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.

Paddle to Normal Island

I have been feeling better lately. There has been a slight edge taken off the tension that I feel as I go through the days. The shift happened a few weeks ago when we packed our little family into the car at 3:30 in the morning and went on what would prove to be an epic adventure, we were headed to normal island. Jared was going to participate in the Paddle for Sorel and we were going for the party. We were going to be with our tribe, where everyone is like us. The event was starting at a beach that was about 4 and a half hours from our home so we got an early start to the day. With a big jar full of iced coffee and some loud music on my headphones we made great time, it helped that Claire didn't stop breathing (last time we did this I couldn't say that, so it's a big deal, you can read about that here) and everyone slept the first few hours. The rest of the day is a bit of a blur. Since we got there early we went to our friends house where we met up with our other friends who had a long journey to get there...from England, with twin 3 year olds, it was like Christmas, seeing family that we had longed to be with, I was giddy with excitement. With the boys all ready to paddle we headed to the beach to send them off.

 There was this strange, dramatic sense of awesomenss watching all of the paddlers take off from the beach, they were all so pumped to be doing this for the girls, there was so much love, so much passion, it took my breath away. Once they were out of sight we headed over to the other beach to meet up with the other families and wait for the arrival of all of the paddlers. I sat in the sand with Claire and our new little friend Olive who I was so excited to spend time with as I have fallen in love with her reading her blog. Chloe somehow got soaked head to toe in her clothes so she ended up running around in a tshirt which she thought was the fanciest dress ever. After more fun in the sun than could be imagined the party continued to the house of the friends we were staying with. There was so much chaos and crazy but it was so fun and calm, it really was like heaven. Slowly people left and we were down to our family, our lovely host friends and another family that we love dearly that was in town for the paddle too. All added, there were 3 four year olds, 3 seven year olds with Rett syndrome and 6 parents who were had questionable amounts of sanity. It sounds like a recipe for disaster but it was magical, the sibling playing, the girls hanging out and the parents unwinding. We slowly got up, hit the pool for a bit and eventually had to head home. It was only 36 hours but it felt like so much more. We crammed more laughing, crying, hugging and chaos into it than most experience in a month. As we headed home that feeling of isolation was gone, we weren't wandering around in crazyland by ourselves, there are so many out there on the journey with us. So when Chloe puked all over me in the middle of the gas station on our way home it really didn't phase me, I just took my shirt off and put a new one on, because that's what you do when you are covered in puke, you change your shirt. Lesson learned, when you are feeling alone, head to normal island, it's out there.

Regrets

I don't remember much from when Claire was a baby. It was a pretty chaotic period in my life. If I strain to think I remember her giggles when she naked crawled lightening fast after a bath. I know that she used her hands, we have pictures of her drinking from a cup on her own. I remember a few things but not much. I know that I was sick and Jared and I were in separate states for a long period during the last few months of her 'typically developing' time and that is what I remember the most. Laying on the couch with a fever, watching her play with her toys. As the story goes, slowly that all changed. I have a lot of regrets about that time, I wish that I had been more present and that I had made choices that spread me less thin but there is no going back. Fast forward to last week. The highs were so high, the lows so low. Claire slipped into a scary cycle of seizures and sadness that left my mind reeling. Was this the new normal? Can she sense something about her body that I can't tell? Is she alright? Will she loose her ability to chew and need a tube? Will she wake up in the morning? After two long days in that world, on Friday morning she woke up and was back to her lovely, wonderful self. I lingered at the drop off for school, I kept talking to her, watching for her to smile appropriately and raise her eyebrows to express her annoyance with me not leaving. Of coarse she did, but I hesitated, it was hard to leave. I worried that I would come back to pick her up and she would be asleep, unable to hold her head up after a bout of seizures. Since then she has continued to be herself and I have tried to soak it in as much as I can. I caught myself taking a ridiculous number of pictures of her today as she smiled that smile that said so clearly that everything was right in the world. She's fast, it's hard to catch with a camera but will knock you off your feet if you are with her. I wanted to get a picture of it so badly because I didn't know when or if I would see it again. I am self aware enough to know that this ins't good thinking, that and the chest pains I had were a sure fire indicator that stress levels were too high. I called a friend who is on the other side, she knows what it is like to not be able to see that smile again. Her sons life was taken too soon from brain cancer. I told her of my fear, how I try to my the most out of every good moment, how I don't want to miss a thing. Her response was perfect, it set me free. The short version of what she explained is that if Claire dies I will be so torn that it won't matter, there's nothing that can be done today that can ease the pain and that I am doing a good job today. It was such a good reminder, today is all that I have. I know that Claire wants to be average more than anything, which might even mean her mom forgetting stuff and missing some details because that is what life is made of, not just the big smiles at the beach. There is no amount of extra hugs or special moments that will change that reality if that day ever comes. The best that I can do is to simply be, happy, sad or indifferent, it isn't time wasted, it's time spent honestly.

Made a Wish

Claire had a pretty hard time being 4. Just as her sister started to do all of the things that she had lost, the trial for her eye gaze computer ended and she lost her voice for the 4+ months that it took to get insurance approval. Our doctor suggested it was a good time for a Make A Wish to get Claire through so that is what we did. Claire wished to meet Ariel, her kindred spirit that can't speak and has wobbly legs. You can read about that adventure here. Fast forward a few years, Chloe is super into the princesses and loves to look at the pictures of her sister with them. She has heard us tell people about Claire's wish and the fun she had meeting Ariel. So I shouldn't have been surprised when Chloe announced that she was ready for her Make A Wish trip. I explained that it was only for kids who had to go to the doctors a lot to which she replied, "I go to the doctors a lot." I couldn't argue with that logic. I explained that mommy and daddy would have to pay for her trip so it would take us a while to save up. For months she asked every day if we had saved enough money yet. When we were out and she wanted things she constantly heard that she couldn't have it because we were saving for Disneyland. So I wasn't really shocked to her response when we finally told her it was time to go. "You have enough money! Hooray!" Like most things on the typical side of our life it was all pretty amazing. Chloe anxiously gathered up everything she needed; her Belle dress, her blankie and an Ariel doll. The drive down was easy thanks to the ipad and some Tinker Bell movies.

 We arrived shortly after my parents and headed out to Downtown Disney for a little shopping. Chloe thought she was in heaven. It was obvious we don't get out much as she was star stuck as the shopping center alone. Both the girls were in heaven in the huge Disney store, if I had known that I wouldn't have bothered with admission to the park.

 After shopping we celebrated Chloe's 4th birthday at Goofy's Kitchen, it was so much fun. Chloe wasn't super excited about the 'creepy' characters but she was pumped for the peanut butter and jelly pizza and copious amounts of fresh fruit.

 Somehow Chloe had a hard time falling asleep after all the excitement so we let her sneak out of bed to watch the fireworks with us from the balcony. As great as the fireworks were it was breathtaking to watch her enjoy them, to remark about the colors and shapes and see her jump out of her skin when she saw Tinker Bell fly around the castle. That's the stuff that can't be taken for granted and Jared and I soaked up each minute of it.

 This was one of my favorite moments. It was 8am on Mother's Day and I had two smiling, happy children that were excited for a day of fun. Not going to lie, it was a huge stroke to my ego ;-)

The first order of business in the wish making process was to go see the fairy godmother in training.

 Then all that was left to do was enjoy the magic and watch her soak it in for the first time.

 It sure helped that Claire was having a blast too. She loved all the fun and extra loving she got from her daddy.

 Pixie Hollow was pretty much a dream come true for Chloe, she was star struck by Tink.

 Claire and I almost went on Splash Mountain but she got so excited she stopped breathing as we got in line, as she recovered Chloe was there being the compassionate little superhuman that she is.

 While Claire slept off the crazy we managed to have fun waiting for the parade.

 Chloe was beyond excited, she named off every character as they danced by us, the anticipation as the princesses got closer was almost more that she could handle.

 After all the fun she was eager to get back to the hotel and so were we, all that was exhausting.

 Day two we did California Adventures with our friends, friends that we had never met before, that's normal right? I met Laurie in New Orleans when I crashed dinner that some of our mutual friends were at. We discovered that our little seemed a lot alike and I have dreamed of getting them together ever since then. So glad we did, it was so much fun and Chloe and Claire have new friends for life. 

 While we waited for them to arrive Jared and I took turns going on California Screamin' the fast roller coaster. Yes, at 9 am I made my children wait in the shade while we rode the roller coaster and it was the best decision. It was eerie how relaxing it was to be thrust upside down, a good reminder at how crazy my world is, I have to go upside really fast to come down from the stress of my life, that might be something I work on in the future.

 All of the girls had fun with the princesses at Ariel's Grotto and we enjoyed being inside and having food served.

 Once it cooled down we went for a few rides and had a ton of fun with our new friends.

 That night the girls cuddled up under the magical fireworks on the wall and quickly drifted off to dream land. Mission accomplished, we had made Chloe's wish come true.

 Before we left we managed to get a little swimming in and by swimming I mean jumping.

 We had breakfast with some friends, Chloe made a great cup of tea for Claire and the Mad Hatter.

 

Like that it was time to go. So glad we went, it was exhausting but worth it!

 But it was also good to be home.