Thing are starting to get better. Aly is, anyway. She had PT Tuesday and her therapist was impressed. She's scooting again, she can hold herself up on hands and knees and she doesn't wobble her head so much. She has physical and/or occupational therapy at least once a week this entire month. Busy busy.
I already feel like people have stopped caring about Aly and stopped reading the blog. Because Aly's not in the hospital, everything's fine right? She's not fine. I'm not fine. I don't think people can really understand how traumatic what we went through was. I almost lost my child. I could still lose my child. I don't even want to type that, but it's true. What if her brain swells again? We might not be so lucky...
If I knew what was wrong with her things might be different. I asked the doctor for warning signs and he didn't really have any. I guess if she starts seizing again. I don't like the uncertainty, the fear that something is still wrong and we won't know it. Even though we have a follow up in a month and another MRI next week, I also feel a little abandoned by her doctors. I have no one to call with questions, I don't think her Primary care doctor knows half of what went on. I haven't received any information about the tests that we were waiting on when we went home. They are so focused on getting her enrolled in rehab and this program called Early Intervention that I feel like the rest doesn't matter.
Even though I feel like people don't care, I know it's not true. One of our friends from the radio station started a facebook page for Aly and a donor account to pay for the massive bills we are receiving. People are asking about Aly every day. People are still rooting for her. It's less drama for people when she's not covered in tubes and hooked up to machines, so I should have known the massive outpouring of support was going to slow down. I always knew that it was going to be hard to transition back to real life. I don't even know what real life is for us.
Right now, I am working about 32-36 hours a week and Ben is working 40. We work opposite schedules, he closes and I open. This means he does not see Aly after he gets home. Her bedtime is right when he gets off work. Aly is used to getting up for the day around 6 am so it doesn't make sense to try and push her bedtime later, when I have to get up that early for work anyway. It sucks being a grown up and having to make sacrifices. Part of being a parent is putting your child first. Yeah, it would be nice to have Ben home to take care of her full time, or even me. But we can't afford it. Sometimes being a grown up means gritting your teeth and just powering through.
I love my daughter. I will do whatever it takes to make her happy and healthy. If that means we are in debt up to our eyeballs, I will do it. If that means her daddy only gets to see her on weekends, he will do it for her. Someday she will understand. Maybe not until she has a child of her own. Hopefully, she will thank us. We will cheer Aly on no matter what she is doing no matter how big or little the fight. I know sometimes the crowd will just be the two of us, and other times it will be the whole crowd.
GO ALY!
Dear Tori,
ReplyDeleteI just want you to know that people have NOT forgotten Aly. I talk to my Angels every single day, thanking them for blessing her, helping her through those tough times in the hospital, and for bringing her home safely. I continue to ask them to bless her, and bless you. You have lots of family and friends who are in this with you. You don't know me, but I know you and Ben, and I know what an amazing family you have. So, yes, we continue to pray and talk with our Angels for a complete and speedy recovery for Aly. Hang in there, and please lean on your friends and family whenever you need us. We are all here for you. Your fight is our fight too.
To Little Aly, continue your fight and I know that there are many wonderful, exciting things ahead for you. Continue to grow and improve and do what the doctors and therapists ask. It will pay off in the end. We are counting on you to make a full recovery, babe. Your mom and dad need you. Remember--We love you.
Stay strong! And know that we are here, reading your posts and praying for comfort, peace, and recovery for all of you.
Best wishes now and always.
Sandy Hiskey
(long time fan and listener of Ben The Producer and fellow "I Love Paul Blart" fanatic)
Thank you for such a sweet comment. It was just what I needed to hear and remember. :)
DeletePlease don't feel forgotten or that people don't care. My husband still asks me about "that cute baby I was praying for." We also pray for you and Ben, and send positive vibes. I don't know you guys but I think of you and wish for a complete recovery for Aly as well as contentment and joy for all of you. People may not comment on your blog or be as vocal as before...but we all still care. :)
ReplyDeleteThanks Lyndsie. I was in a bad place when I wrote this. It seems really whiny. I'm debating taking it down. :( Thanks for your comments and all the support.
DeleteYou should leave it up, it's honest! I'm sorry you have to keep going through this. I know you are always on pins and needles and that's not a fun place to be. You and Ben are terrific parents and I respect you both lots!
ReplyDeleteI'm so sorry that you feel like you have been forgotten! I assure you that you still have more people praying for you and following your blog than you realize. I would post a comment on every entry, but I'm sure you'd get sick of me :) Your daughter has touched so many of our hearts and made such a connection with people following her story. She is a remarkable little girl with remarkably strong parents. It's hard to imagine being in your shoes, but I have no doubt that on any given day that you need help all you have to do is let us know and you will have many strangers offering up their support in any way possible!The frustration you have with the unknown and the lack of follow through by doctors is completly understandable. Just remember that you are an amazingly strong woman, wife and mother with more friends than you realize. It's hard to continue living the way it has been and feeling like a single parent makes it even harder. but you hit the nail on the head when you said you do it for Aly. Our undying love for our children is one of the greatest things parents experience...even though it hurts like hell sometimes to watch them go through what life throws at them. Please keep posting. I will continue to cheer for Aly until she has a full recovery!
ReplyDeleteI would love to follow the facebook page that has been set up for her as well. Is it open to anyone? If so, what is the page called?
Tori~ I hope you know Aly can never be forgotten ...She has touched so many people and will continue to touch so many more peoples live and hearts. I think about her many times a day but I don't want to bother you all but everytime I drive by I think about stopping by but I dont want to intrude. I miss her so much and love her so much. I am so grateful for you guys letting me be part of her life she is an amazing little person and she is going to get stronger and even more amazing. One day you will be able to tell her about this trial in her life and how she brought so many people together and how she fought so hard and has won this battle and how she can over come anything in her life. She will also know the great sacrifices you and ben have made for her and will give you both a big hug and say "THANK YOU FOR EVERYTHING YOU'VE DONE FOR ME". She will know what amazing and wonderful parents she has and how much you both love her. so please dont beat yourself up... you and ben and such incredible people and Aly is just like you guys. The ogden family loves you all and we miss Aly so much .
ReplyDeleteWE ARE ALWAYS CHEERING HER ON THROUGH EVERY CHALLENGE SHE FACES!