It's so hard

I have been fighting some demons for a while now. I have been trying so hard to stay positive and smile through all the pain, but its getting harder to do. Every time I see something we bought for Amelia or said we wanted to do with Amelia and can't it hurts. My heart is so full of hurt right now that it's hard to put a smile on my face. It is hard to even pretend any more. I am starting to become angry. Angry at myself for what happened, angry at everyone who is flaunting their perfectly healthy babies. Angry at Matt for no reason. I am sick of feeling this way. Sick of feeling the tears streaming down my face all day. Sick of praying for Amelia to over come obstacles that she shouldn't have to face in the first place. 

I am sick of peoples comments "oh, but she's so beautiful" "oh, she's fine" "oh, just pray about it" "oh, be thankful you have a child" I know these comments aren't meant to be hurtful, but they are. Her beauty and her happiness have no bearing on the fact that she has struggled for the past 14 months. The fact that she has had to have 6 brain surgeries, hip surgery and casted, wear a helmet, have extensive therapy, hospital stays, doctor appointments...doesn't make it any easier because she is pretty. She is NOT fine. She has multiple things wrong with her and she struggles daily. If you don't know, don't say anything. I pray, I have prayed for the past 13 years, and non stop for the past 14 months. Yes it is a miracle that she is still here and that she can do some of the stuff she can do, but it doesn't make it easier. It doesn't make life easier to see 9 month olds walking around and your child can barely sit up. It hurts to see that. I am NOT hurt that these children can do it, but that Amelia can't. People like to tell me I am rude because I don't like seeing that. I can't help it that it makes me upset that my daughter may never walk. People always seem to think that it isn't that hard to deal with something like what we are dealing with. I am just glad they don't have to go through it and I would NEVER wish this on anyone. 

The internal fight of having another child is another thing that hurts. Matt would LOVE to have another child, as I would too, but I just don't know if I can emotionally handle it. Or physically to be honest. I think a sibling would help Amelia in a lot of ways. I think she would love having a brother or sister, but is that just the selfish part of me talking. I don't think I would be able to handle all the "normal" stuff that child does. It will hurt that it comes easy to him/her but Amelia struggled to do it if she could do it at all. 

Do you know what is really hard? Having to discipline your child for ripping off her eye patch. Something else to add to the pain I feel. I have to scold her for messing with it. Something that all other mothers take for granted and I have to scold my child and make her upset with me yet again. I know I am doing it for all the right reasons, but it doesn't make it easier. The bad part is that it doesn't seem to even be working. 

Why does life have to be so hard? Why do the tears have to come when thinking of my child? Why are people so rude? I would love to surround myself with family and friends during this hard time, but they aren't anywhere to be found. Well, that's not true. I know I can count on my aunt, cousin, sister and Grandma. They have been there for me since day 1 and I know they will be here for me in a second. But they are so far away. I can't call anyone and say "hey, I need a break, I need to take an hour to myself". There are a couple of people who offered, but these people also don't listen to what we say about watching her head, not giving her certain things, etc. So not only am I stuck at home/at doctors/at therapy alone, I don't have anyone to lean on for support. This is starting to take a toll on my marriage as well. 

I just wish for once that something would go right in my life. Just one thing is all I am asking. Let one thing be easy for Amelia, or let her do something major that we were told she wouldn't do. Let Matt get onto a job where he is making full scale and we aren't wondering how we are going to pay the bills or how we can make it work so I can go back to work so bills will be paid. Even something as small as someone here who said they would be there for us to actually be there for us. I've written everyone off because they aren't worth me worrying about, but it would be nice to have someone to talk to. 

Please pray for me. Pray hard because the devil is trying something fierce to get to me. He is wearing me down. I am still standing strong in my faith, but it is getting harder and harder to do. 

Merry Christmas

For those that personally know me, you know that Christmas is an extremely difficult time for me. Even having Amelia it is still a rough time. There are people who think that they know what will make me like Christmas but they don't know that Christmas will never be a happy time for me. Yes I think that as time goes on and Amelia gets older I may enjoy it more, but being so far from my family will make it so I will not enjoy it much. 

This year all I wanted for Christmas was to be with my family. The people that for the past year have surrounded me with love, kindness, and comfort. The people who called/texted/emailed/facetimed all the time to talk to or check on Amelia. The people who worried as much as I did every time Amelia went to the doctor or for surgery. I wanted to surround myself with them and smile and actually mean it. Money is always an issue with us. When we have a little money we never have time and when we have time we never have the money. Matt was determined to make me smile though and said we will make it work. (Leave it to a man to say that when he's never balanced our checkbook or paid a bill in the last 15 years!!). 

So we packed up and headed north. Prior to Amelia a trip to my sisters would take just over 8 hours. We would eat in the car and just go. With Amelia it was almost 12 hours. Stopping for an hour for lunch, an hour for dinner, stops to change diapers and give meds. We didn't tell anyone we were coming except for my sister. On Christmas Eve (a few hours after we got in) we went and checked into a hotel out by Grandma's and then went to her house to surprise her. My sister took her to my uncles and said her surprise was here (everyone thought she was pregnant). It was so nice to be able to walk in and get greeted with open arms and happiness. 

We had a great time and I got the best Christmas gift I could ever ask for!! 

Happy 1st Birthday

I know this is really late, but I am finally getting the courage to start posting again. I have to build up enough emotional energy to make a post and with so much going on the last few months I couldn't do it. 

I can't believe my little baby girl is 1!! I love seeing how far she has come in this past year. She is the sweetest, happiest, most loving baby I've met. 

Her birthday party was awesome. Well, I guess it was as awesome as you could get with over 20 people saying they will for sure be there and never show up. There are 2 people in particular that really disappointed Matt, but they will never care. I am so, so, SO thankful for my family who traveled from MI, FL and WI to come celebrate with my little bug. 

The theme was pink sock monkey and I think everything came out cute. I did the baking/cooking and Lisa printed all the decorations, so for being amateurs the party turned out cute.