Smiling through the pain

People will tell me all the time that I am so strong. I appreciate the sentiment but I sure don’t feel it at times. Part of my problem is that I don’t like to let people in and I especially don’t like to be emotional in front of people. I can have a pretty tough exterior but it’s the things that people don’t get to see that show you the truth about someone. I have known families that lost their children and I see their post on Facebook and I can’t imagine how they feel but I'm sure that they have a lot more hurt than what they write. Nobody sees me when I’m lying in bed and I’m praying for Skylar and crying for hours on end or when I get a call from ARORA and they are explaining their process and to her I sound like I am very understanding and upbeat but the truth is every time she starts to talk I start to cry. Sometimes this gets the best of me and I’m not ashamed. I am a mom whose heart is breaking and no matter what I do the outcome will remain the same. The worst Skylar feels the more emotional I get. I hate that I am at work and I know she’s having a bad day at school. I want so bad to take her home and love on her. I am anxious and on edge the entire day. Seeing her is about the only thing that calms me down. I know that she’s here and safe and I can be with her. It’s something about being away from her all day and finally getting to see her again that puts me in a peaceful place.

I think I also punish myself. I like order and I like to plan things. It’s my nature and I’ve always been that way. The same applies to Skylar and this situation. I wanted everything taken care of so that I could spend all of my time and energy on just her. I didn’t want to have to plan anything after the fact. Planning it while she is here is hard enough, but I am still able to face the hard things and go home to her. I know that I wouldn’t be in a place to make these decisions after the fact. I’ve been able to think about what I would want and how I would want it. However, it takes a toll on you. It’s hard to plan a funeral for your child and pick out their casket and where they are going to be buried. I don’t think that any parent should ever have to do that. I had to go visit the funeral home on Saturday to get a quote for the headstone. I was there for over two hours talking to the funeral home director about what I wanted and how I wanted it to look. It’s going to be a custom headstone...Imagine that. Just sitting there and going through the process I’m not sure how anyone makes the plans after their loved ones have passed. To be honest I wanted to punch the lady by the time it was all said it done. She was very nice and I consider myself a very patient person but she was really pushing me to my limits. I can only imagine how people would feel trying to plan all of this right after their loved one passed. It’s overwhelming and frustrating and heart breaking. There are still some parts of it that I still can’t seem to want to think about. I try really hard to get things in order and to plan as much as I can so I can avoid it being thrown in my face all at once but it just makes things seem so real. I had someone tell me that it’s very sadistic to think about all of these things and plan it out. It may feel that way to them but I want to be in charge of my decisions and the things that I want and I just know that I will be too emotional to want to deal with any of it and I would regret it.

I’m not sure how to do this and I have really bad days and they seem to be coming more often and last a little bit longer. I pray every night for strength but the truth is I’m devastated and I want to scream some of the time. I’m mad that I have no idea what the future holds and it breaks my heart that Skylar might not be here on some of the biggest moments of my life. I want so bad to not work and stay home with her and spend every day of her life with her. I have to take it one day at a time and that’s really hard on me. It’s something new every day and by the time the day is over I am exhausted. Days like today make working and everything else seem so insignificant. I have spent at least a few hours talking to doctors, the nurses and her teacher and the only thing that I can do is sit at work hoping that her day gets better. My heart aches on the bad days because this is not what I want for her. I miss her laugh and her smile. I haven’t seen it in days and I fear for the day that she’s having such bad days that I don’t ever see it. If I seem strong it’s because I have a daughter who has taught me so much about life and how to be strong. She has taught me to smile through the pain because that’s all she’s ever done. God has given me the strength to be the mom that I am but Skylar has shown me the kind of strength that I need to carry on and not give up. She continues to be strong so I will continue to be strong for her. Especially on the days that she can’t be.