A little rant

Since I am already crying, I might as well go ahead and write this post. I understand that a lot of people, most people, do not even come close to understanding the daily struggles Matt, Amelia, and I have. I know some people think they are being helpful, or maybe they don't, they just want to put words out there and don't care what they mean. These words can hurt so bad. Especially when they come from a parent that has never had to deal with any type of struggle remotely close to what we have been dealing with for 22 months.

I have no idea why anyone in their right mind, who knows any part of our journey the last two years, would say that Amelia is fine. Just the fact that she is 22 months old and can't even pull herself to stand consistently, or stand on her own should be enough to show you that she's not fine. She has been through 9 brain surgeries in 22 months. Again, that isn't something a child that is fine goes through. Please quit telling us that our child is or will be fine. It is not helpful in the slightest. What really gets me is when it is a parent who is literally crying and acting like the world is ending because their child has a cold.

Another thing that really upsets me is when people say "but she's so happy." Yes, my child knows how to smile, she enjoys certain things, but that doesn't mean that she's not hurting. I put a smile on my face daily because who wants to see someone crying all the time. When asked I always say I am doing well because who cares about me. Amelia must get that perma-smile from me. Her smile can bring joy to anyone and I am glad she can do that. But please don't mistake her smile for her being a completely health, normal child.

I was just reading through some comments on a post on FB I did a year ago (that is what stemmed this post) and one comment, from a friend I have know a very long time, made me want to drive 9 hours to punch her. Yup, I said it, I wanted to punch someone because of what they said. A year ago we were told that Amelia would need to be in her helmet until after her 2nd birthday (this was obviously before all the issues with the helmet and the shunt). I, with every right, was upset. She had to be in the helmet 24/7. So I posted about how she wouldn't get to enjoy her childhood because she couldn't go outside with the helmet when it was remotely warm because the helmet is extremely hot and causes a horrible heat rash. She couldn't go swimming because she can't go in the water with her helmet, etc. Well this person comments basically that I am being way too dramatic and just need to improvise and do a pool in the basement or whatever. Really? Because first of all we don't have a basement, second, if we did she STILL couldn't go in a pool because she has to wear her helmet 24/7. UGH

 Before you accuse me of being dramatic, please put yourself in my shoes.  With everything this child has been through Matt and I are trying to give her as normal a childhood that we can. It's not easy. We struggle financially, when we have money it's because Matt is working and that gives us zero time together, and the time we do have is usually at the hospital or doctors. People have NO clue what it is like to have a child that is almost 2 and can't walk. To go to the park or the zoo or the mall and see children way younger than her walking around. I can't even put into words the pain I have. It's not just pain for me (and my back from carrying an almost 30 lb child everywhere) but it's for this sweet little girl who wants to go and play. Seeing the hurt in her kills me. Most people have never seen me cry, but let me tell you I have had to stop 8 times to wipe my eyes and blow my nose right now. I hurt. Your words make me hurt even worse. I don't care that she won't remember this time, I will. When your weeks are filled with PT, OT, PT, specialist appointments, therapy at home, etc  you want to do something that will bring some joy to your child. Again, until you have walked a mile in my shoes, don't judge me.

One last thing (It is all I can really get out right now and I am hurting, frustrated, and angry). Amelia is NOT SICK. The list of all of her dx are medical conditions. You can't catch cerebral palsy from being around her. Your child will not all of a sudden not be able to use part of their body. Yes, I have been told that is why people don't want to be around us. Honestly, Amelia hasn't even really had a cold that could be passed to someone. She did have some congestion a few months back but it never did turn into anything. I completely understand people not wanting to be around us. It is not easy to be friends with someone with a special needs child. But don't leave my child's life because you are uneducated on her medical conditions.

I know there are not a lot of followers or people who read this, and that's okay. I just need to get my feelings out. There are days I just want to shut off the internet, turn off the phones, lock the doors and stay in forever. I want to protect my baby from the glares and stares from people. The comments I get about my kid being too old to be in a stroller and she should be walking. The comments about how I am raising a lazy child. But I do what I do best, throw on a smile and keep pressing on because Amelia needs a role model. Someone that will show her to not let anyone in the world knock you down.