Monday, June 28, 2010

Headed to the beach.....

Leaving home for the beach turned into a tense filled event. We were going to take two cars due to all we bring to the beach for the week. Suitcases, boogie boards, umbrella, pails, shovels, fishing gear, and of course, my husbands metal detecting gear. Oh how I hope he comes upon something valuable one day. If anything so we don't have to hear him gripe about never finding anything of value. Anyway, that made Mary happy because two cars meant she could sit in "her" spot and not in the middle. Then Tom realized with some crafty maneuvering, we could all go in his truck.
Mary had a colossal hissy fit. No amount of explanation, consoling, or deal making made her feel better. So naturally, I turned to screaming at her. Something I always immediately regret.

I turned to the back seat and very sarcastically said "there's more leg room in the middle anyway". In which Christine, (my 2nd oldest) said she was just thinking the same thing. Christine, being Christine naturally agreed to sit in the middle.
I am so proud of my oldest girls. Both Sarah and Christine have an innate sense of wanting to be helpful, but knowing they shouldn't just jump in and save the day. We decided after we stopped for lunch, they would switch seats, and Mary could have her seat directly behind me.

All was right again in Mary's world, and of course in mine.

Tuesday, June 22, 2010

Going to camp...

Mary is on her second day at Vacation Bible School camp. It is only till 12 o'clock, and I knew she would be o.k. being in familiar surroundings with people she knows. So far, so good, she is having a good time. I love that she finally can relay to me some of what she did during the day. Sunday evening she was very stressed out. I know she was worried about going to camp and starting something new. When Mary is worried about something, she becomes very distressed. Always, when I ask her what's bothering her, she says she doesn't know. There is really nothing I can do or say to make her feel better. It is only after she goes, that she feels better. As long as nothing negative happens. I guess like most of us, she is afraid of the unknown.

Our summer so far is going well. I feel like I've got my Mary back. I don't know if it has been the change in medication, or keeping her from playing with those girls everyday. We still have issues with unraveling the hems in her shirts, but it is definitely not happening as much. Hopefully it will stop all together. She does seem less stressed. We are getting ready to go on vacation for a week at the beach. We take this trip every summer, and every summer Mary starts obsessing about it. I know she is nervous because even though we go every year, she can't quite remember how she felt, so it becomes an unknown all over again. Already she is talking about the long drive, and where she is going to sit in the car. I wish I had magic words, because she will drive us all crazy until we get there!

Friday, June 18, 2010

Two birds with one stone...

I have always tried to stay active and attempt to keep myself fit and healthy. When Mary was a baby and we got our first diagnosis of Developmental Delay and Hypotonia, I started working out vigorously. I went to the gym, got a personal trainer, and started lifting weights. It felt great to have control over something. I started to tell myself that I was doing it for Mary. We didn't know when, or how she would develop. So, every time I worked on my legs, I would push myself as if I could will her legs to grow to be strong. Same thing with my arms, and so on. Now, I did not end up with this perfect hard body, but I was happy. I never really struggled with my weight. I go through stages like everybody else, hate my weight, love my weight etc.. At this point, I am just trying to maintain my weight. Basically, I exercise because I love food! I have also come to realize that my general frame of mind is better with exercise. I know when I started this blog, I was depressed. I also had not done much exercising in weeks! Feeling much better these days, thanks to my intense need to help Mary.

I have been going to the YMCA just about everyday for the last 2 weeks. In trying to keep Mary occupied, and from missing her "friends" too much, I figured an hour or two in the kids club would make her happy. It worked, even when I don't feel like going, I push myself for Mary. I realized today that I was pushing myself harder again. All with Mary's happiness on my mind. Once again, I feel like I have a bit of control, my mood is better, and I don't have to feel guilty when I polish off a pint of Ben & Jerry's. I hope that I can keep it up during the weeks I have her in camp.

Wednesday, June 16, 2010

Making friends

Mary has always been very friendly, but has never really had a "friend". This year, a girl in the neighborhood started going to Mary's school. I take both girls to and from school each day . I was thrilled to see Mary interact with this girl, they both seemed to understand each other and not get bothered by the sometimes off the wall conversations. Mary also opened up at school, her teachers where pleased with how she grew socially. Even her reading voice became louder, the teachers could finally hear her. I know having this friendship helped Mary to not feel so different. Now, like her brother and sisters, she had friends. I was happy to see her not spend so much time alone. This girl also has a sister Mary's age , so everyday there was someone to play with.

Well, we have had to put the breaks on this situation. Mary has developed some negative behaviors and I have noticed changes in her attitude that I am not pleased with. There was an incident here in the neighborhood where one of the girls blamed Mary. Fortunately a neighbor witnessed the whole thing and Mary had nothing to do with it. Mary however, was traumatized! It was impossible to help her understand that we knew she didn't do anything wrong. Both of these girls have had a rough upbringing, they are being raised by their grandparents because mom has been deemed unfit. So, understandably there are behavior issues.

So, after talking with their Grandmother, I asked that she keep the girls from coming by everyday. Mary is so easily manipulated and very easily influenced, and I am afraid both of these girls have taken advantage of that fact. Even Grandma admitted to that, with explanation of course. I know that I cannot shelter Mary from everything, she needs to interact with other kids. I can however, do whatever it takes to make sure she is not taken advantage of. Mary is a wonderful mimic, she tends to take on the likes, dislikes and mannerisms of other people. They say it's because she doesn't know how to act like her own person. Something clinical like that.

Mary will start "play therapy" with a psychologist in August and I will do my best this summer to help her learn to be herself. To help her understand what it is like to have, and to be, a good friend. It's funny, because Mary has such a wonderful, unique personality all her own. It would be nice if everyone were a little more like Mary.

Saturday, June 12, 2010

In the sandbox....

We went to the beach the other day. What a perfect day. Mary was so excited, but it was so hard for her to wait the hour it took to drive there. I was feeling quite content and peaceful. I was in my sandbox all day. I wish I could bottle up that feeling and take a drink whenever I need it. Unfortunately that can't be done, fortunately, they sell wine at the grocery store. My son played with Mary and she had a blast! Jimmy is only 15 months older than Mary. When they were little, they were inseparable, now he gets easily embarrassed by her, and will avoid her as much as possible. I know it is hard for him to understand, even though we have been dealing with her sometimes odd behavior all her life. If we are out in public and she does something silly, he gets upset and tells her to stop. I know how he feels, I was just as bad. That's probably where he gets it from. It was hard for me to change my way of thinking and dealing with certain situations when we are out in public. My two older daughters have no problem, they love and accept Mary just the way she is. I will keep working on Jimmy, I know he will get through it.

Why is it that our children pick up on all our anxieties and negative hang ups? My oldest daughter will be 21 in Sept. I am proud of the responsible, well adjusted adult she is slowly becoming. I thought for sure I screwed up her life for good. Luckily I didn't, but I do see that she is a terrible worry wort, has anxieties and fears for which I am constantly telling her to get over. Gee, wonder where she got all that from? I had a meeting at Mary's school yesterday with her teachers and a school psychologist. We went over her evaluation and discussed how to help her with her school/homework. Probably the most important thing that came out of that whole meeting is how I need to deal with everything. I know that my anxiety about her doing her homework or not understanding something is transferring onto her. Mary has anxieties and fears that are magnified 10 times worse than mine.

Somewhere in my mind I equate worry and stress about my children with love. If I don't worry enough, it means I don't love them? I realize that is a very twisted way of thinking, and it has done nothing for me but mess with my health. It seems I am constantly learning something about myself and how I mother my children. I don't strive for perfection, lord knows I don't want my children to think they have to be perfect. I just hope that I can reverse some of the negative things I feel I have instilled in them. You know, like not freaking out that a car is going to back up over them in the parking lot, choking on a hot dog, falling off the earth, that kind of stuff.

Wednesday, June 9, 2010

School's out!

We are on the second day of summer vacation. While my other kids are completely content with sitting around and watching t.v., Mary is not. Mary starts her day riding her bike down the driveway to pick up the newspaper, she also gets the mail for me this way. Then spends the rest of the day asking what we are going to do. I took yesterday to clean the house, do laundry, and try to get things in order so I can devote the rest of the week to occupying my children. This basically means that I will be devoting my days to keeping Mary busy, while my 11 and 12 year old watch t.v. Of course anything I have planned for her, the other two will not be interested in. If it were up to them, we would be out doing something everyday, which of course will cost money. Money I do not want to spend on a daily basis. Mary is perfectly happy doing things around the house, crafting, swimming, bike riding, etc. My problem is that Mary likes doing all these things.....all the time! We will start something, then she will want to stop, do something else, and it goes on and on. If she is not engaged in something, she will say "what are we gonna do today?", over and over. So I will take a deep breath and try to be as patient as I can!

I do have some weeks here and there when they are in different camps, it's all the in between time that is going to drive me crazy! Somehow in the middle of all of this, I still have to do the things I do on a regular basis just to keep this family running smoothly.

Monday, June 7, 2010

Welcome to my playground

Things have been pretty much the same around here, still waiting to get medications straight. Waiting for the Dr. to get back from his vacation to discuss some things, also waiting for school to be done. So I have been sitting around trying to think things through, trying to not get too upset about things.

I often think of the inside of my head as a playground. There is a swing, a see-saw, slide and a sandbox. Most days are spent on the swing, going back and forth from one thing to another, whether it's dealing with my children or just my thoughts. My favorite thing to do is sit in the sandbox. In the sand box I am content, all is well in my world, if sand is thrown at me, I can brush it off and happily go on playing. Sometimes I hop on the slide. I am up really high, then boom slide right back down. Don't care for that too much. I go back and forth between the slide and the see-saw. Up & down, up & down. Makes me crazy! I just want to sit in the sandbox! Then there are days, when the storm comes. At the first strike of lightening, there is chaos. It's raining, and windy, everything is swirling around. I cannot play. These days come when either I don't feel well physically, or I am worried about something involving one of my children. I literally feel like my brain will explode. You would think someone with this much insight to the inner workings of her brain would have more control over it all. No, not me, and I've been in therapy! I'm sure there is a pill I can take to put me in the sandbox permanently, but what fun would that be! It is my hope, that the more observations I can make about my feelings will eventually lead me to just a little bit more control.

I guess when you really think about it, I do have control over it most of the time. Otherwise I would have been institutionalized a long time ago!!

Wednesday, June 2, 2010

EEG Results

I posted a while back about Mary's recent EEG. We have one every year, and this year I posted how I realized I had lost hope that the results would change. Well, guess what? We got a call today, that while her results were still abnormal, they had indeed changed. Of course, this is the story of my life. We don't get to see the Neurologist until Oct. so we have bits of information. It seems there was no seizure activity while Mary was awake, but there was while she was asleep. What exactly does that mean? Well, according to the nurse who called, it could mean it is possible she could outgrow the seizures. For me, this means it is one less pill I will have to give her. Considering her seizure meds may also possibly (love the words possible, possibly ) be affecting her behavior, who knows what will happen if she stops taking them. As I said, at one time all I wanted was for the seizure activity to go away, now I just want to know what to expect! I know I am asking too much, and I really have accepted that this is how it will always be, but still.....

Do I want her to suddenly wake up one day and be just like my three other children? I have to honestly answer no. I know that things are the way they are for a reason. My other children are better for seeing all that Mary struggles with. There is something wonderful in the saying "ignorance is bliss", because Mary, most of the time, is oblivious to what is going on around her. Yes, I know she is aware of more than I know, but she very quickly will happily move onto the next thing. And, as I have stated in a previous post, Mary is the most compassionate child I have ever seen. I believe, one day, she is going to do great things with all the love and compassion she has for others.