February 27, 2012

Tomorrow will be three years since we found out Lu has Rett Syndrome. When Dr. Coffman called and told me the news, all I said was, "Okay." And he said, "No, it's not okay. You don't have to say that." I feel like I have a weird thing about not being able to react in the way people expect me to in the moment that they expect it, and so what else was I going to say but, "Okay." And although I was floored by what he was saying, and overwhelmed, and devastated, and all of those things, I think I also meant, "Okay...now what? What do we do to help her? What's next?" But that was the difference between us and Dr. Coffman; he didn't believe anything was next. I guess he essentially believed that he had just called me to break the news to me that my life was ruined, and then to invite us out for an appointment where he would provide details on exactly how it was ruined. Screw you Dr. Coffman. Screw you.

Now, I firmly believe that if I am going to write a blog about caring for a child with Rett Syndrome it is my absolute duty to share the good, the bad, and the ugly, and I think I do. I have written about many difficulties we face each day. I have written about how hard of a time I have at times just contending with the symptoms of the condition, and all other sorts of not so cheery things, but I do my best to also share the wonderful, amazing, breathtaking aspects of being Lucy's momma...because those things far outweigh the dreary things. What would doomsday Dr. Coffman think about that? We have found more good than bad in the aftermath of receiving this diagnosis. Our life is different, and hard a lot of the time, but most definitely not ruined, not even close. 

This was taken exactly three years ago today, the day before her diagnosis:

And here she is today, a big, beautiful, almost-five-year old girl! 

And here is a Valentine she made with her OT. She gave it to her Daddy.  Oh, and used her Tobii to spell her name herself and tell the OT what order to put the letters in!

And here she is choosing flowers for our garden this summer. Some of her choices include a white Bleeding Heart, a bright orange coneflower, and some "Strawberry Candy" colored day lilies. She used just her yes and no head movements to make those choices. 

And just one more: here she is playing her tambourine at the supper table, because she asked to.

So, Lucy is spelling, choosing, asking, playing music, and still smiling. I have already said many times before that I will never, ever, ever forgive Dr. Coffman for the out-dated, negative, and hopeless information that he gave to us, and I will certainly never ever forget it. Here we are a mere three years later and Lucy has already surpassed what he indicated we should expect from her life a zillion times over. And again I say, it's only been three years! What will the next three years bring? And the three after that? And after that? All I have to say is, look out world, because here she comes!

My Baby Asparagus Patch or "Being Zen"

Sometimes people, other parents particularly, will ask me what we have done to assist Lu in continually making progress as a competent alternative communicator.  I generally share a summary of these two blog posts that I have written on that exact topic:

Just Do It
The Hard Way

I often get a feeling though, that my responses are disappointing. Perhaps others think there are some magic phrases we use that make Lu communicate successfully. Like there is some secret ingredient to her success, a silver bullet to just make it happen. But there isn't. We just do our very best to maintain consistency, make sure others do the same, and just do what we were taught. Over and over I say, "It is not work, it is her voice", "no pressure", and of course, "Be Zen". These are not my original ideas as I have made clear many times, this is what we were taught at the PODD training. This is why she succeeds. 

This week I have been thinking especially about the mountainous task of "Being Zen".  I truly have no actual idea about what "zen" means in the context of Buddhism or anything like that. I just understand that Linda said Gayle wants people to "Be Zen" in terms of staying calm about the progression of the PODD and not to worry about it ever being a perfect process. That I get. When I was thinking about this earlier in the week, a passage from one of my favorite books popped into my head. From the book, "Animal, Vegetable, Miracle" by Barbara Kingsolver:

I included the whole passage for context, but I was mostly thinking of the part that says, "A too-young plant gets discouraged when you whack off its every attempt to send up new shoots in the spring, abuse that will make the plant sink into vegetable despair and die."  Bear with me while I make these connections. To be Zen, in reference to using the PODD means not getting worked up when things don't go perfectly. We as the smart-partners are not always going to read the communicator's signals correctly. We are not always going to model eloquently, or at the right level, or in the necessary amount. We need to be gentle with ourselves, this is a new language to us too, after all. But even more important than being gentle with ourselves, we need to be beyond gentle with our children. Not every single thing Lu says with her PODD makes sense. I don't always understand her and even after trying to clarify with her, I still might not understand what she is trying to say, and that's ok. Like a gardener would do with a tender baby asparagus, I let her be. I don't insist that she grow too quickly so that she can become what I think or want her to be.  Yes, I want her to be able to fluently communicate right now, or yesterday for that matter. But the secret is to not squash her tender shoots.

No matter what Lu is saying, regardless of whether it seems confusing, or whether she is saying the same thing over and over, I just go with it. I comment, ask questions, and generally just validate the fact that she is communicating with me. Just because it might not be how I think she should be communicating, I have never tried to "whack off her attempts at sending up new shoots." Even when she is just exploring, that's essentially what she is doing; putting her feelers out, trying out her linguistic legs, and then, most importantly, waiting to see how the world responds to her. I think she is successful because our response has always been to respond with support, and patience, and to let her language grow without being too hasty to critique it, or trim it.

Nearly three years ago a doctor basically told us Lucy would never do anything, and so to me each and every word that she says, whether it has a clear intent or not, is amazing. Her body fails her while her mind perseveres. In the midst of seizures, tremors, breath holding, and ceaseless hand flapping, Lu might say, "I want, Barbies" or "I don't like this, crazy" or "Let's go, visit, Bernie, Dr. Sasha, Pappy, Tammy Sue, Dr. Sasha, Dr. Sasha, Dr. Sasha" and it all matters to me. Sometimes she goes to the animals page and says, "pet, baby, cat, Finn, the fish, the fish, the fish, pet bed, etc" and I don't know if that means anything at all, but I keep talking to her about what she's saying. And then other times, like one morning this week, she might say, "I think it's, cool, favorite, something to eat or drink, we, toast, hot, crunchy" . She was telling me that the toast I made for her with cream cheese and jelly is her favorite and then described it. And yesterday she said, "I don't like this, silly, angry, angry, pain, on, my, thigh". So I checked her thighs and legs and in the end she said it was actually her shin that was hurting. Also this week she said, "let's go, picinic, kfc" with her Tobii, and with her book she said, "thought, fun, exercise" in reference to playing in the snow. But in the same week, she has probably gone to the health section of the PODD on her Tobii and made a long string of words about appointments, doctors, slings, medicines, etc, with no clear intent, but just to explore. She likes to do the same in the transportation section, and the weather section, but that's how she'll know where words are when she is really looking for them. It's fine. It doesn't mean she is failing. 

I think I've said this before, and I'll say it again now, and I'm sure I'll repeat it in the future, but I don't believe that Lu is an anomaly. I believe all girls with Rett can communicate like she does, it just comes down to how she is taught, the support she receives, and the frame of mind from her support system. The assumption that she CAN do it, in addition to the belief that communication is crucial for children who cannot communicate in the traditional way are both ways of thinking that are indespensible on this journey. It isn't enough for our daughters to have access to communication just sometimes. And it's not going to work if we try to force their progress into a shape that we want instead of letting it just be what it is, all the while modeling proper language that they will inevitably pick up on when they are ready. We just need to try our very best to be patient, and positive, and confident in the process. With that support at their backs, our daughters will talk to us when they are ready. 

Sled Riding!

Yesterday I ran up to the little local store and the lady who owns it is so sweet and always asks about Lu. Yesterday she said, "What's new?" And wow, was I delighted to say, "Nothing!" Life has been pretty uneventful for the past few weeks and it is a relief! All I had to report was that we had ventured out to try sled riding earlier in the day, for the first time in almost four years and it was fun! It was exhausting, and hilarious, but super fun! We just have a regular sled that Lu could not sit up in on her own, so Chad, much like a sled dog, pulled us around the yard. He was a real Hulk about it too! Lu and I were pretty impressed. And then we made a path down a slight incline and went for some "downhill" rides. Lu and I even crashed once and she seemed to think it was okay and even a little funny! Finn had a fun time also dragging his leash around, unencumbered by me bossing him around. 

Here's some pictures from the good times:

But then of course didn't Lu wake up sounding a teeny bit stuffy this morning. Hopefully it's nothing. I am fine with nothing being new around here for awhile longer!

What might have been

I let some sadnesses simmer pretty close to the surface, but one sadness that I keep buried deep, deep down is my heartbreak at not having any more babies. I know, it's not like it's a rule that we couldn't, but it's just a feeling in my gut that tells me I might not be able to handle it emotionally.  But man, I really wish Lu had a brother or a sister sometimes.

A few days ago a Facebook friend of mine whose daughter has Rett posted a picture of her daughter and her daughter's twin brother playing dress up and just looking silly and adorable. That night I dreamt that I was searching for some definitive answer regarding the safe amount of weight a pregnant woman can lift. In my dream I just kept thinking, "Is it 42 pounds? Could it be?" Like that was the very most important thing that would need to be sorted out if we were to have another baby.

And then yesterday, I started feeling very sad that Lu doesn't have someone to play with all the time...someone more fun than her adult parents I mean. I think that missing out on typical play and pretend is one thing that I have never been able to reconcile with. We do our best to play and be fun, but it simply is not the same as Lu being able to use her hands and manipulate her toys. Or use her voice to make up stories and voices, and exercise her imagination out loud and physically. It's just not the same and there is no piece of equipment or adaptation to make it truly authentic. So, last night, out of nowhere, right before bed I was consumed with regret and grief that we have not created a sibling for Lu. My tears began as sadness for Lu and despair that she might be sad, or bored, or missing out. Now, before any anti-homeschoolers jump in with protests that she could play with kids at school, it just isn't that simple. When children that love her and want to play with her are here, even they don't know what to do and seldom include her. She can't follow after them as they scoot around, and she can't do what they do without me helping her, or showing THEM how to help her. In the end it all feels very awkward and forced, and maybe not a ton of fun for anyone.

But...if she had had a sibling that knew her and loved her, they would've known how to play with her and just "be" with her, like we do.  However, in the almost five years since Lu was born, it has simply never felt like we were emotionally, mentally, or logistically prepared for another child. Nobody's choices are right or wrong. I'm happy for people who have been braver than us and made babies after their child with Rett was born. The obvious reason for not doing it that I think Chad and I agree on is just HOW would it work? How?! I don't know how I would even manage to be pregnant and care for Lucy let alone what would happen after a baby was born. I talk about her needs all of the time, but unless you spend a day caring for her, a person cannot truly understand how all-encompassing her care is. Nothing happens in her day without me (or Chad) doing it for her. How on earth would I also take care of a baby, who would also need me for every single thing that happens to it for at least a few years? 

Awhile back I mentioned to my friend, Ann, that we were contemplating the possibility of another baby someday and she said such a sweet and kind thing. She said, "Well, I'm sure that if it's something you are thinking about then you will find a way to make it happen." Yeah, I probably would. I would figure out how to care for two children. So, like the layers of an onion, I'm peeling back the reasons why I won't ever have anymore babies and here is probably the truest, most critical reason: it terrifies me. The prospect of creating another human, growing it inside of me, giving birth to it, and thinking everything is fine just about sends me into a panic attack. However, at nearly the same time I feel the terror, I long for the opportunity to have the whole experience just one more time. Now, not to sound sexist, but I feel like only other women and mothers can understand what I mean when I say that the description of "longing for" the chance to be pregnant again is a gross understatement. It is so, so much more than a longing. It is more like a heartbreaking, gut wrenching, primal feeling that brings tears to my eyes instantly which can easily turn into sobs if I let them. I guess part of it is logically my "biological clock" and the fact that I am nearly 34, but that's not all of it. 

I just want to create another human as amazingly awesome and perfect as Lu, and in turn a sibling for Lu to love, and who will love her like no other child could. But...when I think of being pregnant, one of my most vivid memories of Lu in my belly is of sitting on the couch of a family my partner Joe and I were working with when I was a Family-based therapist, and everybody in the room could see her moving around in there. As I write this I wonder if it was the day my water broke and that's why I remember it so clearly, but then what I think is how I just might not even be able to contemplate what it would be like to have another baby in there, and watch it move around, but this time be terrified that something is happening in there, unbeknownst to anyone, that will make that baby's life hard too. Chances are very slim, yes I know! I know better than anyone who might make that statement to me, but I also know of families where things did happen twice. Where a second baby also had a random condition caused by a spontaneous mutation in a chromosome. It happens. And when you are a family that thought, just like anyone else, that surely everything would be fine, and then it wasn't, it's a whole hell of a lot harder to believe that it certainly couldn't happen to you again...because it could. And honestly, it's not the prospect of having another child with special needs that terrifies me, we are pretty adept at that part. It's the sorrow, and the grief, and a second set of broken dreams for a child that is going to miss out on so many of the typical things humans get to experience in life that I fear the most. These are heavy things to carry around, and I just don't think I could carry anymore. 

But, the fact of the matter is, in spite of all of this, I still get into a sadness every once in awhile about the baby I wish we had created, or the baby I wish we still were going to create. Chad and I love being parents. Lucy is our world, and the light of our life. I just assume another Baby Shaffer would only make our lives even more full of love and happiness, but the confidence in procreation that people take for granted each day has been stolen from me. Everyday, millions of women find out they are pregnant and they instantly assume everything will be fine. I have lost that faith, and I feel robbed. 

I know this was long, and sad, and gloomy, and I don't even care if nobody reads it, or if anybody cares for it. It just made me feel better to try to express the agonizing conflict I have in my heart about making babies. I'll get past this sadness, like I have in the past, and I'll cram it down deep inside of me, and hold it there firmly, until something else comes along that loosens my grasp on it and let's it float back up to the surface.

Still recovering!

So, Lucy is still not 100% better. She's working hard on it though. Last Sunday she woke up with her cough worse again and a fever of 102.7. When she went to bed the night before she had had a great day and we thought for sure it would all be over when she woke up, but it wasn't. So, we took her back to the doctor on Sunday afternoon, and he said it was time for an antibiotic. Lu had only had two other antibiotics in her life so far, one for the beginnings of an ear infection, and one for and infected toe nail and she has never had any trouble with taking them. Well this time, on Augmentin, she developed severe, nearly constant diarrhea. It started Tuesday morning, and just yesterday started to subside. I quit giving it to her Thursday morning, before the doctor said to quit because I just couldn't bring myself to make her take it anymore. Her bum was so, so red and sore, but after 24 hours of no diarrhea it is finally starting to look a little better. She still is just a tiny bit stuffy, and has a little cough, but I think she is hopefully almost well. 

Neither Chad or I managed to get her sickness in all of this time, until Friday. My throat started hurting, and I just have a little cold, and have been trying to rest and get lots of vitamin C, so I'll be fine. Lu even went up to visit Grammy and Pappy for a couple of hours Sunday afternoon while I napped and Chad tried to get some work done. So, Lu has been sick since Christmas Eve morning, and she is finally, really, hopefully on the mend. Hopefully!

At supper on Saturday night Lu said, "I want, Sesame Street figures", so I obliged her since she was actually feeling better enough to request toys. And then this is what she said, 

In case it's too hard to see, she said, "I think it's, fun" and then added "see you later" to the end for some reason.

Here is also a picture of her from last night showing off her kitty cat socks to her Daddy and feeling pretty good:

And then a final bit of good news and evidence that she's feeling a bit better, today at Lunch, Lu said she needed to use the potty and so I took her back and she had a normal poop and even peed! She was pleased with herself and I was so, so, so happy that it wasn't diarrhea. So, hopefully this is coming to an end and she'll be 100% back to herself. 

A Cliche

 "It could be worse."  "Somebody else always has it worse than you." 

I think it is so unfortunate that these two statements, essentially just different versions of the same sentiment, have become a cliche. Regardless of their cliche status, I say one or both of them to myself almost daily. Rett Syndrome is bad, I am not denying that, but it could be worse. Just as far as Rett Syndrome goes, Lu's seizures could be much, MUCH more severe. She could be in the hospital with pneumonia all the time, or have scoliosis, or hip problems, or not be able to walk at all. She could be restricted from eating anything by mouth, instead of still getting to eat three meals a day in addition to her tube feeds. She could be one of the many girls who passed away this year...but she's not. And remembering that as often as possible is what helps me get through most days. 

Regardless of how bad a day might get, I always try to remind myself of how much worse off we could be. I mean, we have a warm house to live in, we can pay our bills, we have plenty of food to eat, and clothes to wear, and we have each other. I know I'm probably sounding like a sappy cliche right now, but really, it's just true. I know it is easy to get caught up in the small details of life. I know that sometimes those details can become big, even if they aren't. And I know that people can get wrapped up in agony over small things that it would be better if they just let go of. 

The secret though, to being able to shed the cliche of these statements, is to be able to tell them to yourself and mean it. What never, ever works is telling it to someone else...not ever. It's just not helpful to say to someone, "It could be worse." It comes off as basically saying, "Quit your whining." And even if that is the message you want to send, they won't quit, and they will get mad at you. People don't ever assure Chad and I that it could worse, because I see in their eyes that they think we got the worst hand they can imagine. However, I want to very often remind people of how much worse their lives could be, when they are frustrated about insignificant things, or even complaining about the typicalness of their children.

I have heard parents wish for the days when they could simply set their children down and they couldn't move from that spot. I've heard people complain about how much their children talk. I have heard any number of similar gripes come out of other parents' mouths, but I never say, "It could be worse." That will invite a look of pity, shame, embarrassment, maybe annoyance. But what I wish is that more people in the world would just remember on their own how good they've got it. 

There are people who are starving, living on the streets, or in war zones. There are people who have no one to love them, or are desperately addicted to drugs. There are parents whose child has died, or is dying as you read this. Do I wish life was different for Lu, and for us? Yep, I do. And sometimes, as I have mentioned any number of times, I just break down and have a tantrum about it. But then I pull myself back together and get on with it, because, in spite of stupid Rett Syndrome, we have a great life. And I have a hunch, that in spite of whatever complaint many others might have about their life, that they just might have it pretty good too.  

Some things I have said over the past year that I never in a million years would've imagined I would say when we decided to make Lu include:

"Don't forget to get Lu's Depakote."

"Can you bring the pulse ox in when you come?"

"Lu had a big seizure today."

"We have an appointment to get Lu's new braces tomorrow." 

"Lucy is getting a feeding tube."

But guess what, when we got her diagnosis nearly three years ago, there were a lot of things then that I believed I would never get to say, such as:

"Guess what Lu said today!"

"Lucy walked across the living room just holding onto my hands."

"Lucy went for a bike ride this morning."

"Look at the painting Lu made!"

"We are working on learning to read."

We have a lot to be thankful for. And here is a picture that I have shared before from last New Year's Day:

And here she is now, plump and healthy:

Life could just be so much worse, and I am grateful that it is not.

I hope everyone has a Happy New Year!

A little on the mend

Lu has still slept A LOT today, but she has had brief periods of time of being awake and smiling. We all even ate breakfast and lunch at the table together and she ate quite a bit! This morning as we were getting her in her chair, Chad and I were commenting on how she had a little color in her cheeks and we told her she was looking more like herself, and a few minutes later this is what she said:

And here are some photos that her Daddy couldn't quit taking of her a few hours later because we are just so happy to see her smiling:

So, things are looking up here. Thank goodness for breathing treatments, and modern-day medicines!