Today I saw a little glimmer of light

It's been a very long road for Karsen's speech. We see his speech therapist once a week and have been doing a ton of work at home here and there with oral motor (feeding, drinking, stimulating his mouth). It's been a lot of work with very little progress. There IS progress though. It's the little things, like his lip closure on spoons, his ability to drink out of a straw with out biting it.  He's getting stronger and is getting there. As far as speech goes we've only really gotten him to make the "ah" sound, which he consistently uses on a daily basis for just about everything his pitch and tone just change with different things.  He's also been able to make the "eye" sound here and there, not a ton, but he has. Every now and then we'll hear an "ee" sound. As you can tell, we've had to take things very slow with Karsen. Ive had my moments of doubt and have voiced them many times to his speech therapist about him never talking. She's squashes those feelings right then and there and has always reassured me he will, it is just going to take a long time. He's having to fight through a lot of brain damage to make this happen. He's amazing, it's not surprise. Well, today my sister called and Karsen wanted to say hi. I told my sister Karsen wanted to say hello. I heald the phone to his ear (he's done this before but all that usually comes out is "aaahhh") and told Karsen to say hello. Next I heard a sweet noise I have never heard before, an "Oh" noise!!!! and it was even dragged out and changed in pitch. He was trying to say HELLO!!!! I pretty much hung up on my sister after I squealed with excitement and immediately called Karsen's speech therapist (whom happens to be a good friend). Tried to get him to say hello to here, he kept shaking his head no. lol I then asked him if he was going to be a turd. "ya" his response. Smarty pants. It's just a glimpse but I can see that we will get there. Still working on quite a few different noises but this is a huge step for him after months of work. So proud of my little man. 

Be thankful for today, be thankful how easy it is for you to form words to make speech. Something I never realized could be so hard for one tiny person (or not so tiny person). He's so strong and has come so far. 

Reading too much may be bad

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.