Moving!

Over the last few weeks I have gotten a little clearer vision for what I want to be writing. As a reselt I have moved to Rettland! I would love it if you can join me over there as the journey continues.

Simple Pleasures

We are solidly back in reality. The well behaved 4 year old that went with us to Arizona is overtired and rather disappointed that the world no longer revolves around her. Jared is playing catch up at work and too tired to talk at the end of the day. Claire's had three appointments and tomorrow we get to go up to LPCH for the scoliosis clinic. I woke up with a terrible headache and nearly passed out after my physical therapy. This is real life, it sorta drives me crazy and at times can be a bit depressing. Laced throughout it there have been a few simple pleasures. We donated a csa box to Kid Quest (Claire's summer home away from home) upon Claire's urging us to do so. The joy on the faces of the staff as they sifted through the heaping bag of veggies was priceless. It was a moment of slowness when everyone in the moment was thankful for the process, the farmer that grew it, the parent who provided it and the staff that will lovingly cook it with the kids for tasty meals that will be enjoyed together. Later in the day Chloe finally earned a few minutes of ipad time and chose to climb into her sisters bed and share it with her. It's nothing life shattering, the world would keep spinning without it but these simple pleasures, sharing things that we enjoy, that's the stuff that heals my spirit when I am surrounded with piles of laundry and fighting off back pain. I can deal with that in a world that's simply awesome like this.

Arizona and back

Since my last post, we have traveled to and from Arizona. We went strong up until the moment we left and hit the ground running once we got home. This might seem obvious to you, but somehow in all of this I have realized that we do a lot of life. It's not busy, it's just not boring. Our life is an adventure, there is nothing mundane in our world. Just going to the grocery store becomes a heroic activity when one child is on the verge of a seizure and the other is trying to do cartwheels in the parking lot. The trip was great but exhausting. I don't know when my brain is going to be functioning again, so I am going to put up pics of the trip. While going for a funeral wasn't fun or anything I ever would have wanted to be doing, we made the most of it because today is what we've got. So here's the story of our adventure to Arizona in pictures.

 Quick AFO adjustment and circus training right before we left.

 Sweetest sisters ever.

 Chloe wanted to make a raisen, it was fun to watch, if you are sitting forever.

 Starbucks baristas were randomly super rude.

 The girls were champs, it was however a very long night.

 Chloe was intrigues by the cactus and wanted to know where the sand was.

We found the sand however, she now thinks that Arizona has the sand of the desert but also lots of grass and bagpipers to bring in the sunset.

We did bring a little slice of home with us.

 I tried to explain that this is where I once worked, they just liked the fountain.

Claire loved lounging by the pool in the warm night.

Eventually we wore Chloe out.

Of course we jumped on the beds.

We also managed a little fun in the awesome pools.

I was very amused that they made fire to roast marshmallows and melt chocolate, pretty sure you can make s'mores there with no fire.

Before we knew it it was time to head home but we really enjoyed our time in the beautiful desert.

Sitting in traffic, not so much.

Now it's back to normal, which is still an adventure. I am really excited to tell you that I have started to move where I am writing, soon there will be a new blog, Adventures in Rettland, details to come!

Today

Funny, I thought I was on the ragged edge of exhaustion and fighting back, forcing myself to rest so I can get back to being somebody who thinks in complete thoughts. Well, after last week I learned that it is possible to function, much, much more exhausted. I knew that I needed to rest going into last week because we had planned for Jared to go back to Arizona on Friday to see his mom who was fighting cancer in the hospital. Monday I was worried as I felt like I was getting sick, my throat was sore and my muscles ached. Then Jared got the call, he needed to get on a plane asap. We immediately changed gears, Jared flew to Arizona and made it to see his mom hours before she passed early Tuesday morning. If you'd like to read about her life please click here. I don't think I have ever cried like I did that night. The sadness was overwhelming, this was a very difficult loss. Still, the days go on. Jared came home, bleary eyed and attempted to go through the motions. Later in the day on Wednesday Claire developed a pnuemonia, secondary to aspirating because of her cold. Her fever spiked, her oxygen stats dropped, we did all the stuff we do when that happens and five days later she has just started to laugh again, her vibrant self is emerging from her tired body. We are preparing to drive to Arizona in 36 hours. Short of reserving a rental car and a hotel room, nothing has been done to prepare for that. I could be freaking out. I could be huddling in the corner, overwhelmed and fearful. But today, on our way home, I drove with the sunroof open, Imagine Dragons blasting, Chloe singing and Claire laughing. I have so much today. So much to enjoy, to savor, to fight for. So with that, I will leave you with this.

Starting

Have you even thrown your name into a hat, without thinking about it much, figuring you won't get picked so it won't matter. I sorta did that. In late June, when I was exhausted and clearly not thinking well, I saw a post on Jon Acuff's blog, something to the effect of; adventurers wanted, 24 people, 24 days, 1 awesome result. There was mention of risk, passports and machete's so of coarse I sent in my info to join, doesn't that sound like what a tired mom needs? Fast forward, I am somehow in this Start Experiment and before groups get assigned I need to pick a risk for the 24 days. I was so depleted that the only thing I could think to risk was figuring out how to restore myself. I didn't think about it long, it's what came to mind and I went with it. Ever since then I have been trying to figure out, why is that a risk? What makes restoring myself dangerous? I've come up with a few hard answers. I want to share it here because I am curious, anybody else ever feel like this? If I am completely honest, I am afraid to rest, restore, have fun because I fear that those around me will think that everything is alright. How can I possibly be rested and having fun in the same day that I hold our 7 year old limp and blue after seizures? The truth is that is my reality. I have to do just that, enjoy one moment and grieve the next, if I stay down I choose missing the good stuff and I am not willing to do that. It doesn't mean I don't need support but I fear that is how it will be taken. The other thing that holds me back is the fear of failing at whatever it is I attempt to restore myself. It happens, grief has a way of striking when I attempt to rest. Regardless, I know I need to do it. I reached a level of exhaustion last week where it no longer became an option. This needs to happen, I know it will be good for me. My favorite part about this is that it's an experiment, you can't fail at an experiment, you learn from it. So here's to what happens in the next 22 days, so far I took a bicycle ride with Chloe and got a red journal.

Scared, the other side of tired

Much to my delight, yesterdays half thought out post primed the pump and it appears that I am able to think in full sentences again. As the clearer thoughts trickled into my brain I realized something, not only am I tired, I am scared. I am scared because I can't figure out how to get untired. I went away to the wine country and came back just as exhausted as when I left. I feel guilty that no amount of rest seems like enough. I told Jared that I was exhausted and needed to be taken care of, nursed back to health and with the most loving and sincere eyes he looked at me, his lack of words said, if only I could. He too is depleted, empty. So we sit together, get takeout and fall into the couch at the end of the day in exhaustion, neither of us have anything to say, there is no tension that fills the space, it's empty. And so I am scared. I don't see the way out right now even though I know it is there, I know we will make it. I know that both Chloe and Claire are doing well by all measures. Claire is healthy by normal standards, which is phenomenal given her genetics. Chloe has imagination and energy that surpasses many of her peers, she lives and loves wholly. That reminds me that even in the exhaustion, we are doing a few things right, but it's not sustainable forever. I wonder, how long can we go like this, how long will this much be required? I know that right now, it is summer, the days are much longer than during the school year. I only have to make it at this insane rate until Sept. 2. I think about all the research that is happening TODAY and how hopeful that looks. If a treatment is coming, I feel like I can run on this little for a few more years, to finish strong. I would gladly finish ragged if there is a medication that Claire could take that made it so she could use her body more. I would love for her to be ready, physically and mentally strong and ready to rehab, which might actually be our reality. On the other hand the treatments that all look so promising could slide sideways, the research could take another 20 years and if that's the case, I don't think I can hang in that long. Either way, I feel better just thinking about that day, the day that there is a treatment. Lucky for me I am at delusional level of tiredness so it's isn't that hard to believe. So I continue to waver between scared, tired and hopeful and I will just tell myself that I'm not bipolar, my life is. I also drink a lot of coffee.

It's no wonder I'm tired

I know this comes as no surprise, but I am still tired, ragged edge of sanity tired. I dropped my cup of coffee, completely full, for no reason other than I let go tired. All sorts of little things have been slipping through the cracks. I missed a deadline to file some important papers for Claire's insurance. Claire's new shoes bruised her toes and it didn't occur to me that is why she cried when she walked for three days, it was her pt that figured it out. I carried Claire down three flights of stairs to get from our car to our home only to remember that we moved in because of the elevator, that was so perfectly right next to my car. I am just not thinking well right now, I am not feeling either. It is a little scary to feel so numb, maybe this is my attempt at looking over what we've done and seeing why I am so depleted. I can't articulate well the highs and lows, so I will share a few pictures and a video clip of something that is very exciting to be working on.

We enjoyed the aquarium and ran into a favorite friend.

 I parked with a nice view while Claire slept off some crazy brainstorms.

Of coarse, when she came back a few days later she was more fabulous than ever. 

We enjoyed a few decadent mornings before Claire worked on her walking and standing.

We took the girls to Monsters U, which they loved.

We tried to wear Chloe out on her scooter, to no avail.

Jared and I got out for 2 hours, the first time in months!

We met up with Claire's friend from school at the aquarium, first real play date was lots of fun!

We celebrated the 4th of July with a parade and fireworks.

One of my oldest friends came up to visit. We headed up to Sonoma for a little child free space.

Chloe has started to climb trees.

And Claire has started to work on this...

There's been a lot of highs and lows, now to figure out how to get rest :-)

My thoughts on awkwardness

I remember what it was like, I can recall not knowing what to do or say when I was faced with something different. It doesn't have to be awkward. You don't have to pity me. Sure it might be obvious that I am beyond exhausted as I struggle to smile in line at the coffee shop. While I sit and spoon feed my 7 year old daughter you might see how different she is and maybe feel bad about that, perhaps you feel a slight twinge of guilt about the small things you take for granted. There is another option, aside from the fanged pity smile you fake as you try not to look. You could smile confidently at me like you do the other moms out with their children. If your kids have a question, let them ask, it is normal to wonder about things that are different and I have a lot of good answers for you. If you feel like you are staring, compliment my daughter on her cool wheel chair or her fancy shoes. Remember that just because our life is obviously difficult, it doesn't mean that we aren't trying to make the most of it.

Fatherhood

I was thrilled that when I asked Captain Awesome to write a guest post for Father's Day he gladly accepted. He writes often but I rarely get to read his thoughts, so this is pretty special. It's a big task to write something with a vague sense of a theme of father, have an hour and a half to do it and get an overtired 4 year old to sleep at the same time, but he did it, hence why we call him Captain Awesome. So here are his thoughts, I hope that you enjoy them.

Father: Noun. 1. A man in relation to his natural child or children; 2. an important figure in the origin and early history of something; 3.a man who gives care and protection

Fatherhood.  It’s one of the most important things I’ll do with the years that I have on this Earth. If I’m honest, it’s the thing I was least prepared for when I became one.  In fact, if I’m really being honest, (and I feel I should be because this is Colleen’s blog and that’s what she is) it challenges me on a daily basis to the core of who I am as a person and as a man.  Oxford defines a father in three distinct parts.  The first part is obvious and easy.  Claire and Chloe are my ‘offspring’ and it does provide a physical, tangible connection between them and me. I believe that all too often in today’s culture, that is where it stops.  Father’s have become a sort of jester in the family that exists solely for the purpose of being the pseudo-bread-winner and live-in fix-it guy that gives comic relief from their complete ineptness at anything relational.  This greatly damages the perception of fathers.  This perception keeps the substance of fatherhood at a superficial level, that the first part of the definition refers to.

But fatherhood is more than that.

The second part of the definition states that we are “an important figure in the origin and early history of something”.  Although I have a feeling the editors were referring to something other than our roles as fathers to our children, this can also be applied to the role of fatherhood as aptly as the first part of the definition.  What is more important than the origin and early history of another human being?  At least once a year I read a book called ‘Strong Fathers, Strong Daughters’ by Meg Meeker.  I read it because it scares the hell out of me.  The impact that I, Jared English, have on the outcome of the rest of another life is almost impossible to quantify.  The gravity of it is so sobering that there are times that I feel that I can’t possibly ever have enough to give. My short time with Claire and Chloe will have a profound impact on almost every facet of the rest of their lives, and that’s worth remembering as I relate to them on a daily hourly minute-by-minute basis.

The last part of the definition is the one I think I struggle with most, especially with Claire.You see, Claire is very special and there is NOTHING I can do to protect her from the thing that ravages her body on a daily basis.  As she turns blue from lack of oxygen and passes out only to come-to with a full-blown seizure, I AM POWERLESS.  As men it’s true that we do have an inclination to want to fix things, but I can’t fix this. 

While each part of this definition of father is true, I don’t believe it is complete.  These are merely aspects of our role that we tend to get caught-up on.  The reality of the situation is that I, along with all fathers, are not called specifically just to be a good influence or focus on care and protection, because we can’t all the time.

We are called to love well.  Not influence.  Not protect.  Not fix.  LOVE.

And loving well is something that I know I can do, broken as I am.

My own path in fatherhood has been a gnarly one and challenging beyond what I could have possibly imagined.  If we as father’s can love our children well then we will be able to truly be the father’s we are called to be and what our families need us to be.

Jared I am so proud of you, the girls are lucky to have you and since we are being honest, so am I. We love you.

Summertime Blues

Today is the last day of school, the last day Claire will be in 1st grade. There is a buzz in the air. For a while now I have been hearing people say how glad they are to have the school year over with and how ready everyone is for summer. I am not. I have been dreading this day. It's a pretty horrible feeling, as a stay at home mom, to not be looking forward to summer, particularly when so many view it with such anticipation. I am still tired from the last week, month, summer, year or seven for that matter. The thing is, Claire's needs don't change with summer, it just means that I get to do more of it. I get feed her more, take her to the bathroom more, hold her when she's purple more. I know that with that I also get great quality time with her, I will get more of those beautiful smiles that I get to keep just to myself. I do love our special mom daughter time but you can't do that every day. Claire needs to play like a 7 year old girl plays and the bad news is, I am not a 7 year old girl, I don't really have any idea what they do nor do I really want to try and pretend. I am sure I can fill up a lot of the time with painting nails, combing her hair and reading, we might watch some movies go to a bunch of doctor and therapy appointments. We will eat at Verve and take walks along the cliffs and I know that I won't hate every moment of it, hopefully Claire will enjoy it a little. It's just one of those seasons when our life is more blatantly different, as if you had noticed yet ;-) I won't be sending Claire to camp or listening to her read to herself in her bed. She won't be sleeping in and lounging around because she has to get up and get her seizure meds in so she continues to breathe. I know that this isn't all that summer has in store, our days are often filled with things unexpected and sometimes that works out wonderfully. Take today for example, we are going out to lunch with some of Claire's first grade friends after school, she could have a seizure from excitement or we could have the best time ever and I will cry watching her laugh with her friends. I know that the summer will have ups and down, I'm just a little down today, looking at the enormity of what lays ahead but I am not hell bent on staying down, trying to stay open, going with whatever way life blows us.

Update: I just wanted to add to this post that lunch went great. It was about as average as our life gets, Claire was bored for a few but also laughed and played with her friends. Chloe was awkward and shy around everyone because they were strangers to her. Much to my surprise and delight, none of us cried. Today also went well. Claire and I had a great time in the sunshine while Chloe was at school. We wrapped up the day with bubbles on the porch before dinner. It was an incredible gift to have two days with nothing traumatic. Maybe summer won't be so bad after all.