Awesomeness and expletives

I've been thinking a lot lately about the contrast between light and dark. I see it in the comedy and tragedy masks that hang on the wall. I see how the sun lights up a tree that was once in a shadow only to reveal amazing detail and life. Darkness and light need each other, they give each other context. Much like joy and pain work in some sort of bizarre harmony to create moments that inspire and are full of awe, like how compassionate Chloe is as she holds the oxygen mask on her sisters face and gently wipes her hair away from her eyes. I tell myself that it is those moments that life is at it's purest and have been trying to convince myself that those are moments of beauty, but I can't. I am angry, so mad that all I want to do is swear. Perhaps somebody walking by watching me just swear out into space would think that I have Tourette's, oh the irony. Can I back up and tell you why I am so over the top filled with rage? Over the course of the previous week Claire had made some very big gains in her physical therapy. It was in that excitement that I realized that I had in fact given up hope that she would walk on her own one day and while the progress was promising, I doubted. On top of that, Saturday night, while I was on duty, Claire puked all over herself and I didn't hear it and run to her aide. Then Sunday morning she had a huge seizure and there was nothing that I could do other than hold her while she lay catatonic. All of it worked together to throw me into a spiraling depression on Monday. By the end of the day I knew that I had to fight it, that I couldn't give in, that things would ease. So I told the girls we could have a dance party. My heart filled with joy as I watched Chloe twirl Claire around the room, both of them smiling and giggling. I was back, I had fight, Claire's smile reminded me of the thousand reasons why we don't give up. We all sat together to watch the video and that's when it happened, again. Before I could ask for help Chloe ran for the oxygen tank, Claire turned a deep shade of purple and my heart plunged. I grieved the rest of the day and hoped that somehow, Tuesday would be better and sure enough, it was. I spent time in the sunshine, took care of some business and picked up a happy and very regulated Claire who went on to do more amazing things at physical therapy. However, before we were two minutes out of the parking lot, the brain storms hit again, I flew into the gas station and started to help her breathe once more and as I type this, she is still laying still, recovering. There are so many things to be mad about it is hard to pick what I hate the most, the part that she has Rett Syndrome, the part that we are still working on walking or the part that these blasted brainstorms are something she needs. I've learned enough to know that this is how she learns, how she grows. I know in my head that she is making new connections that will serve her well, I know that this is a sign that she is growing and getting stronger both mentally and physically and who wouldn't want that for there kid? Maybe me? I know I don't have the choice, but I wonder if it is worth it. If learning new things means playing with fire in the form of brianstorms that shake her and rob her of the ability to breathe, is it worth it? I don't know and it doesn't matter much what I think, Claire wants it. She wants to learn, she longs to walk on her own, she loves to learn in school and she knows the price that is paid for fun and learning. The reality is that this is our life, Claire will continue to surprise us with her success and scare us with her vulnerability often in the same moments. Hopefully I won't be this angry through it all, I am sure I will cycle through the other stages of grief with some sort of regularity. If you happen to bump into me somewhere and ask how I am doing, don't be surprised when my answer is "Fucking awesome" I'm not trying to be a jerk, it's just the only thing I can come up with to describe my truly wonderful and screwed-up-beyond-belief life.


The Power of Friends

For a while I tried to avoid contact with little girls Claire's age at all cost, it was just too painful. As time went on it was clear that Claire wanted nothing more than to be around that very demographic. It was always awkaward. All of the parents over on the side talking, me the only adult in the mix of small girls, trying not to cry as I struggled to help Claire to play with her peers. Over time we attempted a few birthday parties that she was invited to. The only party we attended last year resulted in Claire silently sobbing as we left, it was then that I realized that she was more of a classroom pet than a peer. This year seems different. I get positive reports from her aide about the fun she has with her friends. We attempted one birthday party and the kids did say hi to Claire but I didn't know how to involve her. She kindly faked going to sleep and we left early, it felt like we were going in the right direction. A few days later Claire got yet another invitation to a birthday party and from what I could gather, this was one of the girls that Claire enjoyed the most. After our amazing time at the beach and our run up the stairs we went to the store to pick out a gift. Claire was so excited as we settled on some nail polish and lip gloss colors that she briefly stopped breathing and stiffened, an unfortunate side effect of joy. We quickly left and I didn't mention the party any more for fear of hyping it up too much. Saturday was fairly calm until Claire finally got all of the excitement out in the form of a fairly gnarly, dark purple skin sorta seizure. Jared and I were nervous as she got up on Sunday, she looked alright, we so badly wanted her to get to go to her friend's party. We took the morning easy, had lunch, a nap, then a bath to get ready and just as we were about to leave she puked up everything that she had eaten that day. My heart sank. It is hard to tell what it just nerves and what is legit sickness on occasions like this. She looked a little out of it, we debated what to do. We settled that we would drive down to the party and worst case keep driving and park by the beach if she wasn't feeling well. Am I ever glad that we tried! Not only was Claire raring to go by the time we got there, but the other kids were so happy to have her there. Before I knew what was going on (my name is Colleen and I have social anxiety) the birthday girl had picked a cat out for Claire and another friend had her hands up in a field of two to help Claire select colors. Claire was in her element, so comfortable and happy, it was pure joy to see. After the painting was done the kids went into a little hideout to watch a movie. There was a small hole in the wall, Claire couldn't see the screen from her chair. Just as I realized that I needed to prepare to fight back the tears one of the friends climbed out and asked if I needed help getting Claire through the hole. So with the help of two 6 year olds I got Claire sitting against the wall and she gave me "the look", the one that said I was no longer needed. Just as I thought about actually walking away because she seemed fine her friend piped up, "we've got her" and so I walked away and chatted with the other mothers. This changed everything, EVERTHNG! No longer did I have to spite the little girls for being so cute and using their hands, these girls used theirs to help their friend. No longer did I have to resent the other moms for not realizing what they had, these people were really nice and lets face it, they are raising amazing little girls who are kind and compassionate on top of being fun and all the other stuff that comes with little girls. Eventually Claire got wheeled by one friend to the place of honor, sitting next to the birthday girl for cake time and when that was over one of the girls asked Claire if she wanted to go play with the kids, waited for her clear response of yes and then pushed her over to the group on her own, it was AMAZING! It was everything that I had dreamed of for Claire before I knew that she would be speechless in a wheelchair at the age of 7. It was normal life, it IS normal life. Somebody pinch me, I have a daughter who is 7, has a fantastic sense of humor and adventure and friends to play with. This sense of normalcy is so far from that sense of isolation in those first few months after our diagnosis. We focused on trying to preserve hand use and developing her strength to walk so much that I lost sight of the outside world. Somehow, in the midst of all the work, people, truly amazing people have come alongside us and brought us back. It hasn't cured rett syndrome but it sure has made it seem like a lot less of a problem.


What I'm Not Giving Up

There are a million cliches out there; what doesn't kill you makes you stronger, it's always darkest before the dawn and so on. I hate those kind of sayings. I don't think they do the process of riding the roller coaster of life justice. Feb. started out rough, really rough. I don't think I have ever been so close to the reality that Claire might be leaving us sooner than later. It was horrible. Even after the seizures and vomiting subsided a bit she wasn't back. There was no smile, no sound and the look in her eyes was more distant than piercing. We went through the days just faking it and trying to do what we could. By Valentines Day she was better but I was fearful. Holidays, birthdays, anything special with extra excitement seems to bring extra brain activity and the last time we rode in an ambulance it was on Valentines Day. Somehow, in the spirit of you never get what you expect, Claire had a great day. I picked up my smiling, bright eyed girl from school and was relieved when she continued to shine at physical therapy. Since we had time to kill before we had to pick Chloe up from school Claire and I headed down to our favorite little stretch of sand to take in some waves. There is something about the beach that transcends language and abilities and Claire comes to life there. It was magical, like it always is. Eventually we had to go and that involved me carrying her up these stairs.

As we reached the top a couple remarked to me that I wouldn't be able to carry her all that way too much longer. Perhaps it wasn't the most sensitive remark that they could have made but in some weird way it was exactly what I needed to hear. In the process of all of the crazy I was giving into to my sugar addiction too much, I was tired and not making good choices with what I ate and did to take care of myself. As I struggled to get Claire into her chair she glowed, her smile and eyes told me over and over how much she loved our time in the sand. In that moment, at the top of the stairs I vowed to myself that I would do whatever it takes to be able to continue this activity for as long as possible. I can get stronger, eat better and Lord willing, I believe that Claire will get stronger and contribute to the process too. Fast forward two weeks. Claire had been doing well and it freed me up to focus. I've been eating a plant based diet with no refined sugar and I feel amazing! With a clearer head I relate to others better, I remember more details and have less frustration, it is amazing. Still, eating well and stretching doesn't take all the pain out of life. I was a little down as we had to visit the neurologist to discuss upping the seizure meds. When I picked Claire up from school later that day it was 77 degrees and we had a few hours before Chloe needed to be picked up. We brainstormed but couldn't think of anything better to do than go down to our favorite beach and get our fill of sun and sand, but this time it was different. When the time came to leave, Claire did an amazing job clearing the first 13 stairs on her own. I was so pumped and proud of her that once she fatigued I picked her up and ran up the rest of the way and it felt easy! It was such a good reminder of why I need to take care of myself. All I needed was somebody to tell me that I couldn't to be reminded that I am a fighter and I will be fighting for life, much like Claire does every day.