Today is just one of those days. A day where you want to crawl back under the covers, and sleep your worries away with the rain drops. In running my daily car pool this morning, trying to get everyone where they needed to be, I had a million things on my mind. I need to get to they gym, what will I make for dinner, making out invitations for the bridal shower, etc etc. I would have given my life savings for just one more day on the beach where all I had to worry about was keeping Frankie from getting too much sand in his eyes, and making sure Liv had enough sun screen on. Reality was slapping me in the face though, and I didn't like it, not one bit.
I have to confess, vacation made me think about just how hard the past 18 months has been for our family. It is the first time that things have slowed down enough for my mind to wrap around everything and try to process it all. This was a double edged sword, because although it allowed us to relax for a period of time, it also allowed everything to really, really sink in. For me it has brought emotions to the surface, emotions that I have been ignoring for quite some time.
I am mad. I am worried. I am scared. I am exhausted. Now, I know that all of these are negative, and yes, I am also happy, excited, and hopeful. The positive ones are easy to show, but the others, they tend to stay hidden deep down in a place that only I am allowed to visit. All of this time, I have tried to keep a positive attitude, to look at all of the good things, while deep inside, the negative ones have been slowly chipping away at my spirit. I need to be honest with others, and most importantly myself.
I'm mad. I'm mad that my boy, my beautiful, blond headed, brown eyed, baby boy has Autism. I want to know why he has it, what has caused it, and what I can do to make it better. I want to know why he has to try so hard to master simple tasks. I want to know why he can't do or experience all of the things that his sister can. It is true. All parents who have a child with a disability always tries to let their child do and experience everything that other kids get to do, but I'm just being brutally honest, sometimes you can't. I can't take Frankie to a place like Chuck e Cheese, it is a painful experience for him. I can't take him to a bunch of ball games, because the crowd and the noise, it is just too much for his little sensory system to try to process. Birthday parties, they are supposed to be fun, but we usually have to leave before they even cut the cake because all of the kids overwhelm him. Yes, we try to do everything that he can, but some things he just can't do, not yet.
I'm worried. I'm worried about Frankie, and all of his treatments, therapies, etc etc. I'm worried about Liv. I'm worried because we have to devote so much time and effort toward Frankie, that she will feel left out. That she may get over looked at times, because we are focusing on her brother. Trying to balance raising more than one child is difficult even when everything is perfect, but when one child has a problem, it magnifies it even more.
I'm scared. I'm scared that things may not get much better than they are right now. Frankie is making huge progress, and is doing well, but that doesn't give us the green light that all will eventually be OK. No therapist, No doctor, No teacher has ever said that everything will be alright, and that he will be able to grow and experience life just like everyone else. They say that we are on the right track, that we are seeing positive things, but they never tell you that your kid will be a good case. They don't know, and we don't either.
I'm exhausted. I am tired from worrying, from staying up at night, wondering what I will do tomorrow to make things easier for my boy. Having therapists in my house almost everyday of the week. Trying to take Liv to extracurricular activities to make her feel as important as her brother. Trying to keep a constant eye on Frankie, because at any given moment he may be climbing up the outside of the staircase to the top, or unlocking the door and running out into the street, or trying to jump in the creek, or eating the end of the pacifier. Constantly putting things in his mouth, pooping out beads off of Livi's purse, you name it, he has done it.
Maybe it is because today is a rainy, gloomy day, and my mood is the same, or maybe I felt like I had to get all of this off my chest and out in the open. I feel though that I need to be honest about this journey. There are people that ask my opinions on their children who are going through this process, and they need to know that it does stink sometimes. It isn't all happy and positive thoughts. It is a struggle some days to make it to the end of the day without crying at least once. Then there are the good days. The days where Frankie will do something new, or say a word, just one word. Where he climbs in my lap and kisses my face a hundred times, because that is how he tells me he loves me. The days where he and Livi play together, and laugh out loud at each other. The days where she is concerned about his every move, just like a mother hen. The days where daddy gets home before dark, and we can all eat dinner together. Those are good days.
Being a parent isn't easy, in fact, it is pretty freaking hard. It is hard whether your kid is normal, or if your kid isn't. It is hard whether you work full time or stay at home. As hard as it is, it also is wonderful, exciting, and filled with joy that just overflows my cup. If I could make my baby better, I would in a heart beat. The people who say that they wouldn't change a thing, they are really lying. I would make things easier for Frankie in a second if I could. I didn't chose this for my child, but I have to trust that the Lord knew best when he gave Frankie to me. He has filled my heart in a way that I never knew was possible. He captivates everyone he is around. I LOVE him just the way he is.
Tomorrow will be another day, and it could rain and pour, or just maybe the sun will come out.