I want Aly to have as normal of a life as possible. When you have a kid, you make plans for them and dreams for them and right now I don't know how high and how far I should be setting the bar for her. I don't know what normal is going to be for Aly, and that is really hard. The last few weeks since we've been out of the hospital have been very good, but going back to the hospital snapped me back to reality. It was naive to think that she'd be able to survive this much damage to her brain without some kind of problem to show for it. It's hard to reconcile how much she has already been through, with how much she has overcome and finally how much she has left to work against.
Yes, Aly is a fighter and she's already fought some extremely tough battles. But there comes a time when you just want to stop fighting. You can only fight so much before you have to tap out. Hopefully Aly will be stronger than I and keep going even when I just want to lay down and stop trying. Aly is a tough little cookie, but its sad that she has to go through this now. Most people don't have these kind of obstacles and they never have their strength tested this much. She's only 9 months old and she's been through more than I have in my whole 28 years. Hopefully we can all get through this, we have to. I know we will, but today I'm just not feeling too optimistic. I wanted to make a more positive entry tomorrow about how it's been a month since this all started, but I'm not feeling that at the moment either.
It's hard lying to people and telling them your baby's fine, because she looks fine, but you've just heard about how her brain is still a mess and still having to field people's questions about what happened and not having an answer. It's hard both worrying about her progress and at the same time getting excited about how much she has regained. It's hard comparing your child to other children. That's something that is hard no matter what your child is going through. That is something I keep telling myself to stop doing, because it only leads to madness.
Hopefully once I see the doctor and maybe get some answers (if any) I will feel better. But right now I am away from Aly and I can let myself ride the "feeling sorry for yourself" bus. I can be strong for her later when she needs me. Sometimes it's just hard to be strong.
GO ALY!
My heart goes out to you. The unknown is a scary thing face, especially when it comes to the health of your child. I hope that whatever negative you have been told isn't the outcome for Aly. I hope that as she gets older she progresses and hits the milestones that are"normal" for her age. I don't know all the details of her condition, but maybe the swelling hasn't caused her to lose any capabilities? I hope she is continuing to make progress and that you will start to see some of the answers you are looking for. She has such a sweet smile! Try to keep your spirits up, even though it's hard some days. You have our support no matter what kind of day you are having! Continued prayers and well wishes for you, Ben and little Aly.
ReplyDeleteAs always, thank you for taking the time to comment and reassure me. I really appreciate the support. Are we friends on facebook? We should be. :)
DeleteYou sound like me through my surgeries.. People would just tell me "I just don't understand I"m sorry I don't know what to tell you"... it hurt a lot when people did that because I really was struggling with some messy feelings and just needed a friend.
ReplyDeleteOddly enough I can tell you aly's side of it.. I know I've told you already that i have brain damage.. mines differen't I lost my complete long term memory.. people here that and go.. "what is that like"
It's impossible for me to describe completely or even compare to other people.. because This is me this is how I grew up.. my brain is all I know and I can't really tell you what it's like without knowing what it's like having a normal brain.
I really hope you guys know that I am here for any and EVERY question you could have about what it could be like raising aly in school. and with other kids. just know that Aly is going to grow up knowing nothing else and the only thing she will want is to be treated normal. she's still your little girl and to her nothing has changed. just keep that in mind. and please ask me anything I really know a lot about it because well.. I lived it.
Love aunt,
Kristy-Bear
Thanks Kristy. I actually have a lot of questions for you. We have an appointment to see her neurologist on Sept 4, so I will probably be asking you after we get all the doc questions out of the way. I'm glad you are able to offer some perspective for us. :) Aly is lucky to have you as her aunt.
DeleteYou are describing what I felt when I first found out that Alyzea had a heart defect, but on top of the what is her future going to be like, I sit here and think when she is going need open heart surgery? (the doctors tell us that its up in the air on when, but sometime in her life she will need it.) Then when I am really down I sit and think about if I hadnt have fought with doctors, if I had just went with what they said when they were telling me that it was a cold. I would have lost her. As it was she was in CHF, and was in a really bad place.
ReplyDeleteBabies are really strong and tough, Alyzea and all the other heart babies have shown me that. Some moms on babycenter ask if it is wrong to morn the fact that there child had a heart defect and that they would never be able to play sports or run around with other kids. The answer is no its not wrong, you expect great things from your children and when that gets taken away it hurts.
As Alyzea's cardiologist told me, if you sit there and think about all the whats if you will miss out on your child's life. If you want to talk get ahold of me.
Thank you so much for this comment. Sometimes it just helps to know someone understands. Even though we're not going through the exact same thing, I'm sure a lot of the same emotions are involved. :) I'm gonna have to go check out your blog.
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