Not so composed...

I was working on the last post yesterday and as I try to do, I was looking at the situation as calmly and rationally as I can. I try hard to not sound like I'm whining or always being like, "oh woe is me" but then we watched the show, "A Gifted Man" last night and one little thing in the show induced a little sobbing break down that caught me totally off guard. A little girl in the show had the Chiari Malformation that Lucy does not have technically, but is considered borderline in that her cerebellum is only very slightly lower than it should be. In the show the little girl was in a car accident and her brain started to hemorage because it got pushed down even lower and they didn't even know she had the malformation in the first place until this accident. So she nearly died and then I just started bawling because what if something like that would happen to Lucy someday. That's what made me cry, but then what really made me lose a little control is The effort I put into trying to remain so rational and accepting as I described in the previous post.

As I was crying and talking to Chad, I said that I know it is our job to not sit around crying all day about the things we worry Lucy is missing out on, but I just get really super pissed sometimes and I have to let it out! I want her to walk and I want to see what that looks like! I want her to talk and I want to know what she thinks and what she knows! I want to freaking know what is causing all of this and I am NOT ok with not ever knowing. It sucks! It sucks for her, it sucks for us and I just want it to be better. When people say that no one ever said life's fair they are right on the money because it most certainly is not. I don't know why humans constantly expect it to be, but maybe we are just inherently optimistic creatures, even cynics seem to still expect a certain amount of "fairness" in their lives. And then even when something happens that is not fair, I still sit around being like, "hey, no fair!"

In addition to simply suppressing the frustration and anger that I feel, I acknowledge also that I put an incredible amount of pressure on myself to make things better. I am constantly, CONSTANTLY worrying that I am either not doing enough therapy stuff, or I'm doing too much and not just letting her be a baby enough. I think I am literally in a hidden, low-grade panic for most of the day just worrying about doing the right thing and trying to make sure that everything that happens in Lu's day is as beneficial as it can be...without being too overwhelming to her. Every second counts I guess is the way that I look at it and so on top of just being mad, I also stress myself out pretty regularly which then contributes to mini little meltdowns.

So yesterday's post did not have a title until I started writing this one, like compare and contrast I guess. These two posts are like pictures of actresses with all of their makeup on and then without it, like the tabloids like to show sometimes. But honestly, I wear all of that "makeup" (metaphorically speaking) more for myself and chad and Lucy, just so we are keeping it together, than for the outside world and sometimes it is exhausting.

PS. Even though that episode made me cry, I very highly recommend the show A Gifted Man, it is one of my new favorite shows!

Composed

At Lucy's two week appointment with her first pediatrician in Clarion , I was so nervous that she was going to give me a hard time because we had given up on nursing and switched entirely to formula. I explained to her that I just could not get her to latch on properly and nurse for any extended periods of time and that she had needed the calories to poop out the bilirubin from her jaundice, so I had given in and gave her a bottle (after five days of trying). Prior to this experience I had never believed that there were actual situations where women could not nurse and I certainly never considered that I would not be able to. But Lucy's doctor did not give me a hard time at all. On the contrary, she said that parents have ideas about how things will be, and then the kids come along and tell you how it's actually going to be and when it isn't the way you had envisioned it, you have to learn to be flexible. So she made me feel a lot more relaxed about the decision we had made to choose sanity and Lucy's health over our (my)own ideals.

That was just the first lesson that Lucy had to teach us about how things were going to be as her parents. Before her first birthday I kept thinking about how we would be able to run and play through the big yard all summer and how maybe she might "help" me a little in the garden. Instead Lucy got to go for wild wagon rides all through the yard and sat in the shade under a tree and watched while me and her Pappy planted the garden. I have always thought out toys for her to pretend with, but she doesn't do that yet and so I put some of them away the other day...just until she's ready for them. I often have to change all of Lucy's clothes and sometimes her diaper after a meal because she loses so much liquid when she drinks that she gets soaked. She can't tell me yet what she wants and needs which is frustrating for both of us. Today I made homemade bread for the first time by myself (without Nanny) and I so wish that Lucy could've been standing on a chair beside me with her hands sunk down into the goopy dough too,but someday she will hopefully be able to.

I guess probably all kids teach you lessons like this no matter what capabilities they do or do not possess. Maybe it is just the big lesson Chad and I are learning that Lucy is doing things differently than the average child and the way she does them is gradually and just not how we expected, but in her own little way.

My selfish optimism

The past couple of nights Lucy has wanted me to rock her a little bit either at bed or later in the night, and then she has fallen asleep in my arms. I read her a story every night before bed and rock her, but it is not often anymore that she wants me to rock her to sleep, because she is a big girl and can put herself to sleep these days. But anyway, I have been getting a little emotional during these times and I'm not sure why, but what I have been thinking about while I'm tearing up is that we have gotten to enjoy Lucy as more of a "baby" than parents generally get to. I often think about the fact that I NEED to carry her most places because she can't walk, but then I was thinking the other night how lucky I am that I still GET to carry her, and hold her all the time, and just always be close with her. I am a close, huggy, touchy kind of person though, so for me trying to see this as a positive is just natural. But then I feel like it is selfish of me also because I shouldn't take any bit of joy in her not being able to do things that other babies her age are able to do, but maybe it is just a way I am coping. But I do love to get to snuggle her and squeeze her, and she's not ever trying to get away from me!

I used to carry her in a little front carrier and when she was just born I used to said that I liked it because it made me feel like I was still pregnant and Chad said that I would probably spend the next 20 years trying to get her back in there ( or something along those lines) and he is right, not literally of course, but I love to be with her all of the time and cringe at the thought that she will be grown up someday and will move away, but then at the very same time all I think about and hope for is that she is able to do that someday.

So I guess my main point is that while it hurts my heart to see other babies her age doing all these things that she can't do, but should be able to by this age, I try to look on the bright side and be glad that I have gotten this extra time to cuddle her.

Shaffer L. 390

So, Lucy's MRI came back almost normal. Her cerebellum is a little lower than it should be, but not enough to categorize her as having Chiari 1 malformation. Chad and I read online that this can cause poor coordination and balance and weak muscles...so that makes sense! She also has delayed mylenation of her neurons which from what we understand, this means that the mylen that should be coating her neurons and sending signals is behind and not equal to her chronological age. There is no treatment other than the early intervention therapies that we have already been doing for 6+ months and she will make progress at her own pace.

And now we have spent the night at the children's hospital in Danville while she has an extended EEG to determine if she is having seizures and we received some good news this morning. They have not seen any seizures taking place, although her brain is sending off "sparks" that do have the potential to be a seizure. So I guess it is not 100% good news, but we will take it! The doctor said that since she has not seemed to have any real seizures so far that the risk for the sparks becoming a seizure is lower. He said that the sparks and any possible absence seizures that could take place will not cause any damage to her brain. The risk is that a spark has the potential of becoming a grand mal seizure which are dangerous, do cause damage to the brain, and can make her stop breathing. Chad and I were given the option to either start her on a medicine called Kepra to be used as a preventative measure or to just watch carefully and call the doctor if it seems like something is changing or has happened. Kepra has only been around for 10 years and since we have no evidence that she definitely is having seizures and since we obviously can't predict the future to know if she ever will, we chose not to start the medicine. I obviously keep an eagle eye on Lucy anyway and since I get the pleasure to spend all day, every day with her, I will certainly be able to keep track of any suspicious changes or behaviors. The doctor also said that the sparks are not causing or exasperating the delays that she already has, but that he believes the hypotonia, the developmental delays, and these sparks are likely all being caused by something else, but that we might not ever know what the cause is. That is frustrating to me because I want to know, but chad said "Who cares as long as we can help her get past it!" and that is true.

So I felt so incredibly relieved and overwhelmed today when we got this news. The other day when we heard that her EEG was almost normal Chad was so relieved, but even though I was too I was not able to unclench even a little bit and let myself feel confident until we got here and had the EEG done for longer. But now we have and it seems like everything is hopefully going to be okay. There are still dangers to watch for, we still have A LOT of work to do with the therapists since she still is so behind especially in her gross motor skills, but now I feel pretty sure that there is no big, life-threatening monster lurking somewhere inside of her. And then Chad said, now we didn't have to sit around and worry that she isn't going to be able to have a full and independent life because I did worry about that constantly! It wasn't that I worried that something very serious might be wrong with her and we would need to take care of her for all of her life that I worried about. It was that she was going to be stuck with us for all her life and not get to get away and do things for herself and be on her own. This worry consumed me in a gut-wrenching, heart-stabbing way. Instead of being rational, all I could do was make a frantic and depressing list in my head of all of the things I was terrified she would never get to experience. I'm not saying we are in the clear here, but with the tests we have done so far, it does look pretty promising that we will be able to overcome all of these things with Lu and she will eventually, hopefully be caught up, or close to it. I'm not really one for believing that everybody has to do all of the same things at the same time, in the same way, etc., but when it comes to things like this I understand the need for some standards and uniformity and we will just be happy that Lucy is able to catch up to the pack enough to see them, even if she is still or always just nipping at their heels. But after all of this, she just might someday be leading the pack and we will always just assume that to be a possibility too, and love her and support her, and be proud of her no matter where she ends up.

Lucy's excellent adventure

So here we three sit in a pretty bleak Day's Inn in Danville in preparation for Lucy's MRI tomorrow. I called this post "Lucy's Excellent Adventure" because she has so far behaved as though we are on some wonderful trip and every new thing we've done has been so much fun to her. As she sat and played on the hotel bed this afternoon she laughed and smiled and tossed herself around like she was at an amusement park or something! Supper out at the local Friendly's restaurant was equally thrilling to her as I let her have french fries, chicken fingers, and even a little strawberry sundae afterward. Then her nightly bath topped it all off. Besides the fact that she slips too much when there isn't something soft and grippy under her bum, the bottom of the tub did not come close to meeting my cleanliness standards for where I will put her bare tooshy, so she got to shower with momma! As soon as Chad handed her toward me she was smiling and laughing even more! She was heavy and slippery and the whole affair was pretty precarious, but so much fun because she had such a good time and just giggled and was silly the whole time. Plus she is now sound asleep beside me in the bed and gets to sleep with me all night!
And in the mean time if I am not careful I instantly think of what we have to do tomorrow and the risk involved with the sedation and I literally could puke. I look at her and just want to punch somebody in the face. Which is silly because I have never punched anyone in their face and I am not violent in any way, but I get so angry that I feel like attacking someone. I said to Chad on the way here that I go along making appointments, doing the therapy sessions and therapy on my own, preparing for these trips and procedures, etc., but then every once in awhile it kind of hits me and I'm just like, "WHAT!" "HOW CAN THIS BE?!" Our sweet precious baby has something "wrong" with her, and as we have found out in the past couple of weeks, it's quite possibly more serious than "simple" hypotonia. I have said since we first started seeing the delays that all I have read says hypotonia is a most often a symptom of an underlying cause so I guess I have always known that there was going to be more to come than just the therapies. A mom knows when something is not how it should be with her baby and I knew, but it still hits me hard pretty much on a daily basis and now I have to let strangers give her something to put her to sleep and trust that they are going to do it absolutely right and she will be safe. I can barely stomach the thought of having to leave her with strangers period, let alone strangers that are sedating her and the going to scan her brain.
Luckily the hospital was able to schedule her extended EEG for Thursday of this week. I was a little overwhelmed at first, but then totally floored when I asked the lady on the phone how long they usually take and she said 3-5 DAYS! The doctor who told me they wanted to do this tests did not tell me that extended meant by days...I just assumed it meant a few hours. So now we will be home for a few days and then will go back and stay in the hospital with Lucy attached to the EEG machine for however many days it takes for them to get the information that is needed to decide if she is having seizures. So it is going to be a super long week for the Shaffer family, but I am so glad that we did not have to wait to get all of these tests done and that we will hopefully have some answers by the end of the week or weekend. It's answers that I want, but it's also what those answers might be that scare me to death. But, I guess we will just have to see what happens...regardless, Chad and I will handle it and do what's best for Lu.