Second Grader

Toe has entered the second grade. We met with Toe's teacher to discuss his CF needs, we went to the Orientation, and now he's off to school. Toe is starting week 3 and seems to be having a good time. As most kids at the beginning of the school year, he comes home tired and cranky, but with good stories.

Here's one: On the early release day last week, after recess, Toe's class went to Music. Toe somehow thought it was the end of the day and gathered up his things and went to sit in the lobby where I pick him up. He sat there for a few minutes (and had begun to wonder why he didn't see any other kids getting ready for the end of the day, or parents for that matter) when one of the secretaries said to him, "Toe what are you doing there?" After a long pause he replied, "I don't really know..." They sent him back upstairs and he joined his class in Music.

The good news is he wasn't even remotely traumatized by this. He thought it was a hilarious mistake (I'm waiting to see if he repeats it this week).

Here's his classroom from his view (Orientation Day):

His teacher - Mr. M

Oh the paperwork!

View from Toe's desk

Dad with supplies!

Classroom decoration

The hallway - with Toe's cubby

Transitions

Part of the reason for my anxiety/depression this summer was that we were facing a big change. J has worked at at the aquarium for eighteen years (more if you count the years he worked there in late high school/ early college). It can be consuming work: you are on-call if things break down or there are power outages, days off change depending on frozen fish shipments or stranded marine life. J has always taken the care of the animals very seriously and has not just loved, but has been passionate about his job. I worked there for a few years. My sister worked there. My mother worked there.... The boss, our manager, is like a big brother to us.

The last few years, Jason has begun to feel the full force of the physical nature of his job. He spent hours cold, wet, and sore lifting heavy objects. And we have had to face the real possibility that as the years progress and Toe's CF progresses, we may need to live closer to the city and our CF clinic. We'd been thinking about these issues, but had not come to any kind of conclusions....

Then this summer, a friend offered J a job. He would be working from home, providing technical and customer support for an online company. The conditions were pretty ideal. Even though it was really a job J couldn't refuse, it took him a lot of time and soul searching to make the decision.  I was definitely part of this process, but also knew the decision was ultimately up to J.

And so we move to a new chapter of our lives. J started the new job mid-August and  left the aquarium after Labor Day.  He loves working from home and finds this new job varied and exciting. He is working an early shift, so Toe and I actually get to see him in the evenings.  For now, we will stay in the same location (we just bought a house a year and a half ago), but we could move if we needed to. If Toe has a hospital stay, J will be able to join us. There is room for advancement and skill-building in J's new position.

And we will always have the aquarium in our hearts. It was an amazing eighteen years with stories that will astound Toe when he is older....

Eat My Words (yet AGAIN).

Texas in August? YES.

 Remember that post I made earlier this summer about how Toe was too sensitive to heat for us to go anywhere in the summer? I should learn not to make any definitive statements ever, because they always come back to bite me. I have to say, this was a pretty pleasant bite.

I have fantastic in-laws. J's mom suggested that Toe and I take some time at the beach in Texas and the more I thought about it, the more it seemed like a great idea: I'd get a break, Toe would get to with Grandma Gus and Grandpa Boat, and J's folks would get extra time with their grandson. After some discussions back and forth, we decided to try it. Toe was ready to go as soon as we suggested it.

The weekend before we were supposed to travel, Toe got sick, and we had to postpone our trip for a week. His fever abated two days before we left. We wore masks on the plane for protection (Toe wanted me to wear one too. I actually felt healthier after having done so...), which got us some strange looks; it ended up working  extremely well - first airline trip where Toe has not ended with a CF exacerbation.

Traveling with a seven year old is a joy. At least this seven year old. He is just the right age to experience the wonder of air travel - ordering a drink on the plane, the sound of rolling luggage on tile, riding escalators. When we met chaos at the Dallas Airport (the escalators, people movers, and trams were all broken so we had to walk miles with hundreds of other people), Toe managed to keep up with me and help with the luggage. We arrived in Corpus Christi, Texas in the evening, tired, but happy. He ran into his grandmother's arms.

We stayed indoors during the days and in the early evening, as things cooled off, we headed for the beach. The weather was perfect - 90's but always a breeze, with WARM water. We went to beaches that allowed cars so we could choose a spot, unload the truck, and have a picnic dinner. This was a typical set up (including the pelicans):

There is something so magical about being at the beach without being cold....

As the week progressed, Toe adapted to the heat enough for some quick outings. He and Gus took time to watch the fish in the canals and enjoy her garden.

We also went to an end-of summer fair. Toe was hot but had a great time in the bouncy houses, on a bungee/trampoline system, and his first ride on a pony.

We had an amazing visit and flew back with the grandparents, who had planned a trip to Oregon six months ago. Their time in Oregon allowed Toe to deepen the relationship started in Texas and while they were here, he even spent the night with them (his first night away from both parents)!

I have no idea....

Sometimes I upload photos into various draft posts, give the post a title, and save them so I can write later. I often do batches like that, as my computer time is really limited. Apparently I titled this one "Uneven" I have no idea where I was going with this.

I am guessing it has to do with Toe's and my moods and health this summer. As he recovered and was ready to enjoy the summer, I became sick.

For those of you who don't know, I suffer from depression (and anxiety). I have had a major episode every three to five years since I was twelve. I have taken medication for it for more than ten years and consider myself a "lifer." I work to lower my dosage when things are ok and have to increase my dosage during my depressive episodes. Often the episodes have different symptoms, so it is difficult for me to tell how poorly I am doing until I completely fall apart. It often takes me months (sometimes years) to recover. Sometimes these episodes are triggered by an event - those are actually easier for me to handle because I seem to be gentler on myself when I know the cause of the depression. More often, they come after a long period of stress. I handle the stressful events as they come and fall apart afterwards. I feel guilty that I am not able to take care of myself well enough to avoid the roller coaster and that I am not able to recuperate faster. I know I take everything too seriously.

The last school year was hard. J and I rehearsed and performed in a play, which was amazing, but took time and energy. We did cub scouts. Toe got head lice. Twice. We went to the hospital for Christmas. Toe was sick on and off all spring. The thing I learned about being sick and having head lice is that they are both very isolating. We were stuck in the house without being able to invite friends over or get together with people for support. Our friends and family tried to support us the best they could as I kept saying, "I don't know how much more of this I can take." We had so many times this spring where I had to cancel plans due to illness, I lost count. Toe missed the last two months of school. Every day we thought he'd be able to go back in a couple more days, but illness followed illness. J and I were physically sick too. We all caught the flu and Toe and I ended up with ear infections that needed antibiotics (I went for weeks with temporary hearing loss). And then Toe ended up in the hospital and J had to work, so Toe and I went together.  I missed time at work and had to make it up (I caregive for my my brother, who needs attention as well). More more more....

We had a busy July 4 weekend, followed by my working an overnight respite. I woke up on my birthday, exhausted and empty. I stopped answering the phone and spent most of the day sleeping on the couch while Toe entertained himself with video games and movies. We spent most of the week like that. J has been incredibly busy this summer and we see him for a few minutes in the evenings, but are on our own the rest of the time. And I was DONE. Just done. Done with planned events, done with school and sickness and housework and pretty much everything. All of the energy I  had went into meeting Toe's needs - meals and meds. Some days I can muster more - a trip to my mom's, a trip to the grocery store, a small adventure; others, Toe has to play around me. He has been very understanding and supportive.

I wish I had Sylvia Plath's eloquence to describe how I feel during these times, how it clouds the mind, how there is always a physical component for me as well, how disrupting it is, especially trying to appear normal. But often the first thing to go is my voice. I become so overwhelmed by LIFE, I am unable to even let those around me know how poorly I am doing, let alone write about what I am experiencing. I navigate the days with a voice inside my head dismissing most of my messages to the outside world as "Too much energy to share." Having issues and/or worries? It takes too much energy to voice them. Need help? It takes too much energy to even think about what I need let alone ask for anything. I find all I can say is "I'm sick," and "I'm broken," over and over.

My depressions have been fewer since Toe was born, but they still come. I feel like a sub-human that I can not keep them in check. Now when I am depressed, I drag myself out of bed to take care of Toe and it's probably good for me. I can't completely crumple the way I used to. I have to keep up the appearance of being ok at least sometimes for him (at least I have been able to this thus far). But it's like any emotional process: if you are keeping it in check, it takes longer to process. I was barely recovered (maybe a year? two?)  from my last depression when this one began.

I know they come and go, and that I will recover. I like to think that maybe I am a phoenix on a fast track, born to crash and burn and then rise (even better) from the ashes (not once every thousand, but once every five years). I sure hope so. The idea that I am born to ride this horrible cycle again and again is too depressing and scary.

I have an amazing support network. Family and friends are checking in on me, asking what I  need, and helping me navigate this. I have the most amazing husband and son I could imagine. I will be alright. It seems that I usually fall apart when things are going well, not when they are going badly. I do feel guilty that with all of this support, I can't get it together quickly. I keep thinking that I  will be alright and then I am not. This looks to be a long recovery.

A dear friend came by yesterday and has taken Toe for two evenings in a row. I have forced myself to take a walk and feel so much better having done so. It is so hard when I feel this way to take care of myself the way I know helps me in the long run. It is easier to eat bad-for-me foods and sleep and read my book and that's it.

So why share? To help Toe face his cystic fibrosis, I tell him that we are all suffer from something - diabetes, depression, not enough food to eat, poor vision, depression, something. We all face challenges, sometimes many. Life is messy and painful and hard (and wonderful and amazing). I just finished Glennon Doyle Melton's book Carry On Warrior. She calls life "brutiful." I am inclined to agree. This is who I am and it colors every aspect of my life in the same way that CF colors every aspect of Toe's. We are not our illnesses, but they are there and sometimes you just have to acknowledge the ugly clown standing in the corner. I want to be this amazingly free, wild woman who embraces life. Instead, I am a flawed human being whose anxiety drags her down and closes her off far too much. I am sick. I have been much more sick this summer. When I told my friend this last night, he said, "Just be you." So here I am.

Here are some photos from my walk last night.

Poor Timing/ No! Bad Virus!

In the ER - pre-Motrin

Let me start by saying the visit to the Emergency Room was only because Toe's regular doctor was booked, it was a Friday, and we had plane tickets to fly to Texas on Monday. If it had been a regular week, I would have let it ride. We suspected he had a virus, but just wanted to check in. Because Dr Ram's schedule was full, they sent us to the Emergency Room and Toe went through a variety of tests to rule out viral meningitis, something CF related, or a bacterial infection.

We hadn't given him any ibuprofen because we wanted them to see how he was pre-pain meds. The ER doctor told us that wasn't necessary, he would have trusted us...and then gave him Motrin. We waited until it worked and the doctor had spoken to one of our CF team. He sent us home with a note so we could cancel our flight if we needed to, which turned out to be a good thing because Toe was sick for a full week.

Post-Motrin

Not a fun virus - high fever for a full week, vomiting, swollen lymph nodes. The kid felt so terrible he did not eat anything but a few crackers a day. He lost quite a bit of weight.

The next day...

On Thursday and Friday of the next week, J and I were unsure whether to cancel the plane flight again (set for the next Monday) or not. We decided to wait. Saturday, Toe perked up and did not need meds every minute of the day. Sunday we decided to go ahead and travel. Monday, Toe and I got on the plane for Texas, and although his lymph nodes were still swollen, he seemed fine the entire trip. Thank goodness! We were in Texas for a full week and have just returned. Keeping our fingers crossed that he stays healthy for a while.....

Summer Days

Want to know how the kid has been spending his summer? Here are some adventures..... (he's making banana bread above).

We opted for simple kid stuff this summer. It's the speed we can handle.

Row, row, row....

Mom and I took Toe on out in an inflatable boat on the river the other day. He still needs some work on paddling, but he had a great time.

Mom did too - don't you think?

I think Toe's favorite part was dragging his fingers through the water. I am constantly reminded that I need to slow down and allow Toe to have these simple pleasures (ones that I remember having and enjoying so much as a child).