I recently started reading a book written by a fellow CP mommy. The books goes over their entire journey, from the minute they were expecting and finding out a diagnosis, to all of the middle stuff then to date. Her daughter is now 18 years old. I really enjoyed the book, most of the time, finding comfort in knowing someone else knew what I was going through. At the same time, it was really hard to read about the struggles through school, IEP's and ultimately making the decision to home school. It all was very overwhelming. Stuff I didn't even think to look into. Obviously we have a while before we have to worry about that stuff (actually we will have our first IEP with in the next 6 months so I guess it's not that far off) Our little bubble of denial that got thinner and thinner each month, now seems to be nonexistent.
In the beginning of our journey, I remember the week Karsen was diagnosed, my husband and I talked about how he just needed physical therapy to catch back up. That's it. Just PT. Oh, how naive I was. No one can tell you your child's future, no one can tell you what the road ahead looks like. No one can tell you your child will never talk, as well as telling you they will absolutely talk. I wish there was a crystal ball, tell me what is in front of me, what I can leave behind me and what to look forward too. But that will never happen, and that's ok.
This past week has been an especially hard week. Karsen has started hitting and throwing giant fits, it's beyond typical two year old behavior. Over the last weekend, Kuper and I decided to take the boys bowling. It was fairly close, the bowling alley was most likely not packed and we had no plans. Seemed like a good idea. Well, it wasn't. It was the WORST, and I'm not exaggerating, trip out of the house. Karsen did not want to sit still, he didn't want to wait, he tried to hit me (which he succeeded 80% of the time with perfect palm to face contact) back arching, throwing his body backwards over and over again, hitting himself screaming. This happened over and over again. Kuper and I did our best to keep our composure, we switched holding Karsen, trying to distract him, letting him help us on our turns when all I really wanted to do was curl up in the fetal position and cry. It was exhausting. I wanted to finished our game, I wanted to have fun, I wanted Karter to have fun, I wanted to feel like a normal family. It felt the exact opposite. When we had finally had finished our game and worn out our welcome, Karter and I headed to the car slowly behind my husband and Karsen. I started feeling like I was going to burst into tears, but in that same moment of me having some serious self pity going on, Karter looks up at me and says "That was SO much fun mom, thanks for taking me." OK, we did something right. Our attempts of trying to still enjoy the moment with our oldest worked. I was proud in that moment. Those happy feelings went instantly away when we got home and Karsen immediately started his fit, running away from me. This time, it was 100% because of the lack of communication. Have you ever watched a tv show where all of the people in that instant take were yelling, maybe one was crying, one maybe screaming... you know, the ones where it makes you feel like your head is going to explode if you watch it anymore? It makes me think of a few episodes on Parenthood. Well, that was my life, in that moment. I looked at my husband and said "I'll be back" and just left. I didn't know where I was going or what I was going to do, but it didn't matter. I just needed to leave.I needed to get out of the situation, remove myself all together. My poor husband, as I just up and left him with our two monster children that were rebelling at that very moment. Sorry... Where did I go? The dollar store. Silly, right?! I know! But I just wondered. Looking at the cheap plastic toys, the cheesy craft supplies, and the oh so nasty not good for you in any way food. After 25 minutes of mindless wondering I eventually ended up at a local Mexican restaurant with my girl friend where we had margaritas while she listened while I vented and cried. I'm so grateful for this friendship. She too has a special needs son, our stories are not the same but she gets it. She knew that I just needed to let it out. Those ugly nasty feelings that we shove deep down that have their way of coming up at the worst of times. They have to come out at some point. So there they were, feelings out ugly and all. By the time we left and went our separate ways I began to feel a bit more normal.
I still have my moments of shock, my moments of feeling like this isn't where my life should be, life shouldn't be this hard. I'm only human. I have my ups and downs. I have my moments of feeling weak and my moments of feeling strong. I'm am me, and I know that's enough.
I really have no useful words of wisdom today. I'm no longer in that place I was that day, my friend and a few margaritas helped ease the pain of that day. I'm STILL trying to learn to take things one day at a time. To stop trying to find that crystal ball to tell me the next year or the next month. We are still in the process of trying to figure out how to stop the hitting, how to discipline a special needs kid that can't talk but understands close to everything we say. I guess if I had any useful words it would be to be patient, and even though there may be times where you just want to curl up and cry try to take a step back and and reboot, hold your child, hug your husband, hug yourself. Tomorrow is a new day.
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