It was a whirl wind weekend, but it was fabulous! Going to Colorado and back in less than 60 hours was a pretty crazy thing to do, but I am so glad that we did it! The weekend was packed with lots of opportunity to listen to some really remarkable people talk about Rett Syndrome and it's many facets and what we can do as parents to help. It is way to fresh to know what we heard in much detail. I am hoping that after I sleep for a few more hours my memory will come back to me. I have noticed that I am talking funny now after being at the conference. For example, we stopped at Chipotle on our way to the airport after a very long day of listening about lots of super important stuff. They were having happy hour, if you buy one Corona they give you a second one with chips and salsa for free, sold! Jared and I both stick our limes in and in the moment that you normally tip the bottle slightly to mix up the lime, I completely spaced out. If you do that for too long, you make a beer explosion, which I certainly did. But what was the first thought, clearly my synapses are not firing correctly and I don't have an established motor plan for this (lately I have been sticking to North Coast Brewing= no fruit in beer) so of coarse there was a significant delay. Jared tried to tell me that he has communication apraxia and that when I tell him something that he needs to do, it only slows him down, clearly we listened way too much at the conference. On a caretaker level it was nice as I felt like it was way more affirming than Chicago was two years ago. We are actually doing some things right, who knew?!? Claire had the honor of getting her picture in Dr. Jone's presentation about an enriched environment and Judy Lariviere shared a story of Claire's recent success with her device with the one of the larger groups that she spoke to. There are plenty of things that we learned that have us fired up to tweak or change for Claire, but really I need to sleep before I can try to remember what any of those are. What is fresh and in the front of my memory are the good times that we had with friends, both new and old. I did feel a little odd when I met one mom that I knew through the blogosphere for the first time. As she would tell a story I could interject details because I had read her blog, awkward! But the coolest thing about Rett families is what would normally be an awkward conversation isn't. They get how much the 3rd birthday sucks and the stress of a nap that goes too long or feeling like a failure because you didn't realize how much pain your daughter was in after a fall and the crazy stress of super complicated hospital bills. They are normal just like us. That's right, you read it right, normal! Because in Rettland everyone worries about seizures and weight gain and it is normal, and honestly, I like it there. Of coarse if there was a cure I would leave in a heartbeat, but so would everyone else. While we were gone the girls had a tremendous amount of fun. We surprised Claire with the game Pretty Pretty Princess once we were gone and from the pictures that were taken(at the top), it looks like she enjoyed it! From the looks of the pictures Chloe had a good deal of fun as well. Then again, when has she ever not?
Two years ago I was preparing to fly out to Chicago for my very first IRSF annual conference. My grandmother had just passed and I had to choose between going to the conference and her funeral. As I think about preparing (because I still don't leave for another 24 hours, way to early to pack and get ready) for the conference this year I have been thinking about that trip and how weird it is that I am going to another one. I am thrilled and very excited to be going. I look forward to seeing some of the faces from two years ago as well as ones that I see more often, only this time with no kids! I constantly struggle with feeling like a complete failure in the mom department as Rett Syndrome is just so darm complicated! I know that I will learn a lot about some of the topics that I second guess myself on and that will be a huge help in our daily life. At the same time I imagine what we might be doing if we weren't going to a conference on Rett. Perhaps we would stay close and steal away to the city and eat at amazing restaurants that kids wouldn't appreciate or go down to Disneyland all by ourselves. But we are going to Colorado because our daughter has Rett Syndrome and we need the help, support and encouragement that is there. It is so crazy to think that two years ago I sat listening to Judy L. talk about access to communication and how many girls are given very large switches and that many can use a smaller switch. I also heard Susan Norwell talk about literacy. Once I got home I ordered a smaller switch for Claire and started working on communication. Now she has a full blown eye gaze system that she used to tell me that she wanted earrings the other night. I don't remember a lot of detail from that weekend, other than that I was completely overwhelmed. It was good that I went and brought back a lot of materials that helped Claire's team to work with her. It was truly a surreal experience. And now we are going again but under such different circumstances. I can't believe how much easier (sometimes it doesn't feel like it) living with Rett has gotten. Some of the initial shock had worn off and Claire is teaching us every day about living in a body that she can't control the way she wants to. The conference is over Memorial Day weekend each year in an effort to make it easier for families to attend. Even thought we might not go every year, we will have the marker of conferences in different years to look back on. This picture is from May 2008, I had forgotten that Claire ever could reach out and touch the starfish on her own. The other picture taken two years later, her pig tails a little longer and her smile a lot brighter.
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instuments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjotie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finially He passes a name to an angel and smiles, "Give her a blind child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a blind child to a mother who does not know laughter? That would be cruel."
"But she has patience?" asked the angel.
"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
And what about her Patron saint? asked the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."
I hope that all of the moms out there reading this had a great Mother's Day, I did!
I think it is safe to say that from age 3 to 4 pretty much all I did was advocate for Claire. Not just for services, but educating friends and family as well. I feel like all I did was try to explain to the world that there was an amazing and intelligent girl trapped in that body. Yesterday afternoon Claire was sitting at the table with her computer and Jessi when I was bringing up everything from my truck. The last thing that I came through the door with was a little potted plant that Claire grew for me at school as a mother's day gift. I told Jessi that it was my gift from Claire and what did Claire say? Without hesitation she went to the page that had "make" on it and said it and looked right at me. I told her how much I love it when she makes things for me, I was so excited that in that moment she had such purposeful communication. Why am I so surprised? Didn't I just tell the entire world that she is wonderful and smart? I am just loving it as she continues to say amazing things. Since she is using her device so appropriately I think that I will now use it to my advantage. Mother's day is coming and pretty much it goes without saying that Jared can't read my mind and so I will be disappointed on some level. So I am going to program Claire's computer with some messages about what I want for the big day. Then I will show them to Claire so she can say them to her dad on Saturday. Isn't that what people do with their normal kids? Tell them key things to say to the other parent. The picture is of Claire using her computer to negotiate at dinner. I say 5 more bites and now she says "less" I should have known that giving her this type of power would make things harder for me, but in the best possible way!
...my world forever changed. It was a surreal experience. I had a great nights sleep, got up with the alarm and took a shower. We had just finished getting ready when there was a soft knock on the door. The nanny had come to stay with Claire and take her to school since we would both be out of pocket for a while. It was a good thing that we had Kim take our picture before we left because we realized the camera battery was dead, that would have been a bummer. After getting that situation squared we got in our little Smart car and off we went to the hospital. You can tell I get admitted to hospitals way to often as I was ridiculously low key about the whole thing. They took me back to where I got to hang out and wait for the big event. Jared took off to find coffee, which is a good thing because he is a lot more fun after coffee consumption begins. Eventually they took me back to the OR where I met, and I am not making this up, Dr. Sharp, who was the guy in charge of sticking the big needle in my back to keep me from feeling. As I sat there waiting to get numb there was the most awful 80's music playing. Don't get me wrong, there was some good music from that period, that was not what was being played. Dr. Sharp had made a joke about changing it to Weezer and I spoke up, please change it, not this. After checking with all of the staff the decision was made and the Weezer playlist started to play. I have to laugh that of all the things that I could have been concerned about, it was the music. I think it was because I was in such good hands, I really had no worries. Now I am laying on the table with a drape up so I can't see anything. Jared and I are giggling because we just can't believe that we are hanging out as the Red Hot Chili Peppers played waiting to hear the cry of the baby, it was really surreal. She came out really alert and ready to go and hasn't stopped since. Truthfully this has been a year more of survival as having two people to feed, diaper and co-ordinate sleep for is really a lot. There has been a lot of moments that seemed just like it did when Claire was that age and that has been a very painful process. I am really excited for the next year as Chloe teaches me all of the things that little people do so naturally. I hear a lot of people talk about all the fun that children are and I am really looking forward to that.