Trying to wrap up my weekend at the Rett Syndrome Family Conference is not an easy task and not a task I have been interested in doing. Well I take that back, I really want to write it, I just want it written and posted with out me putting any effort into it. Is that possible? Can I just think it and it show up? No? Alright, I will get to it then. I sure get a lot of writers block and I am not even a writer. I don’t know if it is to do with the fact that I was so sick, then I was at the conference that was all day every day then I catch a cold, then I get home and the kids of course want me as I want to play with them, then it is summer break and everyone is home, my house is a mess, etc etc etc. But instead of wasting my time saying why I didn’t write, how about I just get to it.
Friday was a hectic day and I was still running at maybe 75%, that is being liberal, I had to be at Lily’s school with all 3 kids at 7:40am for a breakfast with the principal. It was fun, Andi ate everyone’s donut while Oliver ran all over and I tried to sit and chat with Lily’s teacher. Lily took one bite of a donut and went into a weird seizure. Then she was quiet and not participating in the breakfast. Then we walk her to class, who was later that day having the end of the year party that I was missing, and I kiss her a million times and tell her goodbye. Then we head home where I get ready to go. My niece, Ariel, came over to take Andi Jane to a swim party for her end of the year party, I kiss and hug Andi and tell her to be good and she says “ok, let’s go Ariel”, she’d realize she missed me after the party I am sure and me and Oliver head to meet Andrew at his office and they took me to the airport. On the way to the airport I start wondering out loud, what am I doing? I’m going by myself out of town for 3 days. I’m leaving my baby whom I have never left before, who was still nursing once or twice a day still. I am going where I know no one. I was still sick and could hardly eat. Panic was starting to set in. Andrew like always reassures me that all will be well and this is a good thing and it is for Lily. It’s not like I was going to Abu Dhabi with my girlfriends for a week. (ok he didn’t say that, I just saw S&TC last night) We show up to the airport I kiss my baby all over and tell him goodbye, Andrew gives me a firm handshake and tells me to have fun. Ok maybe I got a kiss on the cheek; he was very frightened of me and my strep. And that was it. I was alone and heading to Co Springs. Security all alone was ridiculously easy. Then I sat and sat. I people watched and sat. I was next to a Starbucks and my throat still hurt so bad that I didn’t even get to enjoy one. That should say something.
Ok so I get to Co Springs at 6:30pm and I find the hotel shuttle but we have to wait for other people, it was a quarter past 7pm when we finally get ready to go when the shuttle driver turns the key and the engine doesn’t start. He throws his head back in frustration and I giggle. What is that not the appropriate response? I should mention that previously I was thinking I was given signs to not go. Oliver sick, then me sick, then missing Lily and Andi’s end of the year parties, so when the shuttle doesn’t start I’m thinking I need to call the airline and get back on the plane. But he gets jumped pretty quickly so I take that as a sign to stay. I think I would be the person who walks on an accident prone plane, seeing that I do notice signs but do nothing with them.
I get to the hotel, check in, register, put my bags in my room then get to the ball room where they have opening discussion. Well it was almost over and I stand in the back. I watch them do this ice breaker thing and I watch. I feel like a turd in the punch bowl. I am not talking to people. I am feeling awkward and homesick. Then the group breaks out and it is 8pm, I see that a meeting for CDKL5 is going on, I head there and then I automatically feel a sigh of relief. I see three moms who I am on an online support group with and we introduce ourselves and hug like long lost friends. It was only us 4 at the beginning and we chat. We are the only CDKL5 parents at the entire conference. Then in walks a Dr. and a British guy with IRFS who was very kind and helpful. It was very kind of IRFS to invite and involve IFCR and this guy was willing to help how he could. CDKL5 is not Rett syndrome. I guess there are some debates on having CDKL5 considered atypical rett syndrome. It is all very confusing, but from a parent, who knows nothing about the science, I saw a lot of girls this weekend and they seemed very similar to Lily and a lot of the meetings we attended had a lot to do with how we care for Lily. And that is what mattered to me. So we talk for a little over an hour. I was beat and starving so I wasn’t really “there”. At 9:30pm three of us go into the restaurant and we get a glass of wine and I eat. We chat and then head to bed. Saturday was a busy day.
Our first session was at 8am and it was Rett 101. Then Genetics 101. Holy crap, over my head. I can’t imagine Genetics 407 because I was a goner on that one. Then we had a keynote speaker who spoke to our hearts, not brains. She actually wrote two books that I have on my bookshelf. She wrote Writing to Heal the Soul which I went through years ago and she wrote Keeping Katherine but it was originally called Grief Dancers, which is also on my book shelf, but I have yet to read it. Her name is Susan Zimmerman and she was wonderful. I spoke with her afterwards and told her how much I enjoyed Writing to Heal the Soul and she was very gracious. She had us all in tears many times, but she was very inspiring. She did what I would love to do one day, write and speak to families. One day. One day….
We then had a great Dr. speak about what is right in these kids brains, instead of all that is wrong. She was great and I wish we could take Lily to see her in New York.
Then I got what I was meant to get out of the entire weekend. We had three women who spoke about communication. Rett girls don’t speak and have limited hand use, just like Lily and communication is not something that is easy done. We’ve had therapist try sign language, no. Using a switch with her hands, no. Talking, no. These women use their education, creativity and compassion to figure out ways to get these girls to communicate. I won’t go into all the detail of the how-to’s, but I will say it brought me to tears to watch videos of these girls who so many dismiss as mentally disabled, or gave up on because they didn’t reach the goals because of their severe apraxia, actually communicate via switches, or touch or this amazing eye gaze computer system. (something I wish Lily could get, but I was told kids with CVI cannot use it). It just shed so much light on me. I feel like so many people give up on Lily because she can’t communicate in the way professionals are taught to teach kids, but girls with Rett syndrome (and CDKL5 and probably many other genetic disorders) have this apraxia that makes it so hard to get the brain to communicate with their body parts. They know what you are saying, but trying to communicate is so hard. I feel sad that we’ve gone almost 8 years without understanding why Lily struggles and I’ve listened to others who aren’t familiar with her condition tell me she can’t do things. I have seen proof Lily hears us and understands so much more than we know. Just thinking about it makes me cry. Can you imagine living in a body that your brain refuses to let do anything. It is heart breaking. But I am so glad I learned all I learned last weekend. I will never talk about Lily like she doesn’t understand me, I generally don’t, but when I am talking with professionals they sometimes talk about her like she isn’t there and I will no longer let that happen. Oh my Lily.
We had lunch break then more talks on neurology, which I don’t want to brag but I knew everything they said, then ortho, then GI and then my brain was mush. I had to take a break. I went to the pool, plugged in my itouch and listened to my book and checked out. Then back to my room for a bath and nap and then met up with everyone for dinner. Then that evening we had a tribute reception. It was nice, they gave out awards and Kevin Black sang (Clint Black’s brother whose daughter passed away from Rett syndrome). They played a video with pictures of all the girls whose families were there and that was emotional. It is overwhelming how beautiful these girls are. It seems like it is part of the condition, to be extremely beautiful. I’m not being biased here either. I’m not.
There was a band later from Nashville who I am not sure their name, but they sang and people danced. The guy came on the dance floor and sang to the little girls on the dance floor, it was very touching. Many families brought their daughters and there are many variations of physical disabilities with them, some could walk and some were in wheelchairs. Just like the CDKL5 kiddos.
Sunday we had our first meeting at 8am and it was on CDKL5, we were a small group again but it was very informative. The president of IFCR, and my friend, spoke as well as a neurologist and scientist/researcher and I was very well informed with what I thought would be stuff I already knew. After our hour session the Dr. said he would be willing to chat with us so I missed a couple meetings I had planned on going and just sat with this Dr. and us moms and one dad for about 90 minutes. He was so nice and well informed and honest. I got a lot out of our talk and was grateful for that. After that three of us moms chatted by the pool. I was the only non committee member for IFCR (international foundation for CDKL5 research) but told them I want to help and I want to do a fundraiser and the ladies were very informative and motivational! They explained to me what we need the money for and how much we need. They are pioneers of this organization and have a long way to go, but everything has to start somewhere! We had lunch then went to my last meeting and that was on fundraising. I am so glad I went to that. They had such great information and inspired me to do something here in AZ!
Then I went back to my room for a bath and a nap. I cannot tell you the last time I had taken a bath and nap before that trip! Then three of us moms went to downtown co springs for a nice dinner. We had such a great time! We had drinks, great food and we just talked for hours. It was such a nice ending to a great weekend.
Then Monday I decided to hitch a ride with the moms to Denver and skip my puddle jumper flight and then we all went our separate ways and I was home before I knew it.
Greeted by the van full of my family who had just come back from up north with my parents, it was so good to see them all! At home we just went back to our old ways, we swam, we jumped on the tramp and we got take out for dinner. I tried some new techniques with Lily for communication, just something as simple as putting my hand on her shoulder and asking do you want this or this and whatever hand her cheek hit I went with that response. She was very responsive and if it was purposeful or not, I’m going with it.
I’m glad she isn’t going to summer school this summer. I am excited to try new things with her and be home with her. Most likely I will be working every summer after this one so this will be nice. Her last day of school was Wednesday and summer is in full effect.
I do have some programs for Andi to do this summer, but that is it. Lily and Oliver will be home the whole time. June 29th Lily has a scheduled stay at the hospital for the EMU (epilepsy monitoring unit) and Grandma Cheryl with be coming to help with the other kiddos while Lily and I will be at the hospital. We will be going to South Dakota July 8th for a long weekend and we are very excited about that! It’s been a long time since Lily and Andi had been!
Oliver has been totally weaned and it was so easy! He only asked once to nurse when I came back and has been fine with out. I am surprised at his appetite! He eats more than the girls each meal and he is only almost 16 months. So that is a note to his future suitors (is a girl called a suitor?) the way to this boy’s heart is his stomach! He is so cute and so much fun! I am really enjoying my kids right now; they are all so cute and just in fun stages. Andi is so excited about starting kindergarten at the end of July and oh my gosh I just can’t believe it is happening. I will have two kids in school. That is just crazy. I won’t know if she can ride on the bus with Lily until the start of next year (it is a matter of space), but I am going to think positive that it will work out just fine.
So wow, see why I was hesitant to post? I had way too much to say. My kids have torn the house to pieces in front of my while I wrote this with Spongebob as my background noise so who knows if this makes any sense. If it doesn’t we can blame Spongebob. We can blame him for lots of things.
Oh one more note, we are trying to get a TAOS orthotic device (look it up on Youtube) and our first request was denied. Then my appeal just got denied. We are going to try something else and if that doesn’t work we will appeal to the higher court. This looks like something that will help Lily so much, she would be able to be upright in our home, she can play with her siblings and she could walk in it if she wanted to. I don’t understand why we have to fight for everything, but the state services that are supposed to help for just these instances are totally refusing. But that is where we are on this topic.
Sorry for the length of this post. But I find it quite charming about myself, my lack of my ability to edit.
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