As we are heading into the end of 2013, I find myself doing a lot of reflecting about the end of 2012. It is interesting to me that the struggles of life change so much from year to year, and our ability to cope changes so much too.
Last year at this time, Matthew was stealing candy, struggling in school, at the lowest point he has been with food obsessions, and I was looking to get him into respite and the psychiatric hospital. We hit our lowest point ever on New Year's Eve.
Matthew was last at Healy House in February, I have not even called for a placement since then.
Obviously, given where we were last year at this time, we are really flying high this year. That said, each of us adjusts to our norm, and that is where we live on a daily basis. I know myself, I am just feeling tired like I wrote in my last post.
What I am never completely certain about is where the other two boys stand. Tonight I got another reminder, that I have to keep life in check and be aware that while I am feeling like we are all ok, because we are better than we had been, the boys do not judge our life against the past, they judge it against the life they hope for, the lives their friends live. The lives that include play dates that are stress free, and big brothers who make life fun, not so challenging and unpredictable.
I live knowing what our worst was,and anything better than that I can live with and feel pretty good about. I remember there were times that we have had the police here multiple times in a week. There were times the little boys needed to be picked up and removed by friends multiple times in a week. We are doing ok, by the comparison to all of that.
Jacob and David and I spent the evening watching Karate Kid. We snuggled under a blanket and just loved being together. Matthew watched tv in a different room, and was pretty happy. After the movie was over, I sent the boys upstairs to get jammies on and I thought we would read books before bed. What should have been the end to a great day!
A few minutes later Jacob came downstairs and was obviously upset. I hadn't heard any screaming and had no hint that anything was wrong. When Jacob wouldnt tell me what was wrong, I called Matthew in to find out what had happened. After going on and on about how Jacob was mad, and how Jacob told him he was going to hit him, I finally got the whole story from Matthew, that Matthew had teased Jacob and mimicked how Jacob talks.
Jacob is a little guy who is very, very aware of his speech struggles. He knows he is not well understood, he knows that he has trouble pronouncing words and he works his butt off in speech therapy and has since he was 18 months old. To have Matthew tease him for his speech is a low blow, especially because it came out of nowhere, all Jacob was doing was putting pajamas on.
As Matthew admitted what he had done, Jacob burst into tears that he was going to get a suitcase and he was moving out of our house. He cried and said he would only stay with a lock on his door so he could be alone when he wanted to and be upstairs without being teased.
Every family obviously has these moments we are not the only ones who struggle like this. The difference is the intensity this all comes with and the pure exhaustion. It is tiring to be Matthew's brother. It is the same over and over and over again. It is stressful, because the boys never really know when the anger is coming. Almost every bedtime ends with a mania moment for Matthew, so there is an odd teasing or name calling or increase in unpredictable behavior right before bed. It is truly enough to make me uneasy each night, and I am the grown up. I cannot imagine being Jacob and David and dealing with this every single night. Every......Single.....Night.
Because Jacob is the brother who will react to Matthew, Jacob is the brother who gets bullied. Jacob is the brother who is the target for matthew's intensity. Jacob is tired. He was clear tonight that if he got a choice Matthew would go to Healy House.
That is such a big statement from a 7 year old. It is heart wrenching and yet it is a statement that I so completely understand. Unfortunately, on top of Jacob already feeling tired, I just found out that Matthew's respite provider who works on Sundays is moving and so this would have been his last Sunday with respite, but it was cancelled because of the weather. This respite truly has been a savior for us. It has been the time that Jacob could have friends over, it was the time that Jacob could enjoy the quiet in the house. I strongly believe that it has been the respite on Saturday and Sunday that has contributed to Matthew succeeding over the past few months, and now it is ending.
My hope is that by the end of January we will have a new respite person in place, but there have been many times that it has taken months to find a new respite provider. It seems like it is one of the hardest jobs to fill, and we have been blessed to have some great providers, but the wait between providers can be full of anxiety.
I am so thankful that the last almost 365 days have been days of growth and development for Matthew and my entire family, but on a night like tonight even the growth that he has shown is still overpowered by the struggles he has. I will keep working with Jacob to help him understand that which Matthew has control over and those parts of Matthew that he doesn't have complete control over. I will help Jacob to understand that it is ok to feel what he feels, and that it is ok to be tired of being Matthew's brother. I will let him know that at times I am tired too, and even more importantly at times Matthew is tired......because when we get right down to it......I believe that it is truly hard to be Matthew in so many ways.
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