This time of year is always super busy for our family. Sarah's birthday comes so closely after Thanksgiving which is, of course, followed by Christmas. It seems like these six weeks keep us running from one thing to the next.
Sarah had a couple of girlfriends and her cousin over last night for a sleepover in honor of her birthday. Bob took the girls to an indoor venue that has video games, roller skating, laser tag, and all of those sorts of things. The girls were there for four and a half hours just having fun. When they came back some of them were geared up for more fun, so they stayed up pretty late (as sleepovers are naturally prone to do) and got up pretty early. Even though I was really apprehensive about having a sleepover with more than just 1 person (our house is so small there is really no place for anyone to go to hang out) I am really glad that I decided to go ahead and have the party anyway. It is so good for Sarah to be around those girls. I really need to get her together with her friends more often. Life just seems to get so busy, and then boop another month or two has gone by. Her friends put a smile on her face though and her smile lights up my life, so more friend time it will be.
On another note - Sarah will be finished with her steroid taper next week, and I am nervous. I cannot put my finger on why, but I just have this pit in my stomach that something is not right with her. She has both a neurology (with the new neurologist) and an ophthalmology appointment this week, but because Sarah is still on her steroids I doubt that they will notice anything unusual. It took her so much longer to recover this time, and I am not sure why.
I have been in a funk lately because of this whole MS business. I am tired of it. I am tired of thinking about it. I am tired of researching things about it. I am tired of seeing my daughter affected by it. I am tired of writing about it on my blog. I just want it to go away. It is just weighs so heavily on my heart. I try very, very hard to be as upbeat as I can about everything. I try to have a good outlook and a fighters spirit about the whole thing, but sometimes I feel weak. I feel like God was extremely mistaken when he thought that I could handle all of this. I am not the person who he thinks I am. I cannot do this. I cannot be a beacon of light for my family. I cannot blaze a trail with diet instead of medicine. But when I think about giving up and giving in I know that I cannot do that either. I won't stop thinking about it. I won't stop researching things about it. I won't stop writing about it on my blog. It won't just go away, and so I won't just give up. It all just feels so heavy, and I don't know if I have the strength it will take to get through a whole lifetime of having a daughter (and a mother) with such a debilitating disease. I keep hoping that I will wake up one morning, and the whole thing will be a thing of the past. Like the common cold. I keep hoping that we will only have to endure all of this for just a bit longer, and then we will be able to put this whole MS business behind us. Unfortunately, as my reality reminds me each morning as I open my eyes, this is just not the case.
As I have researched dietary changes I have promised Sarah that whatever I asked her to do I would do also. So, when we officially gave up dairy last week I thought that it would be impossible. There are so many foods that are now eliminated from our diets, and I thought Sarah would resent what I was asking her to do. In true fashion, as she has so graciously shown me time and time again, Sarah is doing amazing. She had one time this week where she cried because she was frustrated that there was a snack that she wanted to have that a bunch of her friends were having, but it had dairy in it and therefore she could not eat it. (Being Sarah, she waited until she got home before getting upset. You would have never known how sad she was while at the event she was at.) I sat down with her and told her that if she did not want to go through trying to eliminate foods in her diet that she did not have to. I explained to her that the choice was hers and I would support what ever she wanted to do. She, without giving it a second thought, said that she wanted to try making these dietary changes because getting rid of certain food would be easier than taking a shot once a week. I am so proud of her. She is doing amazing. She was telling her friends this morning that she is choosing to forgo dairy because the alternative is taking a shot once a week to try to help her feel better. I am so amazed at her grace. I know that at 9 I would not be handling all that she has to deal with so well. Kids are amazing. My kid is super amazing.
I also have to say that I have moments where I am super proud of myself. I am taking on this mountain and super challenge called food, and I am trying to sift through the garbage of information out there and make sensible dietary changes that most of the Western medical system does not believe can help Sarah. When we get through a meal, like tacos, and everyone in our family loves them even without the cheese I feel like I am on top of the world. It is so unbelievably gratifying when I am successful, even with something as small as 1 meal, because it makes me feel that all of those times when I feel so alone and up against the behemoth food and pharmaceutical industries and have so much doubt, that I am right in listening to my gut. That feeling, to me, is worth a million bucks.
Elizabeth has been driving me darn near crazy lately, and I regret not putting the time in with her when she was an infant that I put in with the other 3 kids because I am paying for it now. Every. Day. In looking back, I realize that a lot of my issues with her were created by me and my laziness. Yes, she does have a quirky personality, but that doesn't explain or excuse some of her behavior. When kids are her age, I credit their bad behavior to bad parenting, and I can honestly say that I was an inconsistent lazy parent with her when she was younger. I was so busy with 4 kids 6 and under that I did not put in the time necessary to have a well behaved non heathen child. 'No' did not mean 'no' with her, and you can tell now. So, it is time to put in the necessary work of not only breaking bad habits, but instilling new ones. Lord, help me.
I will say, though, for all that I am criticizing her for lately Elizabeth does have a lot of goodness in her. I got very sick after Girl Scouts on Wednesday. I spent the evening in front of the toilet, and it was Elizabeth who came in and rubbed my back for me. It was Elizabeth who told me that she was going to sleep on the couch with me just to be sure that I was okay. It was Elizabeth who drew me get well pictures. There is a lot of good in her, so I know that she is not some demon child. She just has some really bad habits that need to be broken, and were formed because of me. (The other kids were also very sweet when I got sick. The older 3 made me hot tea and offered to run a hot shower for me and also made me a "bed" on the couch so that I would not get Bob sick. They did this all without prompting. Pretty cool, huh?)
I am really looking forward to Christmas this year. The kids decided not to ask Santa for a trip, but instead wanted presents. They asked for 5 things each, and I was happy that they had the self restraint to limit themselves. I hope that Santa is able to comply with their lists.
Well, I guess that's it. Whew! That was a long one.
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