will someone hold my heart?

One of my most favorite musical artist is Sara Bareilles. My pandora radio station is usually always set to SB. Her music is beautiful and I find a lot of inspiration listening to her words. If you are reading my blog right now, chances are you are hearing one of her songs playing. “Hold my heart” is the latest song I’ve added to my play list. I wanted to add “The light” but it wasn’t available to add. You can click on the song and it will take you to her latest album and you can listen to the entire album, or choose which song you’d like to hear. Anyway, the point of this post is to express some of the feelings I’ve been having lately. There have been a few small glimpse’s of Sanfilippo showing it’s ugly face in Livia’s beautiful life. I received an email last week from one of her teachers expressing that they have seen an increase in Liv’s aggression. This was a HUGE heartbreaker for me. While reading the words in this email, my heart fluttered and my heart was once again sitting in my throat. No one wants to hear this. I really didn’t know how to address the situation because we are not seeing this behavior at home. I emailed the teacher back telling her that we will address the situation and want to resolve it in the best way we can. I contacted her genetic counselor to get some advice, which helped somewhat. I then talked with my angel of a friend Stefanie Boyce. She is one of the wisest people I know. She offered support and insight to what they have experienced with Jayden. I have a feeling that our lives will mirror theirs. Unfortunately, SS will show it’s ugly face in their family first………….maybe. Anyway, after pondering over this situation I emailed the teacher back and expressed to her that I thought this was Livia’s means of communication. She is not able to use her words like she wants, and so an uncomfortable situation or dislike or want that she is unable to get across is probably resulting in frustration. Being Livia’s mom, I’m bias to her. Meaning, she is mine. I love her unconditionally and she is an angel in my eyes. Even through Sanfilippo, my heart will never waver when it comes to loving my child. I know, however and unfortunately, there is a stereotype associated with a difficult child. I mean, not only do they have to deal with these aggressive behaviors, but they are changing her diaper as well. I know, I know, it is their job, and they wouldn’t be doing these things if they didn’t choose to. I just don’t want any animosity or ill feelings towards my child. I want people to see her for the person I know she is. The girl who loves to cuddle with her mommy and giggle. The next thing isn’t big, but it’s another “thing.” Livia now has to wear a harness vest thing on the bus. She was being double buckled and we gave her her barbie to keep her hands occupied as to not unbuckle herself and get up. I’ve delt with this in the car, as well. Having a child get out of her car seat on I-90 in the middle of rush hour is NOT FUN! Liv’s bus driver is so kind and soft spoken. She has been very honest and tried every option before going to the vest. It was time, though, for everyone’s safety to change Livia’s IEP and put her in the vest. Today was her first day in the harness. Next thing, Livia’s diapers are getting to tight. She is in the last size that you can buy in the store. Luv’s are about the only diaper that seems bigger than the rest that we can get away with putting her in. I’m not ready to go to the medical supply store to buy bigger diapers. It’s something that I know I’m going to have to do soon. Her chewing has increased……A LOT! If you come to my house and pick up a Barbie, they are either missing both feet because I’ve amputated them due to Livia’s chronic chewing. OR, they are about to be amputated. She is getting small pieces of plastic off of them. I know I shouldn’t even let her have them to chew on, but it’s her preference. If I try to put her favorite Barbie of the moment out of sight, she will cry for it. She asks for it and uses the word Barbie. I guess I kind of feel like I’m rewarding her for using her words. I’ve thought about looking into the “chew toys” that other families have used, but I am not ready to have those in my house. It’s all denial on my behalf. Putting all of these issues off or aside is doing Livia no justice. It’s putting my feelings in front of her needs, which I know better, but I’m just not ready…………or will ever be ready to let Sanfilippo in. You see, this scary, uncertain, heartbreaking reality is my reality. It is something I live with and is in my world 24/7. Somedays I just want someone to hold my heart. I read scripture and my Faith carries me through each and every tough and not so tough moment of my life. But it is in the front of everything, everyday. It’s not going to get any easier from here. So, how do I deal? I find the right time to go buy bigger diapers at the medical supply store. I figure the chewing thing out, when I feel it is time. We deal with the school issues in the most open and honest way possible. We NEVER want enemies. I have no desire or have no time to put effort into being the mean possessive I’m always right mom. We just deal. We make the adjustments and just enjoy today. I guess, in a way, I’m glad I get Livia the way she is. She is easy, loving, and her salvation is secure. This is something I reflect on so much. It’s the reason why I’m choosing to put God first in my life because I know that if I continue down the path I’ve chosen, one day, Sanfilippo won’t be in our eternal life and we will be together in divine happiness.