With a little help from her friends

Chad is my very best friend. There is no one I'd rather be on this journey with day in and day out besides him. We drive each other bonkers sometimes, but even then, I just always prefer to be with him. I have a few other very good, close friends that I cherish. I have many lovely acquaintances through real-life and through the Internet. People I knew long ago and haven't seen in many years, and people I have never met at all, but who understand the life I now live as Lucy's mom. I don't put a lot of stock in the number of friends that I have, or the frequency with which I get to spend time with them, but with the strength of the relationships I have, and the quality of the time we spend together.

People who interact with Lucy in her life run through a whole spectrum of quality, caring, closeness, and understanding. There are people who treat her like a baby, or like she doesn't understand them, even if I have told them she does. Some people treat her just like any other five year old. Many, many people love and admire her. She is lucky to have many cousins close by, ranging in age from younger than her to much older than her, who love her and include her as much as they can when they are together. And, she has some actual, good friends that we see when everyone's schedules permit for it. 

One such group of friends I have mentioned before in my blog, the Weber brothers, Miles, Chase, and Isaac, have become a very important part of Lucy's life over the few short years they have known each other. Back in early the spring we went on a little outing with them, and I wrote about it here:"Quality".

A few Saturday's ago we went out with them again to lunch at Eat N Park, and then to the Arboretum at Penn State and it was a truly wonderful time. 

At lunch, Miles, the oldest, asked Lu what her favorite color is. I helped her navigate to the colors page and then let her take her time to choose. Several minutes passed and we kept on with other conversations as we waited for Lu to choose. I looked over at Miles who would glance at Lu, and then back to everyone else, and I said she just needs to take her time sometimes, but she'll answer him when she's ready/able. He just nodded his head patiently and was simply more calm, and more accepting of these anomalies in communicating with Lu than even most adults ever are. I have noticed that the majority of people feel the need to fill the silence that comes from waiting for her with chatter that often is more distracting and makes her feel more pressure than just waiting patiently. The frequent refrain is, "What are you going to say Lucy? Tell us something!" This drives me crazy mainly because this is not how you would interact with a person who can speak with their mouth, so it's not appropriate for talking to Lucy either. Miles seems to understand this, even though he is only 8, and never talks to Lucy like this. While waiting, Chad suggested that Miles tell Lucy his favorite color and he said purple. Lucy eventually said her favorite color is also purple! 

We then went to the Arboretum which also has a nice children's garden and the kids clearly enjoyed themselves. There were little huts to go in to:

A stream for wading that Lu and I, and the boys took full advantage of:

 

A cave:

Some musical instruments:

A gigantic caterpillar:

And an amazing fountain at the end:

Unfortunately, between the caterpillar and the fountain Lu had a pretty big seizure and was half asleep for the rest of the time. The two younger boys, being younger, ran around having a blast most of the time. Miles (with the brown hair) would join them for awhile, and then come back to spend time with Lucy. The other boys love her too, but I can see clearly that Miles has a very special spot in his heart for Lucy. It seems to just be in his nature to slow down and try to understand what it means to really be her friend. For this I am so very grateful. I have known Erin, the boys' mom, since we were little. We have been friends for a very long time, and it really is not surprising that she and her husband have created such caring and tender children. Erin is kind, thoughtful, and loving, just like her boys. Chad, Lu, and I are looking forward to many more lovely days spent together. 

From the fountain to the car, which was quite a distance, this is what melted my heart with every step:

Just a true friend...

 

Ups and Downs

As the title suggests, we have had a lot of ups and downs lately. I have felt a little more down than up and didn't want to write a big downer post, but there have definitely been some bright spots in our days, so I'll share it all. 

Lu got a UTI. We have to cath her at the doctor's office to check for this. I have tried for several years to get successful samples here at home, but they are always contaminated and can take weeks to get. Just like all other motor activities, if I request that Lu try to pee, her body just seems to freeze up and she doesn't go until I take her off the potty and put her diaper back on. The doctor and nurse were terrified the first time they cathed her stating it might be very traumatic. I said, "Listen ladies, Lucy had four seizures yesterday. She has had a surgery to put a tube in her stomach. She's had three extended eegs, in addition to all she deals with daily...I think she'll be okay. She's tough. And it has to be done." And she is tough about it. She fusses a little, but it's not like a totoal freak out or anything. 

So, it was positive for a UTI, we did a round of antibiotics, and when she was retested after we knew the antibiotic would be done doing its work, she either still had it, or had it again. We started a stronger antibiotic and this past Monday we did a renal ultrasound to check her bladder and kidneys. Everything looked fine, except a tiny, insignificant amount of pee left in her bladder after voiding. So we don't know why it's not clearing up, but hopefully the antibiotic will work this time. 

We also saw Dr. Sasha a few Friday's ago. She said Lu is a star! (We know!) But, she also said that she is getting too heavy now and the heavier she is, the harder it will be for her body to manage itself. Dr. Loizides, the GI doctor we see in New York had already decreased her caloric intake by a whole can in the appointment we had before Dr. Sasha's so hopefully that will help. I knew they were going to say that. Dr. Sasha also urged us to maximize Lucy's use of her stander to help keep her heels stretched out, which I guiltily knew I had been slacking on. What is hard, and I imagine this is true for any parent, not just a special needs parent, is that there's always something you are missing. There is always something that isn't getting the amount of attention it needs. But then when you also add in all of the medical and physical needs that go with Rett Syndrome, it just can be so overwhelming sometimes. Lu totally rocks at communication! We practice walking every day. We work on reading, and art projects, and gardening, and whatever else we find time for, and then I realize I'm totally neglecting her need to use her stander. So...

And...

Also, because she has grown so much Dr. Sasha increased some of her meds. We are also trying to adjust her Depakote to try and not have any of the big seizures that put her to sleep afterward and recently she has had an increase in these kinds. She had two just this past Tuesday and then another on Wednesday. In addition to those, Lucy's body has just been in constant vibration mode all week. Unless she's asleep, her body has been so, so shaky and so much more out of control than usual. She has been emotional, and loud, and agitated. Two nights ago she woke up at 3:00am and could not fall back asleep until 8:00am. It is breaking my heart. I don't know what's causing it all, maybe the antibiotic, maybe discomfort from the UTI, maybe the med increases? I just don't know. I'm just doing my best to comfort her and keep her body as calm as we can. 

On the bright side though, Lu and I took a special trip to Barnes and Noble last Friday. It was Lucy's first time at an actual bookstore (the majority of Lucy's books are used from Goodwill, Kid to Kid, yard sales, and online). We went to a bookstore after Lucy said with her Tobii, "Let's go, shopping, home, leave" and when I asked her what she wanted to shop for she said, "book, story". When I asked her what she wanted a story about she said, "Viking, Abby Cadabby, traffic, bike, bus, accident" it's always best to have a plan when we go somewhere for shopping because Lu seems to get overwhelmed with all the choices, so I looked on the Barnes and Noble website for books about her chosen topics that it looked like they would have in the store. I then made her a page on her Tobii to look at the books and choose which ones she thought she might like to buy. So this way we made a shopping list for our trip. The good parts of the trip was Lu had a toasted ham and Brie sandwich that she was in love with from the Starbucks that's in the store, and of course it was great that she got to visit a new place. Some not so great parts of the trip were that we didn't find any of the books on our list, and Lu stated most of the time we were shopping that she was "impatient, impatient, frustrated, angry, anxious, impatient, impatient" etc. She even said "embarrassed" once which was perhaps because she was having a very loud day. Anyway, we found some good books even thought they weren't on her list and had a fun day out of the house. 

Lucy also got to fly a kite for the first time ever:

We went to a local greenhouse and chose flowers for her garden:

Together we chose Lobelia, Snapdragons, Portulaca, Petunias, and Salvia.

And look at her beautiful tomatoes! I'm not sure if I mentioned before but these plants are grown from seeds that I saved from two different heirloom tomatoes two summers ago. The bigger ones on the right are called "Mortgage lifter" and the smaller ones are "Black Zebra". 

We got a new wicker love seat so we can sit out on the front porch with Lu:

We started working on polite ways for Lucy to let people they need to talk to her like she is a big girl and not a baby, because sometimes that happens:

And Lu tried out a little chair we added to her garden area:

So, things have been good and bad around here. Or hard and easy? Or happy and sad? All of the above I guess. But through it all, we persevere, for this kid, because she is so tough and brave, wise, amazing, and patient, even though she says all the time that feels "impatient". She really sets the standard around here for how to just hang in there.

Tuesday morning after a huge seizure:

Tuesday afternoon when I asked her to smile for Daddy so he knew she was feeling better:

I used this quote once before, also in reference to Lucy, but I think I'd like to use it again. It's from the book The Road by Cormac McCarthy:

“What's the bravest thing you ever did?

He spat in the road a bloody phlegm. Getting up this morning, he said.” 

  

For the birthday girl

Today marks five years of life for Lucille May Shaffer. I can't even believe it! Chad has been saying all year that he can't believe she is going to be five and now she is. I often wish I could relive the moment I first saw her face. Since I had to have a c-section I was paralyzed from like the chest down or whatever, my arms were strapped down, and of course I was exhausted after 14 hours of fruitless laboring. But I remember looking over my left shoulder to see my sweet baby girl for the very first time. I very clearly remember a nurse announcing that she was a girl, because we didn't know yet. 

I also remember being extremely pregnant, so this was not long before Lu made her appearance, and Chad and I were driving home from shopping and eating somewhere. I pointed out how in a very short time the baby would be here and we would have all kinds of extra stuff to lug around with us. He was just kind of like it was no big deal, babies don't need much...little did we know just how much "stuff" this little lady would eventually need to go anywhere. And as she gets older, it seems like she just keeps needing more, instead of less. But I am thankful that the things she needs exist at all because they are instrumental in improving her health and quality of life.

The second half of this year has been especially hard (on my heart) since Lucy started having seizures. They are pretty well controlled with Depakote, and even when she does have a "big" one it is very small compared to how severe they could be. They last usually no more than a minute and are assumed to be causing no damage to her brain. However, when she started having them, I let a fear in that I had pretty much ignored up until that point. A fact that I had tried to not let control me is that a small percentage of children with Rett that die suddenly.  Rettsyndrome.org states:

"The factors most strongly associated with an increased risk of sudden unexplained death in RTT are uncontrolled seizures, swallowing difficulties and lack of mobility. Physical, occupational therapy, nutritional status or living arrangements made no difference in the incidence of sudden unexplained death. Other deaths have resulted from pneumonia."

And even though her seizures are controlled, I just began worrying anyway because Lucy also has difficulty swallowing and limited mobility. Both of these things are struggles we deal with constantly. I would by no means say the fear consumes me on a regular basis, but it definitely crosses my mind daily. And then sometimes it does take over and I am incapacitated by it for a very brief time, like an hour or two, and then I pull myself back together. But this is what seizures have brought to me. And so this year as we celebrated Lucy's birthday with a big party on Saturday and today with other special surprises and treats, I can't help but feel that every ounce of me celebrates especially that she has lived another year. Really, not a one of us is promised tomorrow and I realize that. I may not wake up in the morning. However, when a person also has a life-threatening condition, this just compounds the fear of what tomorrow may bring. 

Lucy and I have been gardening for some time now, usually in containers. And she asks to garden all the time, so for her birthday I had a vision of a raised garden bed that she could wheel up to in her wheelchair and have her very own garden. Chad and his dad built what I had in mind and we prepared it to be ready to show Lu on the day of her party. Lucy and I have been growing Brussels sprouts and two kinds of heirloom tomatoes from seed for a few months now and she finally got to plant them in her own garden!

She was so happy! We put her tomatoes in big pots on the ground and then we took a trip to the greenhouse yesterday to buy some flowers for her garden also. Her birthday party was also loosely garden "themed":

All of the kids got to plant a marigold and take it with them. Here is a picture of the party girl:

And here she is surrounded by some of her best buds:

And finally being sung to:

It was wonderful to have so many people come to celebrate Lucy with us! We are always grateful that we have so many friends and family that care for us and love us. Before the party Lu and I made some homemade seed paper to give to her guests as a thank you for coming and then I asked her if she could tell me a message she wanted to give to her guests. I specifically did not say to thank them, to see what she would say and here is the finished product of Lucy's message and seed paper gift:

Chad and I are so proud that she not only could create a message, but that she said thank you on her own with no prompting from me. We talk a lot about good manners and I am glad it's sinking in!

And since today is Lucy's actual birthday I asked her what she might want special for supper and this is what she said:

So that is what we will have of course! 

Even though I worry, and each day has its own struggles, I am always grateful for every day we have together. I am grateful that Chad can support us so I can stay home and always be with Lu. I can't believe that five years have passed already. Each day Lucy continues to grow and amaze us with her persistence and grace at tackling this life that is hers for better or for worse. 

Happy birthday big girl! 

#icandomorethanrequest

A hash tag has been created for sharing pictures and stories on Facebook of AAC users doing more than just making requests. I posted a picture of Lucy earlier this week and it was the first time I've ever even used a hash tag. I'm not even sure if that is supposed to be all one word or two, but I'm going to type it as two. The idea is that while it is undeniably valuable and amazing for Lucy to be able to make requests, there is more to her and her abilities in using her Tobii and PODD than to just ask for "more". Admittedly, I LOVE it when she says, "I want Tinkerbell doll" or when she asks for a specific snack or to play with her Barbies or My Little Ponies. It makes my heart soar to know what she wants and likes to play with. But she is capable of so much more! She makes statements, asks questions, makes demands, tells us (most of the time) when something is wrong, and can answer questions. She tells people she loves them and greets them and tells them goodbye.  And makes requests, all in one day!

Before starting this post I looked back through pictures to see what pictures I had of things Lucy has said recently and look what I found:

She asked this while her great-grandparents were on vacation for a few weeks. We usually see them at least once a week and she wondered when we were going to see them next.

This was at supper. She is always ready for bed at supper.

This was about a painting she had just finished!

And this was from yesterday after we talked about Chad getting her bike out of the basement for her first bike ride of the year! I asked if she was talking about her bike and she confirmed yes with a head nod. Dad had not forgotten:

I am always racking my brain to think of things she might want to say, and what other kids her age might want to talk about. Her and I are always reading a Disney Fairy chapter book and the way the fairies greet each other is to say, "Fly with you" instead of hello. So just this week I added that to a page of greetings I have made for her in her PODD on her Tobii, in addition to what was already there, and she was tickled. She even greeted me with it when I sat down to feed her lunch one day. 

I love the idea of showing the world everything people who use alternative means of communication are capable of. These devices and books, and everything else people use are not just a means for relaying their basic needs and wants. It is the key to letting their true selves out for everyone to see and know. It is a slow, delicate process, requiring a lot of patience, consistency, persistence, and belief in the AAC user. But as time goes on and you see just what your child, loved one, student, or patient are capable of, it makes every ounce of effort worth it! 

The Pity Smile

When we head out into the world, there is no missing us. I understand that. Not only is Lu in a wheelchair, but she has to have a chest harness in addition to the regular lap belt, or she would fall out. She needs to have her feet buckled in to keep them still, and safe. Then we add the big metal bar holding up a device that most people (oddly) assume is some sort of entertainment apparatus. Her PODD book generally hangs from the handle, and sometimes her feeding pump is clipped to the handle as well. And then don't forget her constantly flapping arms, the noises she makes as she holds her breath, and her sometimes very loud vocalizations. I get it. We are not going to go unnoticed when we venture out into public. What I wish could be different about our society in general, however, is the reactions other humans have to seeing a person with a disability.

I call it the "pity smile". I also completely understand that this type of reaction is 100% preferable to maybe a look of disgust, or annoyance, or hatefulness. I know. But what I wish others would understand is that WE (the entire community of people living with or caring for people with disabilities) do not want your pity. I have, for the most part, just quit even looking at people as we walk through crowded places, but then occasionally I accidentally do, like this past weekend. We had just finished a very nice lunch out with Chad's mom, and as Chad pushed Lu through the crowded restaurant to get to the exit, we could've been suffocated with the pity smiles. This is what I feel that those smiles say:

"Oh how sad." "Look at that poor little girl." "Look at that poor family. I wonder why that happened." And so on, and so forth. To people who have never experienced this type of reaction from others, you may think that I am being overly sensitive, making assumptions, or just being silly. But I promise you, I have seen these looks enough times throughout Lu's short life to recognize them for what they are.

Meanwhile, lunch was a success, Lu ate well, and we are all smiling and happy, so why feel sad for us? Believe me, no one, NO ONE, knows the sadness that comes with a disability as well as the people affected by it. But, what I wish would change about our society is that others could shift their thinking to view the successes, and strength, and possibilities of people with disabilities, instead of just feeling pity for them.  I don't want Lu to realize at some point, if she hasn't already, that people often look sad when they look at her, people that don't know her especially. Not everybody delivers the pity smile of course, but sometimes it can just be very overwhelming and frustrating. 

In general, the societal view of people with disabilities is that they are "less than." One of the biggest reasons that I write this blog is to share how Lu defies that view everyday, in every way we can manage. I write to present an alternative view of what life with a disability, or multiple disabilities can be, and that no one needs to feel sad for her or us. I would challenge our society to instead of focusing on the things they see that make them feel sad, to try and look past all of that to find the positives. Like, that even though it is clearly quite an endeavor, we are still out eating in a restaurant, or shopping for a new dolly, or going to the zoo. It is just what I wish for, and as long as we keep proving society's view wrong, maybe someday more people will look at us differently.

Anxiety in Rett Syndrome

When you look up Rett Syndrome online, or anywhere else, you will find "anxiety" in amongst the many severe symptoms of the condition. In the past three years I have let that float through my mind as a very vague issue that I didn't really feel we had encountered yet and I wasn't really able to think specifically about what Lucy might become anxious about. In general, I thought she might get anxious in perhaps social situations where she feels like she sticks out due to her differences. Maybe she might feel anxious about going new places, or making friends-the typical things kids and people in general are nervous about. I guess I just thought it might be worse because of everything else that comes with Rett Syndrome. However, over the past month or two, Lucy has clearly told us and shown us two very specific things that have started to make her feel a great deal of anxiety.

First, since her seizures have started, and she has started taking Depakote, her tremulousness has at least doubled, if not tripled in intensity and frequency. Her body shakes, twitches, jerks, and trembles. At times I need to swaddle her like a baby in a big blanket to help her body calm down. Most times though just a small weighted lap pad put over her arms and chest and tummy, or over her legs, and the use of soft arm braces can help her body to be still for a bit. A squeeze and a hug just isn't cutting it most of the time anymore. We tried adjusting one of her other meds to see if it helped decrease the movement, but it didn't, so it's just what she has to live with now. 

This has had a negative effect on both Lucy's ability to eat safely, and her stability during walking practice. When it comes to eating, sometimes I can barely get the food in her mouth, even though I am constantly stabilizing her chin gently with my hand. And when her mouth does manage to open, and she is still enough to let the food in, her mouth has seemed to resort back to not always knowing what to do with that food. Sometimes it just sits in there. But, what is most scary is that all of the excess movement also includes her tongue movements, and that, combined with breath holding has been making Lucy choke much more frequently on her food. When I say "choke" I don't mean we have had to give her the Heimlich yet, but she just coughs, and panics, and turns red. I have to get in there and scoop food out pretty regularly which is a risky endeavor for my fingers. But one night at supper after having such a choking episode, Lucy said with her Tobii: "understand, nervous" and we asked if she meant did we understand that she was nervous about eating and she said nodded "yes". 

A few days later at breakfast after she had choked again Lucy said: 

"Hate, nervous, cry, hate, eat"

So I scaffolded to her food pages and asked her to tell me what foods are easy for her to eat, what foods do not make her nervous, and here is the list she created:

A few notes on her list:

1.) All of those things are her favorites, and foods she tends to be most successful with, except maybe popcorn shrimp. She does love it, but it is not consistently "easy" for her to eat.

2.) "Candy" primarily refers to Reese cups. She LOVES them. 

3.) When she said, "everything, hot"  I just kind of acknowledged what she said and we moved on, but then when she said, "I need some help, food, cold" I knew that what she meant was that foods that are warm or hot are easier for her to eat than things that are too cold. She has never liked things that are too cold. No Popsicles, only ice cream with a hot sauce on it, even yogurt from the fridge is too cold sometimes. So she was stating that cold foods give her trouble, and that has always been 100% true.

4.) I know all her favorite foods and what is easiest for her, and even the "easy" foods are giving her trouble lately, but I wanted her to be able to have some control over the situation by helping to decide what she feels most comfortable eating. 

I like Lucy to try new things and she knows that, but I also told her that I will try even hard [than I already do] to just give her the foods that are easiest for her. So, the vagueness of Rett Syndrome-related anxiety has lessened in that now we know, in no uncertain terms because she told us, that Lucy is nervous about eating. Eating causes daily anxiety for her. 

She hasn't said yet that walking makes her nervous, but it is obvious that it has started to be very difficult for her, due to the tremulousness. Her stability has greatly decreased, as has her enthusiasm for working on walking. She has never been fussy or resistant to practicing standing and walking before, but lately there have been some tears, and a lot of protests on her part. However, on a few occasions she has actually requested to practice walking saying, "I'm telling you something, it's about now, choosing, walking" so we walk. But her anxiety is still present, she is just choosing to try and work through it. I can tell she is afraid she's going to fall, even though I am holding onto her, and the shaking makes the already arduous task of putting one foot in front of another just that much more harrowing. 

When I was little I had some pretty bizarre and irrational fears such as we were going to drown when we flushed the toilets, or the car doors, even if they were locked, were going to fly open while we drove down the road. They were just crazy little kid fears that were not really going to happen. But Lucy has to be afraid of EATING and WALKING, things no one should ever have to worry about. Shouldn't we all just be able to eat and walk without a second thought? Of course we should, but she can't. So now I know two very specific causes for anxiety in people with Rett Syndrome. Now I know.

Three little words...

Lu had a cold again for three weeks and it was miserable. In the middle of the cold was her Daddy's birthday. Throughout the day I modeled for her in her PODD on her Tobii how she could wish him a happy birthday when he came home from work. She slept most of the day and just didn't feel well, so I wasn't sure she would be up to wishing him anything. Well, when we sat down to supper, I reminded her in a whisper what we had practiced. She said with her Tobii that she wanted to use her book- her paper PODD book. As I navigated through the book with her, after each choice she made, she would turn and look directly at her daddy. Her message was, "I love you"!  Chad and I both teared up for the obvious reasons, but also because she has very seldomly said this to anyone. We tell her we love her a thousand times a day of course, but I never ask her to tell me that she loves me, or ask her if she loves me. I know she does, and I know she will tell me when she is ready. And here she was ready to give her Daddy the best birthday present in the world! 

What was also wonderful about the whole exchange was that she didn't do what we had practiced all day- she wished Chad a happy birthday in her own way, and I love that about her so much! Not only that she has the spirit to do things in her own special way, but that she has the knowledge and ability to express herself however she chooses. When we are talking and I am asking her a question about something, I never worry that she is just answering what she thinks I want to hear, because she just doesn't do that. She wants us to know what she thinks and feels- her own genuine opinions.

So, since Chad's birthday, Lu has been very generous with her "I love you" messages. About a week later she told my mom and I that she loved us while we were at the table feeding her lunch. Then one day when just Chad was home with her she said:

And then one morning at breakfast she told me she loved me twice within the meal! 

Then at supper a few nights ago she said this to me:

Which is great, because I might tend to be a little silly.

So, without asking, with no pressure, Lu has finally started telling us she loves us! With both her book and her Tobii, just whenever she feels like it! It is amazing and I am so grateful that she has the ability to express her love for the people around her.