- I got it. And the piece de resistance- writing a 100% positive letter to your child about who they are and how much you love them with the tiny requirement of letting them know they should do well in school- well that's the kicker. I can easily be positive. 100% positive. Well I am 100%positive I COULD be 100% positive.  In our uncertain world- what things could I be 100% positive about? I can be 100% positive about my love and pride in Lily- in all of my children. Of all that I've learned over these years of trials and tribulations and temporary normals and new normals- is that I 100% love my children. I am not always 100% happy about their choices or behavior or decisions- but all of those really reflect my not 100% happiness with my own parenting and my own character flaws so I tend to try and go easy on all of us there.

 So when the angelic little monkey asks if it would be Ok to put cancer pictures in her timeline, I am forced again to look at a very painful time in our lives and accept that it is a very real part of who she is. She may not remember the throwing up- she doesn't thankfully- and the hair loss and various side effects and trauma memories have started to disappear for her. I am grateful. I know they left indelible scars on her psyche, but I am somewhat relieved when I hear that she has forgotten yet another major part of that horrific journey. I remember my mom telling us story after story from when we were tiny- so much that when paired with pictures, they have become part of my memory. This is a time I do not feel compelled to remind her. So as we take a trip down that memory lane- I swear to God I almost didn't cry. Almost.

She chose a picture from a time I remember vividly. A time when the Iv's came home with us and she had yet to get a G-tube and I could just see her little body wasting away.  In her 3 year old world, she was trying to process the needles the pain and Baby Pooh- a miniature version of her beloved Pooh- got to be the guinea pig. He was poked and injected and taped up and bandaged as we all tried so hard to come to grips with all the Poo that had been dealt to her. She told me she does not remember being in the picture, but she knows how Pooh felt in the picture. She said it showed her scars and her tubes and she had no hair. That's what she remembers. I hope someday that's all she remembers or merely the memories of us telling her about it.  We finally moved on to firsts- walking- riding a bike and all the dances and sports she has done since. It still feels like cancer takes up more space than it should. Yet it takes up space and it will continue to do so- I cannot gloss over it just because I wish it were different. In the infinite wisdom of youth- my children- even though it doesn't make me 100% happy-often remind me of the important truths in life. You are who you are. Cancer is a part of us. Only some of the scars are visible. It's ok to cover them up and it's ok to let people in to know that our journey has been tough and no, we aren't remotely "in remission".  It is part of who we are. It doesn't make us who we are- we become who we are in spite of it. So I sat down, tissue at the ready to write her an age appropriate- 100% positive letter. The part I was dreading was actually the easiest. Funny how that happens.
And in the end- I realized what the Freshman said in the beginning- This is my family and we DO have an important relationship with Pooh. We just work around that.

Wednesday, August 7, 2013

The policy of being Human

I am optimistically pessimistic. It really is disappointing that when people behave badly, it rarely surprises me- but when they are kind and considerate- it generally catches me off guard. People tell me all the time, they have no idea how I do it. I translate that into- not a compliment of reverence and respect for the chaos that is my life but rather an exhaled commentary of relief that they can't fathom some of the stuff I put up with.

We dove into this school year, not really having any medical policies in place for Phillip or Lily. I wasn't concerned so much about Lily because she is at a school that is familiar, the health aide knows her all too well and they know us as a family. Phillip is now at high school- which is a huge campus with lots of different kids and teachers and they neither know him or of his diabetes. It may be reckless, but I'm kind of letting him revel in the anonymity. I'm giving squirt the room to fly solo and see what he does. After all- last year I had all the paperwork in by July and thought a plan was in place and emailed every one of his teachers(heard back from 1), placed multiple emergency boxes in various classrooms around the school and found out in December that they were going over his "plan" in January. I think experience in the system has given me a better picture of what my expectations are and in what way I need to invest my time to keep my kids safe. One option is following them around to every class- another option is teaching them to manage their conditions independently.

I don't know if you've ever met someone whose identity becomes encapsulated in their condition. They let themselves be defined by it. At times it is absolutely unavoidable as many conditions tend to take over a person's quality of life.  As a person who spends a lot of time reflecting on Li Fraumeni Syndrome and cancer- I am always cautious about letting it rule my existence more than it needs to. It is an inseparable part of us- so we can't disavow it without amputating that part- and unfortunately many of us have amputated bits and pieces trying to distance ourselves as much as possible from the beast. But it is a choice- how much it is allowed into every day life. That shapes how I interact with people because I know how much their view of what we've been through changes how they treat us. I know first hand that many people with the worst scars- have learned to hide them so well- you will only see them when they want you to.  I actually have come to appreciate the look of shock when people find out my history- it means I am a better actress than I think and manage to play the harried normal mom role pretty well. Every now and again I get to be the person surprised- and I also appreciate the hell out of it- because I know the effort it takes to put pain aside and keep going and I respect when I get a glimpse of someone else who has done it for years.

Lily's Counselor was on extended leave last year. Since counselors at schools wear many hats, her absence did concern me since she is the go between for our emergency plans and all the technical paperwork ensuring Lily has a safe learning environment despite her condition. I was dreading having to waste another hour of my time going over a technical document.  Last year we also gained a new principle- which left a hole in my emergency plan- as the former principle promised me that if Lily ever needed the injection- she personally would see to it. A complete 180' from our horrific experience at Keoneula Elementary. So this year, the other counselor called to schedule a meeting so he could become familiar with Lily's case. He knew Kiera and was extremely apologetic that he had no idea of Lily's condition or needs before now. I didn't expect him to and I was full aware that our counselor was out- I knew I could go to him if needed- but I also knew he was filling the role of 2 counselors- there are many kids with a variety of needs- I triaged Lily. He also let me know that the vice Principle was no longer at the school and Lily had a teacher who was new to the school. So far this year we are 1 for 5- thankfully the health aide is still here and amazing! 

I did what I do every year. I opened up the adrenal insufficiency file on my computer and printed out the multiple documents I've saved over the years that explain adrenal insufficiency, it's symptoms and treatment. I print it out every year and give it to Lily's teacher along with an emergency management page with her photo- our numbers, the doctor's numbers and when to call us or 911. I make extra copies for all the new folks who will be in the meeting. My view these days is that my job is just to make them aware of her condition- they will be the ones who will be my greatest assets if she gets sick or injured. I do not expect anyone in the educational field to provide my child medical care-their job is to educate- if they wanted to be in the medical field they wouldn't be at school. I do expect that they let me know if something seems off.  Her teacher called me the first day and we had a lengthy chat about everything. She is a wonderful, compassionate person and assured me that she would do everything in her power to make sure Lily was safe at school. That's really all I ever wanted. I know there are no guarantees- kids get sick, kids get hurt. As her mom, all I want is to be heard and feel comfortable that someone has it on their radar that Lily has a special medical need in an emergency.

The meeting went how I expected my very first meeting to go. The differences were many from how that first awful meeting went. I walked into it with the expectation that this was an opportunity for me to create awareness while filling out documents that were a formality - they were so someone up the chain could check off boxes that say I am comfortable with the plan. The policy itself will not provide me that room for comfort, but I am not one to split hairs unless provoked. I also have learned that reasonable people are guided by something greater than policy- which is what Lily's case needs. A rare condition such as adrenal insufficiency- should not be a subsection in any school health policy- it doesn't affect enough kids. Policy does however need to provide space for case by case accomodations with such rare conditions as adrenal insufficiency-in the past it has not done this.

Yet this meeting was different because everyone knew Lily and obviously cared about her welfare. That alone means more to me than a policy demanding someone give her a shot in an emergency. To me- when you care about something or someone- your actions whether perfect or flawed are much more pure than if you are person acting only because bound by policy. It is the basis of human nature and it can be evil and ugly or pure and magical. I will rest better at night knowing that Lily is in a safe environment. Safety is not guaranteed- it may be a bumpy ride- but I know that those around her are caring, decent people and that means more to me than a document.

As we talked, mostly off record - Lily's counselor mentioned he also had high frequency hearing loss and had cancer as a child. I noticed years ago that he had hearing aids- but I had no idea why. He told me that his hearing loss was due to radiation treatments which then I had to ask where his cancer had been. He had a grade 3 astrocytoma when he was 13. Now it was my turn to be shocked. In a school that we have been in for years- I've seen and passed this man more times than I can count. We say hi casually- but in this moment we are connected again by a horrible disease. This is the moment that is hard-do I mention that both my brother and dad had the same horrible brain tumor- yet somehow the look of shock must have been on my face. So I tell him, he says gently that he wasn't supposed to live past 6 months either. We are connected because the little girl we are here talking about was given a poor prognosis- and before me is a survivor - another sign, another reminder that the human body and spirit are amazing and the possibilities are endless. Sometimes the reminders are right there in front of you if you only take pause to see them. The reminders are human, the connections are real and without them there is nothing left but meaningless documents. So I for one was very grateful that my time was not wasted on checking a box or creating policy, but in getting to know another person who shares this crazy journey and can knowingly travel it beside my daughter. I am hopeful.

Sunday, August 4, 2013

Finding Paradise

Planning doesn't work out for us and mainland trips. After moving here- we heard it a lot- but why would you ever want to leave paradise?

Definition of vacation: a period of suspension of work, study, or other activity, usually used for rest, recreation, or travel; recess or holiday.

Definition of Paradise: 
heaven, as the final abode of the righteous.
an intermediate place for the departed souls of the righteous awaiting resurrection.
( often initial capital letter ) Eden (  def 1 ) .
a place of extreme beauty, delight, or happiness.
a state of supreme happiness; bliss.
After almost 8 years of living in paradise, I sometimes feel like a character in Lost- running around trying to find my way home while others keep telling me the island doesn't want me to leave. The first time I tried to leave for vacation- Lily was diagnosed with cancer.  While we were planning her Make A Wish trip- it was excruciating hitting the ups and downs of chemo and adrenal insufficiency- I felt like we were baiting the Gods into showing their fury for us trying to do anything restful, recreational or happy. For the year  she endured cancer and treatment- this place did not feel like home, heaven, supreme happiness or beautiful. It did however feel like we were hovering on the precipice to the intermediate place for departing souls- so I guess in that respect- we had our paradise.

Cancer robs you of any ability to plan while occupying almost every vacant space on your calendar.  But after a year of Phil working 3 jobs- my recovering from my own dance with the cancer beast while trying to find yet another new normal and prepare for the eventuality that no one gets out alive. I was not feeling the paradasical love- we needed a vacation from our paradise. We try to harness a couple days here and there throughout the year for staycations- and during those times we too appreciate the beauty of the island that we call home. But most other days- its gridlock for 2 hours added to the husband's 14 hour day while I try to balance the health, house, school and activities- without the added challenges of rain, snow, or any of those pesky seasonal changes. 

So a few weeks ago, while enjoying our little plot of paradise and several beverages- Phil chomped on that proverbial bullet and bought 6 plane tickets to California. Seize the vacation my friend. Former Jen would research hotels, activities, sights and attractions. She would spend hours upon hours devising the most efficient and jam packed itinerary. For when you live in paradise- a vacation from beaches and relaxing is traveling and seeing and doing. I was exhausted and fearful to even think about the possibility of getting away- after all- I had I litany of scans ahead of my little family. With one swipe of the ipad- the husband had baited the gods of fate- I was left to wait and see which form retribution would take this time. 

Yet the scans came and went. No repurcussions. My check up was anticlimactic. I felt for sure the plane would crash. It's a strange place that cancer aftermath puts you in. Especially living with a hereditary cancer syndrome. Everyone expects that once you are out of treatment- you are "done." But you are constantly waiting for the other tumor suppressor to drop. As much as I try to be positive- every aspect of life become prioritized- work gatherings take second place to family time- as they should. My support system wanes and I realize it is my fault- but I trade the frivolous social time for quality mutant time. I see the changes in Phil too- he's lived the cancer beast several times now- he too wears the invisible scars. I don't plan. I try and then when it implodes- I scramble. SO in the effort of efficiency- cut out the planning. Some call it spontaneity- for us it becomes a way of life. 

Phil did most of the planning- I submitted a wish list and some input- as my research skills are still superior. What forms is a rough outline- really just a choose your adventure chapter- a flow chart for all of the inevitable roadblocks that will pop up. I didn't even clean the house or finish the laundry before we left. That was my offering to the gods of fate- maybe if they let me have this vacation- I could deal with mouldy laundry and bugs when I returned.  
Our vacation in all respects was a success. It was a jam packed itinerary in every regard. We travelled- we drove over 1000 miles in about 4 days. We walked, we hiked, we saw, we experienced. We vacated.
We saw a friend in the Crossfit Games, 
Walked along a pier.

Bella declared Hollywood busy and crowded with lots of people buying and selling stuff.

 We rode rides on the Boardwalk in Santa Cruz.

 We sampled some grapes and some olives.

 Met our new cousin and got some good squeezes in on his brother. 

Met a fellow mutant.
and another fellow mutant. 
We walked on the Golden Gate Bridge.
We hiked around Yosemite. 
And we ended up at one of the Happiest Places on Earth. 
Our final dinner of vacation was with new friends who felt like old friends- who share this crazy adventure in genetic cancer mayhem. I watched my my husband chat with someone who could relate to his journey. I think it healed a small bit of his soul.  We watched 2 little girls who have battled cancer and although they did not even share the same language- communicate and relate in a way more humans should- in a way that only souls tortured by disease could understand. As adults, we watched and smiled and wondered if they had an idea why they were drawn to each other- or if they just were being kids. Either way, it was a bit of paradise. 

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)