The first day of the rest of our lives

One year ago today, February 27, 2012, Dr. Coffman called and said Lucy had Rett Syndrome. One week after that day I looked at Chad and said, "Well, a week has passed and we made it."
At that point, and for quite some time after, we were just trying to get by, not cry, and keep going. We kept trying to remind ourselves that nothing had changed for Lu and that we had to keep our heads up and not bring her down too. It was a pretty rough time for us; besides the devastating news, it was also Chad's last semester in school and we were anxiously waiting to see if Minitab was going to hire him.

Truly a day does not go by that Lucy does not amaze us in some way and so I inevitably think about stupid Dr. Coffman and his misinformation on a very frequent basis. I know I have said it many times before, and I'm certain I will likely rant on about him for the rest of my life, but how could he say the things he said, when they are just not true? How could he give a family information without being 100% certain that it was accurate? And maybe he thought it was, but he was wrong and therefore negligent in his duty to care for patients and their families! In the past year, Lucy's brain has most definitely NOT been deteriorating, because Rett Syndrome is NOT a degenerative disorder...like Dr. Coffman said it was! He said she would just continue to lose abilities...but wait, in the past year she has learned to stand for longer and longer periods of time, take steps with support, and use her head to signal yes and no while navigating through a communication book! Hmmm. Oh yeah, and has started feeding herself somewhat...again.

Dr. Sasha has a patient in her 60's. Dr. Coffman most definitely led us to believe that only "some" girls live into their 20's and 30's. In blogs that I read by other mothers who have daughters with Rett and on Facebook sometimes, I am always surprised when someone says something about a shortened life-span. I know that is likely the case for most girls, but when I read something like that it makes me realize that I don't think about it. In the past year, I believe that I have learned to think pretty much about "today". That can sometimes include this week, this month, and even this year. But I guess I have learned, thankfully, to not sit and dwell (too much) on what Lu's life will be like in 20 years. Two months ago she was not talking to us daily with a PODD book, and one month ago she wasn't helping feed herself again...who knows what tomorrow might bring!

This day one year ago was bad, no doubt about that. Today is hopeful. I still get sad, and mad, and cry, and I always will. But we just have so much hope, with or without a cure, for the life Lu will lead. An example I'd like to share is about a beautiful handmade recipe box I have. My maid of honor, Ann, had her dad make it for me for a wedding present. When Lucy was born I started organizing my recipes, re-writing them, gathering them up, to pass on to her someday. After the diagnosis I was heartbroken and believed she would never be able to use it; just one of the million things I thought she would have to miss out on. I have continued to "work" on it here and there, but the other night I realized, of course she can still use it! She'll need to borrow someone else's hands, but what's new? That's what this year has taught me and helped me to accept. Lu can't do many things on her own, but she can do anything with our help!

Rett Syndrome is certainly not the worst fate that could've befallen us, but it was pretty bad, and as a family we have not just survived it, but we have thrived. We are stronger than we were, tougher, braver, and smarter! Life is good.

"Promise me you'll always remember: you're braver than you believe, and stronger than you seem, and smarter than you think." - Christopher Robin to Winnie-the-Pooh, from The House at Pooh Corner by A.A. Milne

Euphemisms

Here are three things that Lucy said this week:

To me: "I like this, lucky, amazing, mom, dad, help."
"I don't like this, sad, help, thank you"

To Chad: "I like this, great, lucky, why, help, I love you."

To the first statement, I asked her if she feels lucky to have us to help her; she nodded yes. To the second statement I asked if it makes her sad to need help; she nodded yes and was crying a little bit. To the third, I later asker if she wanted to know why we needed to help her; she nodded yes.

She's not yet three, so at this point I am simply flabbergasted at how, not only can she can use her book to tell us how she feels, but also that she is feeling these things. This is going to sound maybe conceited, or braggy, but I often feel like Lucy is a little wise beyond her years. Chad says he thinks the same thing.

So, as I overruled the sound of my heart breaking in my chest, I answered her question. I told her we have to help her because she has Rett Syndrome. I told her I know she has heard us talk about it, but maybe she doesn't know what we mean. I told her there are lots of other girls just like her and some can walk, and some can't, and we are always going to keep working on her learning how to. And I told her that it was something that just happened, for no reason. I told her that we love to help her, but it makes us sad sometimes too.

I didn't know what to say! I still don't know what else I am going to say as she asks more questions. What Chad and I do know, though is that we will always tell her the truth, to the extent which we think she will understand. Which, leads me to yesterday. We drove an hour and a half away to Milton, and picked up Lucy's new Otto Bock Kimba Spring Tilt-in-space...wheelchair. When the pt came to measure her and assess what her needs were for a mobility system, he called it an "adaptive stroller". The Otto Bock manual, however, calls it a pediatric wheelchair, it looks like a child's wheelchair, and in the equipment section of the PODD, there is a picture of a wheelchair. We are just going to call it what it is...a wheelchair. The word is sour in my mouth, but it shouldn't be. "Adaptive stroller" is a euphemism, and really aren't euphemisms just cowardly ways of not saying the truth. Lucy can't walk. It's not a secret to anyone, including her, and to just go ahead and say "wheelchair" simplifies everything. People know what a wheelchair is, it's just one word so Lu isn't confused, and it's just easier for everyone. Maybe it's not easier emotionally, but what is at this point? I smiled and cheered and said positive things as they fitted the wheelchair for her yesterday, but I also wanted to cry and scream, and maybe puke a little bit...I think we are getting good at keeping that at bay when necessary.

But guess what, Lu was tickled pink with her new ride! She looked comfortable and happy and got to eat lunch in it instead of having to get squeezed into a stupid wooden high chair that provides her with no support, and she slides out of constantly. That's all that matters.

"I have an idea..."

On Sunday night during supper, Lu said with her PODD, "I have an idea, I, help, more, eat". I asked her if she wanted to help feed herself more and she nodded, "yes"! In the past Lucy has been able to finger feed herself and could get a loaded fork to her mouth with some assistance, but as time went on she was having less and less success. If she managed to pick up a piece of food, and this she could only really do with her left hand, the hand would most of the time flick the food away before she got it to her mouth. We tried using the same cuff that we use to color with to hold a spoon and she didn't like it at the time, so I have just been feeding her myself for quite some time now.

I'm sure I have mentioned that girls with Rett often have a great deal of difficulty gaining weight and maintaining proper nutrition and hydration. Weighing in at nearly 35 lbs and being 38" tall, this is not currently a worry we have for Lu, but I am passionately determined to keep it that way! So getting food in her is my main priority when it comes to mealtime and keeping her healthy and strong. But...her quality of life, the combination of every aspect of her care and needs, is the very tippy-top priority. Besides keeping Lucy physically healthy, I am always thinking too about her mental health. How does she feel about her life? Is she frustrated sometimes? Does it embarrass her to drink out of a bottle...does she wish she could feed herself? Chad and I thanked her for telling us that she does in fact want to help feed herself and she smiled.

I am always so torn between letting Lu struggle with something or swooping in to help her. On the one hand, she has to struggle with everything she does so some things I think she can be helped with. However, at the same time, struggling a little is how she will learn things and be proud of herself. I don't always swoop in; I restrain myself, but I'm sure I do more than I should at times. She is just so amazingly brave and motivated, and strong, and patient. Even when she is struggling with something, she rarely gets overly frustrated about it which I am always so grateful for. With Rett Syndrome it's just always so hard to decide if a task is something she physically can't do right now, or if its something that she could do if she worked and worked and worked at it. When we were working on feeding before she had little interest in it and barely got anything to her mouth, so we worked on other things.

But now, at her request, Lu has eaten half a can of chicken noodle soup, a packet of oatmeal, and two sandwiches with much less help from me! She is very cooperative with the universal cuff now also. I just support her elbow and lightly hold her wrist to help her keep it steady as SHE brings it to her mouth. She has also been doing better at picking up pieces of sandwich and getting them to her mouth too and she just beams with pride as she is doing these things! I have apologized many times to Lucy for not asking if she wanted to help feed herself. I'm so glad she can tell me things!

Chad

For a Valentine surprise, last weekend Chad took me to My Jewelry Box in DuBois to pick out a Pandora bracelet, which I had mentioned I thought would be nice to have. It was a wonderful surprise, and I LOVE it very much! But...I now feel pretty inadequate at reciprocating such a wonderful gift. What do men even want for Valentine's Day? So, I have decided to create a "public" declaration of my love and appreciation for Chad!

Prior to dating Chad, I had only "dated" one other boy for an entire year straight and that was when I was like fourteen, so it barely counts. All other beaus usually lost my interest in less than a year. Also, a good deal of my fellas before Chad were more along the "bad boy" type, not all, but quite a few. I thought I could "fix" them and help them to see how much better life could be. Along with that often came worrying if they were going to be high, or driving drunk, or if they were safe. And then one day, along came Chad. "Don't drink, don't smoke, what do you do? Goody, goody, two-shoes..." I didn't have to take care of him all of the time, but we took care of each other, and that was so much different and so much better!

Chad and I were working at Dunhams together; I was a cashier and he was a manager...and we fell in love. He was so funny, and sweet, and cute, and I loved his smile. His big blue eyes were soooo dreamy too! Chad asked me to marry him when we had been dating for less than three months, it was on March 16th 2004. This year will be our 8 year wedding anniversary! So, even though he was very unlike most boys I had previously been attracted to, I just knew that he was the one.

In the 8 years that we have been married we have: bought a house, sold it, moved to Clarion, Chad got a college degree, we moved back to where I grew up so Chad could do an internship, and then he got an awesome job. We made a gorgeous, amazing daughter, we dealt with the news of her Rett Syndrome, and now we are building a house. We are hard workers and a really great team. I could not imagine any better of a partner to share life with.

Our life is not perfect, our relationship is not perfect...we are not perfect! We argue and disagree and have rough times sometimes. We get on each other's nerves! But we also love each other unconditionally. Even the things that might drive us crazy about each other, we still accept them and love the other for who they are. We help each other work through things. We say thank you all the time. Every night when we sit down to supper Chad says, "Thanks for making supper honey."

We know each other inside and out. We know what the other is going to say and do. Sometimes I could have a conversation with Chad, minus Chad, because I know him that well. I like it that way. I have said before that he is my rock, but I think I am his too. We know that in this world of uncertainty, we can always, always depend on each other...ALWAYS. I don't know if I could ever ask for more. I hope I never, ever, ever have to know what it is like to be without him; I don't think I could bear it.

Honestly, even after all that I just wrote, I still feel like I haven't nailed what I want to say about Chad. But then maybe I don't have the words to explain how completely I love him.

PODD book extras

For any other Rett parents who might read my blog and also use the PODD, I wanted to share a few little extra things I have done to make the everyday carrying-around of the book more convenient. First, I kept forgetting the yes and no buttons downstairs when I went upstairs so I made a little pouch (out of one of Lucy's old shirts) and I have tied it to the long piece of PVC so her buttons are always with the book and I don't have to remember them or use up another hand to carry them, and since I only have two hands, this has proven to be very helpful!

After trying out several scarves, all of which kept getting torn by sliding through the PVC, I remembered a messenger bag I had that I never use and so I took the strap off of that and used a shoelace to attach it to the book. I threaded the shoelace through the PVC and then looped it and tied it to the metal part of the long strap. This made a much more durable, and adjustable strap and I love it!

Just to pretty it up a bit, we also covered the PVC with colorful duct tape, since it is water-repellant it should be ok. I think that one of the most important things about carrying the book is finding what works best for you, and none of the things I have done might work for anyone else, but I think to ensure our willingness to always be carrying it, it is important to feel comfortable in it. Chad is also working on a picture for the back cover of the binder. I found with that particular binder, stickers WOULD NOT stick to it and so I glued them on, and they still have mostly fallen off at this point. I also want it to be pretty for Lu to look at and so she feels proud of it, since it is her book, and her voice.

Those couple things have been so helpful to us, and I just wanted to share in case they might be helpful to anyone else!

Too amazing for a title.

Yesterday, with her PODD book Lucy said:

Just swimming

Every week we meet Lucy's pt, Mari, at the State College YMCA and Lu gets to have one of her three weekly sessions in the warm therapy pool that they have there! It is super nice, and free to us because Easter Seals, where Mari works, has a deal with the Y. Lu always enjoys herself and gets lots of good exercise and works really hard. This week Mari got a little life vest out with a pillow on the collar to keep Lu's head out of the water, and she SWAM on her back...by herself! We were right beside her of course the whole time, but she was actually using her legs and arms to move herself through the water. I would say we went back and forth across the entire pool maybe 5 or 6 times! It was amazing! I took a video to show Chad and then I made some pictures out of the video to include here! I can't wait for summer for when Lu can swim like that every day and I found the same life vest for $20 so she can have one of her own to use at Nanny's pool! What I really can't wait for is someday when we are able to build a little indoor pool of our own so Lu can swim all year long; that's our big dream!

Preschool and the panic that goes with it

Last Wednesday we went to visit the preschool I had in mind for Lu. She will be THREE YEARS OLD this year! I can't even begin to believe that she is so old! But she is and I have felt for a long time that it is important to let her go to a little bit of preschool. She is going to go to two days in an integrated classroom which means she will be with children that do and do not have disabilities. Chad and I were very adamant that she not be in a class that only had children with special needs as she needs to be challenged at her age level and there's no reason for her to not be with all kinds of peers.

Now, in general, throughout life, I have never seen myself as a control-freak...maybe others have seen me differently, I don't know. But, when it comes to Lucille May, I am a self-proclaimed, unashamed, unapologetic, super-mega control freak. I have very clear guidelines for all that she needs in a day and how that should take place in her life. My cousin, Danielle, calls me bossy; I instantly correct her and say "assertive". I don't believe anyone takes care of Lucy better than Chad and I. Grammy and Pappy do a pretty bang up job and I acknowledge there ability to lovingly and competently stand in for us, but it's still not exactly as I do it. CONTROL-FREAK. And like I said, I am completely unapologetic about it. I believe that Lucy is so strong and healthy, so big and smart because of my uncompromising standards for her care. So, with that being said, please take a moment to imagine the absolute panic that I experience at the thought of just going ahead and leaving my sweet patooty with a room full of strangers! But...I'm gonna.

As I have said in the past, I plan on being primarily responsible for the bulk of Lucy's education, so I am not sucking it up and sending her to preschool for the academics. I'm doing it for her and for her independence. With the exception of a few things (scooting, picking up toys to chew on, watching TV, smiling, hugging, kissing) Lucy needs another person for almost everything she does. That person is mostly me, and then also Chad of course when he is not at work. When she goes to preschool she will still need someone all the time. She will need help moving around the room, playing, eating, coloring...everything, but it won't be me. I think the only way to help Lu feel a little bit of independence is to let her go out into the world and do some things without me, just so she knows that she can.

With all of that being said, it literally makes me feel like vomiting. What if they let her choke, or fall over and crack her head, or what if they are mean to her, or ignore her, or don't believe in her? What if they don't use her PODD, or don't give her enough to drink, or don't dab the drool from her chin? I could probably go on forever imagining all of the things I believe people might not do as I think they should. All of the staff that I met were extremely nice, interested, enthusiastic, and seemingly competent. Since meeting them, I feel like I know deep down it will be okay, but one of my favorite quotes of all time that I tore out of a Readers Digest many, many years ago and have always carried with me is : "Worry lives a long way from rational thought." I KNOW! But it's hard to remember that all of the time!

Team Hoyt

Yesterday I read this article about this father and son and I can't stop thinking about them! I cried the entire time I read it, not surprisingly! They are added to my list of heroes and I wanted to share this particular article about them because it was also funny! But they also have a website:

www.teamhoyt.com

And here is the article:

http://sportsillustrated.cnn.com/vault/article/magazine/MAG1111767/index.htm

One of my first thoughts after reading the article, besides I want to push Lu in a race, was why have I never heard about these amazing men?! I have to hear about all sorts of stupid crap like what football player did something illegal, or which movie stars are getting married, but instead of all of that garbage, I wish awesome, inspiring, IMPORTANT stories like this were top news. It's possible I'm just the only one that hadn't heard about them too, I guess in which case, shame on me!