Sunday, November 27, 2011

My bad behavior

I can feed Lucy a zillion meals and keep my cool, but then eventually the challenges that are involved get to me and I let my frustration out. Not necessarily aimed at her...mostly Chad I guess. Feeding Lucy a meal involves a lot of sopping up giant puddles of liquid that she has lost from her cup, and then running to the sink repeatedly to rinse the sloppy rag. Then we are trying to learn to use utensils, which generally goes well, but I know that "well" is a subjective term. She is rocking the fork; after we load it for her she can get it to her mouth and most of the time gets the food off. Sometimes she just let's it dangle in her mouth until it falls off or as she's pulling it out her arm jerks and she wails it on the floor. The spoon work is much messier and almost entirely hand-over-hand with Lucy often dipping her entire hand into the bowl or throwing the spoon on the floor. What makes it hardest for her, I think, is that she still doesn't have total control over her arms and hands, and fingers and this hinders her progress at times. So I know this and I try my very best to be patient and teach her how to use utensils in ways that I think she can learn best, but this morning her suction cup bowl would not stick to her tray and it was just the last straw for me! Every time she would take her spoon away she would either drop her fingers in her cereal or tip it over and after trying and trying to make it stick I just gave up and fed her the cereal and felt like a big failure the whole time. Stupid frickin' suction cups! Why do they even exist? They don't work for anything! And then I made her a smoothie which she loved, but slopped all over her face, through her hair...basically just all over everything. And then I was a bitch to Chad because I was so frustrated.
I find it hard to be able to share the privilege of being frustrated about things that are frustrating because I am primarily responsible for Lucy's care, in that I am home all day with her, and I am the leading expert on her every move. But it's not like Chad doesn't help take care of her because I know that he probably helps a whole ton more than what some other dads do and I am super grateful for that. So then when I go into these pouty fits where I think I should get to have a monopoly on frustration I briefly feel justified, but then I feel bad and selfish, and irrational.
Lucy had her EEG and the doctors saw very strong seizure tendencies in her brain. That now means that she has to have an extended EEG to determine if there are seizures occurring so that we can start her on medicine if necessary. Also, we are going to Danville on December 5th for the MRI and she will have to be sedated for that which terrifies us. Then also her pediatrician is calling Children's Hospital of Pittsburg on Monday to try and get her into the neurodevelopmental pediatricians sooner than we could get into the ones through Geisinger. AND, the neurologist also made a referral for Lucy to be seen by the geneticists at Geisinger. So I am glad that things are in motion and that the doctors are now really making good plans for finding out what all is gong on with her, as it is obviously more than just hypotonia, but holy crap it is overwhelming. And I know that what Lucy needs is for me to be strong and rational, and to accept that we have a situation and that we just need to find out what it is and what we need to do to help it. And I can do that, absolutely, but it is exhausting. I am mentally and physically exhausted and then sometimes, out of nowhere, I break down and cry and get mad and sad, and then pull it back together and keep on moving. Last weekend I cried because of a music video by Taylor Swift that they showed on 60 minutes. The week before that I was looking at walker options online and lost it. I didn't cry this morning, but that bowl refusing to stick to the damn tray was just more than I could bear! Like there is already quite enough to worry about without this stupid bowl failing me. So instead of taking that one little inconsequential thing in stride I acted like the world was ending. But I'm probably better now for today.

Saturday, November 19, 2011


Her beautiful blue eyes, her fluffy curly hair, the way her face lights up when she sees something or someone see recognizes and loves, her hugs, the way she rubs my cheek when I'm rocking her, how she plays with my hair when I am holding her or carrying her, her soft skin, her love of books, the way she pats Elmer and gently pulls his fur, when she laughs...a good, loud, real laugh, her cuddling, the patience she has with herself, she is happy more often than not, the adorable way she hugs and squeezes her stuffed animals (and chews voraciously on their faces), how good she is at knocking things down...towers and such, her tiny sweet feet...
I could go on and on and on about the things that I love and cherish about Lucy. But I got a fortune once in a fortune cookie that said: "To worry about what you don't have is to waste what you do have." I feel like sometimes we spend so much time and energy worrying about what Lucy does NOT yet have that it is important to take a big step back and take time to just enjoy all of the awesome things that she does have. There's only a couple of things that Lucy "lacks", but unfortunately they are biggies and a lot of attention has to be given to them all the time.
Chad and I watched a show on the history channel once that said fortune cookies don't really have anything to do with China or Chinese food and that they were first created in like New York or California, which kind of made me sad because it took the magic out of the whole fortune cookie experience for me. But every now and again a fortune comes along in those irrelevant cookies that really makes sense to me...I even keep it in my wallet. This one helps me to remember all of the wonderful things about my daughter that get pushed aside sometimes for the worrying of what she doesn't have...yet.

Tuesday, November 15, 2011

The next steps...

Today we finally had Lucy's follow-up appointment with the neurologist that we saw in May. He did a bunch of stuff to test her reflexes and nerves and whatnot. While he did this several times he said, "oh your just not here with me are you?" and "You must have other things on your mind." because she just sat and smiled at him a lot of the time, but I guess she does that to us often too. After he examined her and talked to us for quite awhile he said he wanted an MRI done, which we figured would be the next step. He also wants to have an EEG done to check for seizure activity. He asked if she ever seems to be staring off into space and not responding to us and I said I felt like I have definitely seen her do that or a version of it and chad said he didn't really think he had ever seen anything like that, but of course I am with her all day. My mom also said she has seen her do that before too. Luckily, the EEG can be done at the Grays Woods site and we already have it scheduled for Monday of next week. The MRI will have to be in Danville and Lu will have to be sedated which is super scary, but it's a risk that we need to take it seems.
The doctor didn't say anything really surprising or unexpected, and I was prepared for him to confirm our concerns, which he did, but I still just felt somehow like a zombie or something. Chad said that he thought I would have a lot to say in the car on the way home and he kept looking at me expecting me to talk and talk, but I felt weird and not like talking much. Having been an early intervention special instructor, I am familiar with some of the diagnostic processes and I am certainly familiar with families struggles to try and find out what is happening with their child. I just never imagined that I would have to become so intimate with those things that I have previously just been "familiar" with. It's almost surreal to me that things I have had to learn so much about and help others with is now something my family and I are experiencing first hand. Like I have been in training for being Lucy's mom for years now. Actually, when I had to move on from the early intervention job for a more full time position while Chad was in college, I literally spent an entire day crying and lamenting the fact that I had to leave that job. I loved it, but I also had never felt so upset about quitting a job...ever! Was this why I wonder sometimes? I do not especially believe that "EVERYTHING happens for a reason" like people like to say, but I guess I do believe that things do have a way of falling into place or happening in a way that makes you think that it was supposed to work out the way it did. I have said several times that it's not like I became a dentist or a mail woman or something like that where I would have not learned a lick about the things that I learned in my special education classes or at any of the human service jobs that I have had since graduating from college.
It's been a long day and I am having trouble concentrating. I feel just kind of drained and sad and like I'm not really getting m point across effectively, so I'll try again tomorrow.

Thursday, November 10, 2011


I have a chicken named Bebe and I guess she would be considered a "special needs" chicken. From way back when she was still a wee chick she spent a lot of time just sitting in the box where I kept my new flock. It wasn't super noticeable at first, I just thought maybe she was a little lazy, but then as she got older I realized there was something truly wrong. She could barely walk and spent most of her day sitting. After the initial worry that she was possibly dying wore off, I accepted that she must just have some genetic problem or something, no doubt brought on by the mass "production" of peeps which I condemn, but then hypocritically support by purchasing them from Tractor Supply. Anyway, Bebe had always been smaller than everyone else and she had some odd black feathers here and there throughout her white feathers which i felt were more indicators that something was probably not quite right with her. The day I went to get my chicks there were literally only 7 pullets left. I had originally only wanted four, but you have to get 6 at Tractor Supply and I didn't want to leave one there all by itself. So I remind her occasionally that if I had not taken her home that day she would likely have been mercilessly culled already and digested (possibly).
I let the girls roam free during the day and most days she hobbles up through the yard to sit under the lilac bush or the pine tree and she spends all day there. But I often think "What spirit that Bebe has!" It probably takes her at least a half hour to make it from the coop to where she is going to sit that day and it might only be like 50 feet or something, but she takes a few steps and then has to stop, eats some grass, and then keeps going. As summer ended and it was getting chillier, Bebe started refusing to walk back down to the coop (actually she would usually fly!), so I have started carrying her down each night. But I still think, "good for you that you even made the effort to leave the coop today!" And thinking about Bebe inevitably leads me to think about my Lu. And I think that no matter what happens in her life I hope that she can maintain the same kind of positive spirit that it seems Bebe has.
But then sometimes I have to witness how Bebe is treated for being the lowest in the peck order and then that too makes me think of Lucy. Bebe is the lowest because she is physically unable to keep up with the rest and because they know that she is "inferior" to them which I hate to even say, but it is the harsh reality. And I know that we don't know what the future holds for Lucy. She might be walking at her second birthday, but she also might not be and it's the agony of what we don't know that drives be crazy most of the time. Right now she does get left behind when she is with babies her own age because they are on the go and she can only sit and watch which breaks my heart. But if I manage to live in the present I can handle it a little easier because it's just that moment. On Tuesday we have a second appointment with the neurologist that we saw in May and last night I dreamt that he said given the time that has passed since he first saw her and the progress she has slowly made, he doesn't think that she will get any better than she is right now! It was awful and I was crying and crying in the dream and I know that she will continue making progress, I just constantly worry about how much she will or will not make in the future. And while I love my chicken Bebe, I don't want Lucy to be at the bottom of any peck orders because she can't keep up or is seen as inferior! I just don't want her to be left behind or trampled on or pitied.

Sunday, November 6, 2011

The one where I nearly had a nervous breakdown in a public restroom

Tonight I will try making paragraphs so that Chad will quit nagging me about how it would be easier to read if I made paragraphs when I am writing. For the record, I don't feel especially (or at all) concerned with there being paragraphs or being super anal about grammar and spelling. Maybe as a "blogger" I am supposed to? I don't know or care really, but I guess I do want my devoted fans (haha) to be able to understand what I am trying to say. In addition to playing fast and loose with paragraph formation, I also feel strongly that it is okay to say whatever I want, even if it is gross, embarrassing, mooshy, corny, private, angry, etc. This is my blog and I'll blog on with my bad self however I see fit. (perfect example of something dweebily embarrassing I might say) So there, paragraph one!
So today Lu and I went to JCPenney to use some sweet coupons that I had. I had her in her stroller and shortly after we arrived I had to urgently use the bathroom...if you know what I mean. There are maybe 5 stalls in the Penney's bathroom at our local "mall" and there is one stall that has bars on the walls and it MAY be a zillionth of an inch larger than the other ones, but I will tell you something right now, there is no way in hell that an adult in a wheelchair could fit into the stall and be able to close the door to acquire the privacy that they have a right to. And so, inevitably neither can a grown woman with a toddler in a stroller. I ended up having to hold all 26 pounds of Lucy on my lap as a took care of business and then had to hold her in one arm as I tried to zip, button, and buckle my pants. There was absolutely no way that I would sit her down on the ground to take care of all of these awkward maneuvers and about halfway through I realized that it might have been possible to let her in her chair right outside of the door, but then what if someone had come in and kidnapped her before I could get out of the stall. So, really there was nothing else to do but hold her on my lap and struggle to get redressed.
Now throughout all of this I was planning how I was going to go home and research what the Americans With Disabilities Act says are the requirements for a handicap stall in a public restroom. And then marching right back to this restroom to measure it and then call a conference with a manager or something to see what they planned on doing about how they are not following the law! And then I thought about how we as a self-centered species seldom think about situations until we are actually in them. For example, one summer I worked at a camp for people with spina bifida and I have never been so grateful to be able to move my bowels and empty my bladder on my own! I had to learn how to help people do these things with catheters and enemas and realized how lucky I am, but had I not been working at that camp I might not have ever been in the situation to be grateful. So sitting on that toilet trying to figure out what to do in this situation suddenly made me feel so guilty for not worrying about how people in wheelchairs would possibly use that stupid bathroom! And how anyone else in a similar situation as mine might manage. Lucy just keeps getting bigger. How long am I going to be able to balance her on my knee so I can go to the bathroom? It stresses me out and I was so mad and frustrated by the time we left the restroom I just wanted to go home. As always, however, Lu was her sweet, patient, and calm self. She just let me jostle her around and figure out what to do without complaining too much at all.
I do my very best to remain as positive as I can about this situation, but sometimes I feel a sudden nauseating panic that comes surging up through my throat and then I cry. And then I move on. I try not to complain because obviously no one's to blame, Lu can't help it, and it wouldn't do any good to be griping all the time anyway! But then something like this happens and I need to vent and now I did so I will keep on keeping on.

PS. The title was inspired by the fact that the title to all Friends episodes started with "The one..." so that was amusing to me!

Thursday, November 3, 2011

The word "wrong"...

Something I think about a lot and remain vigilant about is not using the word "wrong" when referring to what is going on with Lucy. Like, "doctor, what do you think is "wrong" with her?" or "We don't know yet was is "wrong". I have said to my mom that even the things that we are supposed to see as delayed I can't thnk of as being wrong because I think everything she does and is so sweet, and so just Lucy, you know. I love everything about her even though a lot of times what she is or isn't doing is not seen as age appropriate or "typical" , or the dreaded "normal". Recently Lu started to throw a toy to Elmer (our puppy)and he brings it back to her...even when she has only thrown it a few inches and he barely has to move, he still seems to go through the motions for her. And this makes her laugh, a real laugh, and just this week she clapped her hands and kind of said "yay" in imitation of me when Elmer brought the toy back. These are things that babies much younger than her have long since mastered, but to us these are huge accomplishments! Lu makes noises and sounds and sometimes what she says might sound like a word, but she is not yet really "talking". Just in the past month or so she started putting her hands together in a clapping motion, and the imitation of yay is brand new. Just a few weeks ago the idea of her picking up a toy and purposefully throwing it knowing that elmer would bring it back was only something that we hoped she might be able to eventually do. So all of these things are quite delayed in taking place, but to us the very last thing they are is wrong! They are all right, and good, and amazing. We don't know how much she understands or what her cognitive abilities are or will be and we don't know when she might crawl, or walk, or run,or jump. But when we were doing Itsy Bitsy Spider at the library the other day Lu was making a sound like she was singing along too, and that is just what's right for her. So I guess I'm just saying that it might seem like she isn't doing things "right", like according to text books, but every day she does a million things in just the way Lucille May Shaffer was meant to do them.

Wednesday, November 2, 2011

About Lu

I have wanted to write a blog for some time now, but first I had some troubling understanding the concept and then when I realized people might make comments I thought that sounded scary, but I am finally ready to begin and see how it goes. Lots of people do it so it must not be too intimidating. I was never sure what I might write about either and why would I write about something and why would anyone else want to read it anyway, I thought. But what I am going to write about is my daughter Lucy and the journey my husband, Chad, and I are currently on. At Lucy's 9 month doctors appointment I voiced concerns that she did not put weight on her legs, or push up on her hands. Her then pediatrician said sometimes it just takes some babies longer and I didn't have to run out and get her evaluated for early intervention just yet. I didn't really feel comfortable with his cavalier attitude and a few weeks later I did call to set up an evaluation for her. She didn't qualify. So three months passed and Lu made almost no progress. She was still not crawling, walking, pulling up on furniture, or even getting in and out of sitting on her own. A new pediatrician we started seeing sent us to see a pediatric neurologist who said Lucy has hypotonia which is low muscle tone. He said that her muscles seemed strong and healthy, but we had to wait and see how she progressed and we would go back to see him in 6 months! 6 months we have been sitting and waiting! In the meantime Lu has been having weekly sessions with a physical therapist, occupational therapist, and recently also a speech therapist. Lucy will now bear weight through her legs, she can hold herself in a crawling position, and she can get out of sitting on her own. She is 17 months old now and still cannot crawl or walk, does not push up onto her arms when on her belly, and basically is not yet able to transits on into any positions on her own, including simple ones like sitting up and laying back down. She now weighs 26 pounds and was 32 inches long at her 15 month check up so she's probably longer by now because she had a little growth spurt about a month ago. She's not really talking, but makes sounds of all kinds. It is hard not knowing what is causing the hypotonia and what her future may (or may not) hold. It is hard to carry her everywhere when she is so big and does not really help hold herself up. It is hard not knowing any other parents that really know how Chad and I feel and what we worry about. So I am hoping stat by writing this blog maybe I will hear from other parents and learn things fom them and maybe even be able to help them in some way too. Little bits of information here and there could go a long way to maybe feeling a little less alone in our journey of trying to understand why our sweetie has to work so hard to accomplish things that just comes naturally to most other kids.