Imagine

 I am a very left brained person. I excel in areas that involve math and measurement, things that are concrete. I actually met my husband when I took art class in high school, for the third time. Who drops art? I do, because it was ruining my gpa and I hated it, completely left brained. This has never been that much of a problem, I have tried to stick with my strengths, but that is no longer an option. You see, I have a 2 year old, Chloe. Chloe exists, for the most part, in something very far from reality. Some people refer to it as play, make believe or pretend. However, Chloe takes it a few degrees farther than what I believe these imply. For example, Chloe might say that she is hungry and wants a snack. However, when I go to the kitchen she throws a fit and drags me to her kitchen where she makes snacks for the two of us and a few of her favorite dolls and animals. For just over a week I had the distinct displeasure of being referred to as Mother Gothel. Chloe was Rapunzel, Jared was Flynn Ryder (he always gets to be the prince!) Claire was Max the horse and I was the evil mother, lovely. Chloe even referred to our apartment as 'the tower' and would pretend like she had never left it. You can understand why I was excited to find out that the script had changed. Chloe was Ariel, Claire was Scuttel, Jared was King Triton and I was Sebastion, yeah! Since the story line was changing I figured I would take things a little further for fun. That is when I told Chloe that Claire was indeed, a real mermaid and that is why Claire does not walk or talk. Claire laughed out loud and grinned from ear to ear as I told the tale of the day that we found her on the beach, it was fantastic! She often has to hear the real explanation of what rett syndrome is and it was obvious she preferred this explanation for our circumstances. After a brief pause while Claire laughed, Chloe spoke up with a seriousness that was downright different from anything I had ever seen from our little blonde bit of variance. She corrected me, "but Claire talks!" Silly me, how could I be so mistaken. Claire can't be a mermaid, because she does, in fact speak. It was so precious. So we will go on pretending, because it is fun and we can. But make no mistake about it, Claire talks, just only to those who listen.

Valentine's Day, minus the heart attack

Last year I blogged about my Valentine's Day Heart Attack. I am so glad that it has come and gone this year with absolutely no contact with a neurologist, doctor or any medical professional. In fact, it was rather normal. Sure, Claire didn't really eat (rather what she ate didn't stay down) or sleep well on Monday. Tuesday she was a little emotional, but with the help of Natalie the most amazing aide on the planet, we made it through. So here are a few pics from our super average holiday, yeah for average!!!!

Claire stamped her name on all 50, yes, 50 of her valentines

She also got her special valentine friend some super cool stickers for his new ride.

Chloe expressed herself with glitter and glue, there are no pictures from the process due to safety concerns.

While the girls were at school I got to take a walk with a good friend, love that!

Pretty sure that Claire's favorite part of the whole thing was this super cute hello kitty that she got from her friend Josh, between the boots and the tutu, he's got Claire's number!

Celebrating

Have you ever been having a conversation with somebody about nothing special when all of the sudden a simple statement seems very profound. Recently, a friend mentioned that they had another friend who had a child with severe medical problems. They said something to the effect of, "it really changed them". It seems obvious right? Once you hold your child while they convulse and turn blue it does change you. For whatever reason, this statement sat with me in a very profound way. I have changed. Whether I like it or not, rett has changed me. I don't know that I am a better person for it, but I know pain and darkness on a whole new level that I had never conceived of. I now understand why there are statistics with 85-90 percent divorce rates within the special needs community. It is hard to love while you are being changed. It is hard to be loved when you are reeling from traumatic events that involve your child. As I look back I can clearly see a correlation between some of the hardest things that we had to deal with for Claire and the most troubling times in our marriage. Sure, in the moment of crisis we pull together to make it through but the moment that the adrenaline wears off and the emotions start to emerge things can get ugly fast. For us it was the two years following the regression. We joke now that we didn't want to so much get divorced as kill each other. We both dealt with all of the stuff differently and we were too exhausted to be able to think that through, it was a very hard two years. Over the last few months I have connected with a few of you out there that are in the more recently diagnosed category. I just wanted to put this story out there, in the hopes that it might encourage you. There is no way to train or prepare to go through the crazy that rett syndrome takes you through. If you find yourself falling apart, in the dark, hold on. Give yourself the space to fall apart and put some people around you to help pick up the pieces. For us it has been grief/marriage counseling for nearly three years. It took the first year before everything fully unraveled but it did. This past weekend we sat down and celebrated the adventures of Captain Awesome and Miss Amazing. We have both emerged, for lack of a better term, from the throws of the grief and darkness that overshadowed our life. We have been changed and are able to live a life where love can coexist with the pain of holding a child that has turned blue and is fighting to come back. We are ever more grateful for each day and the joys that are within it. We have found that there is so much to celebrate when you come back to the surface. Today our marriage is stronger than ever, our bond closer. We honestly can't believe just how good things are, it been one heck of a comeback. Great comebacks deserve celebrating, so for now, that is what we are doing. Since I am a food geek I will share a pic with you, nothing says celebration to me like good cheese, fresh crab and champagne.

Let It Be

Have you ever had one of those moments that feels like it is in a movie. Something very profound happens, the perfect song is playing in the background and everything happens in slow motion. Tuesday morning I had one of those. We were sitting around the table eating our oatmeal, Jared was just finishing up making his coffee. We were listening to the Beatles and watching pictures from Flickr on the tv. Claire hands stopped moving, she looked at me with that smile, the one that says, "it's coming." Her face started to twitch as I picked her up and held her in my lap. I stroked her hair and started to sing along with the music in an effort to calm us both. As the next song started I realized that it was Let It Be, how profound. As I sat there, holding Claire, trying to calm a body that neither of us had much control over, Chloe alternated between dancing in circles like a ballerina and playing air guitar. All that I could do was just be there in that moment. To not retreat to the darkest places within my soul, where I so badly would rather hide from all of the hard and ugly parts of life. But there is no joy there. I need me to be here, so do my kids and my husband. So it was with that deeply profound moment that I was reminded to simply BE. It is something that I have been in pursuit of for a while. It is easy to get off coarse, to forget, to loose sight of the goal. But this is my life. I have one daughter who stops breathing several times a day and another who dances and twirls without rest. Oddly enough, this very surreal scene in one way confirmed a decision that I had hemmed and hawed over for several weeks. Chloe had been going to school three days a week and I felt guilty for that. Last week I reluctantly signed her up for a fourth day. As a stay at home mom it is hard to send her to school for 16 hours a week. At the same time I know that I need it and honestly, she does too. Her school is awesome and she loves every minute that she is there. It is her special place, a thing in her life that doesn't revolve around rett syndrome and that is a sacred thing. So here I sit, on a Friday, by myself, trying to just be. My pictures aren't as cute without the bright blonde pigtails in the bottom of the frame, but this isn't too bad.