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!  

"It sounds a little wet"

Lu woke up on Christmas Eve morning sounding phlegmy. She had her morning feed and napped, and when she woke up she had the "sick eyes" and was getting pale. She rested throughout the day, and we tried to enjoy a little gathering we have at my Nanny and Pappy's house at supper time, but she just couldn't handle being awake anymore. When I took her temperature before bed it was 102.2. She coughed and gagged and fussed all night long. She slept for pretty much all of Christmas Day, and by the evening her breathing had become rapid and shallow and very, very loud from the gunk trapped in her throat. We do not have a suction machine and she just couldn't seem to get the junk out of her throat. When her fever meds wore off, her temp was back up to 102.9 and then even on the medicine her fever was not going down a whole lot.

So, around 1:15am, Chad called the after hours doctor line through Grisinger and told the nurse Lu's symptoms and she said we had better go to the ER. When the ER doctor first listened to Lu's lungs she said, "They sound a little wet." My first instinct was to shout, "How dare you!" Let me add a little back story here. I have mentioned many times that pneumonia is a very common and very serious complication of Rett Syndrome. Children with Rett get it a lot. I have seen many girls spend weeks in the hospital trying to recover from pneumonia. In addition to the usual ways people get pneumonia, children with Rett can also get aspiration pneumonia from aspirating on their food or drink. So, any time in the past that Lu has been coughing, phlegmy, and had any kind of fever, I take her to the doctor...just to make sure. And each and every time the doctor has said her lungs sound good. And then this morning they sounded "a little wet". However, fortunately, after a lung x-Ray it was determined that she did not appear to have any pneumonia. The doctor did say though that aspiration pneumonia can take a little longer to show up, so we followed up with the pediatrician this afternoon. She said she sounded barely wheezy at all now. 

While at the hospital during the night, Lu had two breathing treatments of albuterol, more Tylenol, a steroid, and swabs for the flu. The nurse also was able to suction a bunch of junk from the back of her throat. But, she is still full of snot. So we left with a prescription for a nebulizer to use at home. We have  done two treatments on our own and we are staggering Advil and Tylenol to keep her temperature down. 

Here is what Lu has done for the past two and a half days:

And here is what she wanted to express while at the doctor appointment this afternoon:

So she doesn't have pneumonia and we are so, so, so very glad for that. But I'll tell you what, when that woman said her lungs sounded "a little bit wet" I felt like she had just slapped me across the face. Or socked me in the gut, or tore my heart right from my chest. It was difficult to accept the facts when we determined that Lu needed a feeding tube, but Rett Syndrome just takes control of her mouth and her body, and no matter what I tried to do to stop her from losing weight, it just didn't help. And seizures, well, there just isn't much I can do about those either. If they are going to happen, they will happen, and our only line of defense at this point is medication. But getting sick, getting "wet" sounding lungs, I have a whole heck of a lot more control over that. And so I might be a bit of a zealot about trying to keep Lu from getting sick. I don't send her to school. I don't let therapists come when they are even a little sick. But I know I can only do so much and we still certainly go out to all kinds of public places and have people over...I don't keep her in a bubble (yet). 

The plan now is to just get the sickness out of her before it settles in and tries to become pneumonia, or an ear infection, or whatever else it might want terrorize her with. She's just so pale and lethargic. I miss her. I miss her being awake and talking to us and smiling. I'm a little sad that she slept through Christmas. I am mostly sad because she and I worked really hard for months on homemade presents for everyone and she missed them being opened. She always gets pretty excited to give gifts and see people get excited about them.  There's always next year. 

Anyway, Chad and I had about two hours of sleep last night and some snippets of cat naps here and there throughout the day, so we are exhausted. I'll post a healthy picture when Lu gets better, which will hopefully be soon!

Confirmation

So, about the shaking episodes... Dr.  Sasha increased the depakote a second time and I kept a log for two weeks to see if there was improvement. She only had the episodes on 5 out of 15 days, whereas the first update I provided, before the second increase, was that she had episodes on 5 out of 9 days. So Dr. Sasha said to increase it just a little more. She said the medicine is helping. I asked if we were to assume then that they are in fact seizures, and she said, "Right." So, that's that then. Lucy is in fact having seizures. The depakote would not help if they were not seizures. 

Other big issues on our list of symptoms to try avoiding to whatever extent possible is pneumonia and scoliosis. Both of these have more of a possibility of being avoided, whereas seizures, and feeding issues, apraxia, just manifest from the disease. I think Lu has been (mildly) sick twice since leaving school almost a year ago, so we are doing well in the battle against pneumonia. As for scoliosis, we do our best to have her positioned straight, but comfortably as much as possible. No curvature has been detected in her spine so far. 

When I look at pictures like this one: 

I can't help but think back to my oblivious frame of mind at this time in Lu's life, and feel so sad. I guess maybe we did have those 8-9 months where we thought life was going to be run of the mill for her and us, but I can almost never look at it that way. I look at it more like we were fools back then to think that life was going to be easy, or fair.  Even up until a few months ago we thought maybe Lu could be in the small percentage of girls who don't have seizures. And two years ago we thought hopefully that she might also be able to continue to eat on her own. And when she was a year old we assumed she would learn to walk. And on September 27, 2009, when I found out I was pregnant, we never, ever assumed that our daughter would have a rare condition that was going to steal so many things from her. It's hard to not take things for granted when you have no reason not to. 

Speaking of assumptions, I keep forgetting to mention some assumptions that Chad and I would not allow to be made in these past months of trying to determine what was happening with Lu. First we went to the pediatrician who of course said the could be seizures, but he would talk to a neurologist in Danville. He spoke to the neuro on call, who has never even met Lu, and he said that he didn't even need to see the videos we had to be certain that they were seizures, since she has Rett Syndrome. Well, that is malarkey, and a dangerous assumption to make solely based on her diagnosis. As I have said, there are breath holding spells, and "Rett episodes" and all types of other "events" that can happen in girls with Rett besides just seizures. Unfortunately, Dr. Sasha was out of the country for the month when these first began, so we could not consult her. 

When we went to an appointment in Danville with the neurologist that has seen Lu in the past, he too was going to instantly assume they were seizures and just start her on medicine. We said, no, we thought an extended EEG should be done to try and determine if they were seizures. As I have mentioned, none were apparently seen during the EEG. However, when we did finally get up to see Dr. Sasha, she said they just could've missed it since Lucy's brain has abnormal seizure activity all the time. She still wasn't sure, but we trusted her decision to try the medicine because she is a specialist and we always have comete faith in her to do what's right for Lu. And now we know for sure.  But, I don't believe it is in anyone's best interest when doctors just make assumptions based on a minimal amount of information and say, "Let's throw medicine at it!" I mean, the arrogance of that first doctor to say that he didn't even need to see the video! Rett Syndrome is a diagnosis, but it is not a mold that all girls came out of. Everyone is different. 

I guess my point is, don't let doctors push you around! Not about your own health, or your child's health. I think they do that a lot, to a lot of people, because they think they need to seem important, like they are the alpha dogs and we are all just mongrels in their pack.  And I guess another point I tried to make is do your best to not take what you have in life for granted. Back when Lu was 9 months old, the new pediatrician we went to see because we had just moved here encouraged me to NOT have her evaluated by Early Intervention, even though she was not crawling, pushing up on her arms, or bearing any weight through her legs. That was my first experience with saying to myself, "He might be the doctor, but he is not the alpha dog of me and I'll do whatever I think is best for my baby!" And I did have her evaluated, and at that time she (oddly) didn't qualify, but 3 months later, when she still had made no progress, she did. And that was also the beginning of learning what it does really mean to not just be able to assume and take for granted that things in life will go your way. 

Rett Syndrome is a bully. It is the type of bully that is relentless. Chad and I are the type of people who stand up to bullies. And Rett Syndrome is the type of bully who just when you think you have fought hard enough to keep it at bay for awhile,  it sneaks around a corner and kicks you in the face. I have said more than anyone over these last months that I believed Lu's episodes were seizures, but I still had a really hard time getting the actual confirmation yesterday. 

Today's a new day, I'll get over it, to whatever extent a parent gets over these types of things.  It just makes for one more thing to worry about when we go somewhere. It's just one more reason why no one besides my mom and dad can take care of Lu if we want to go on a date, because there is just too much to know and do for people who don't see her everyday. It's just one more thing. 

The Chill Out Chair

 I have mentioned in the past the plethora of chairs that we have for Lu in an effort for her to be: comfortable, upright, or laying down, not falling over,  able to sit on the floor, etc.  A chair also needs to either have a built in way for her to not fall out (ie. straps or a harness), or she needs to be able to sink down into it. It is just extremely hard to find the right seat for her. Her big bean bag chair is great for laying down and napping, but not great for letting her sit upright and engage with the world around her. Her wheelchair is better for times like that, but if she doesn't have her braces on and her feet strapped into the foot plates, then she slides down in her seat. Sometimes she likes to sit on the chaise, but she falls over to the side a lot.  And, when Lucy falls over, slides down, wants to sit up, or lay down, or has any other way she might want to alter her seating position, she just simply cannot. She just can't move her body like that. Therefore, I spend A LOT of time all day long repositioning her. Sliding her up, propping her up, sitting her back up, helping her lay down, it never ends. She doesn't even move herself much in her sleep anymore. Every night before I go to bed I turn her over so she isn't laying on one side, in the same position all night.

So, in what feels like a never-ending search for the "best" chair for Lu to relax comfortably, but still be upright, I discovered the "Chill Out Chair" made by a company called Freedom Concepts, last year. That's right, I have been longing for this chair for Lu for over a year. While it is considered a "special needs" item, it is not necessarily a piece of "durable medical equipment", and therefore it is not covered by insurance, and because it is a "special needs" chair, it has a very high price tag, because that is always the case. Hence, the year of coveting it, but not ever buying it.  

But, with the help of a hoagie sale spearheaded by our family and participated in by many more family members, friends, and acquaintances, we were finally able to buy Lu her very own Chill Out Chair!  And, I contacted the representative for PA and he had a few demo chairs that he offered to sell me for $500 less than a brand new one! I was ecstatic! So, for anyone else out there who also struggles daily to find a better position for their child or loved one (they come in sizes for everyone), I highly recommend a Chill Out Chair. I recommend you contact your state's rep and see if there are any demo chairs available, if you don't mind that. The cover on ours is actually antibacterial and completely machine washable, plus it matches our living room which was pretty lucky! So it's perfect! And if a person would prefer to buy a new one, they come in dozens of different fabrics and colors so they can fit right in with the furniture you already have. 

I don't know if in the pictures you can see what is so special about this chair, but it has a v-shape design that Lu sits down into and the entire thing is made of very high quality furniture foam. So, she sinks down into it enough that she won't fall out, and the foam is like a hug to her, which besides helping her sink in more, it is also like a hug for her, which helps her body stay still. 

And she can even nap in it!

So, I am clearly very excited about finally being able to get this for Lucy. She now has a safe and comfortable seat for relaxing, learning, watching tv, napping, whatever she wants or needs to do! As usual, we couldn't have done it without the never-ending support and love of our family and friends. 

Here is a link to the Chill Out Chair website for anyone interested in checking them out:

http://chill-outchair.com