I will admit, I always think I need to be perfect at handling emotion. Not sure where I got that from but it is how I am and something I struggle with. I feel like if I let my emotions get to me then I am not strong enough to handle everything. I feel like if I let it all out I just sound like I'm complaining and I don't want to come off as whining. I also worry that people would think I'm looking for attention, actually that has worried me enough at times that I have almost stopped blogging but then I get reminded that there are reasons I blog and it's not to do with attention. I LOVE my life. I love my girls, my hubby, my family and friends. But I guess I have to admit that sometimes emotions are hard. Today I am sitting between wanting to ball and scream, and I need to be honest with myself and let myself have these emotions. Do I want to sulk... no, that is not productive, but its also not productive to not let myself feel.
So, what am I stressing about?
The girls...
Jilli's last dose of the steroid was on Saturday and she is still needing nebs every 4 hours. Now the gunk coming out of her nose is turning yellow. I called the ped's office about that today and they said if she gets sicker then they will put her on antibiotics... while I don't like her being on antibiotics, her pulse ox in therapy dropped down to 82! This child is shaking from all the steroids. She has been getting nebs for over a week now. She did the walk on Saturday but spent in reclined in her stroller and slept part of the time. Before the walk started she was out of her stroller a little it but also spent a lot of time resting. This is not normal even for her... but she is also not at the point where she needs to be in the hospital... she is in this stupid gray zone.
I also have not heard anything back from GI since last Tuesday. I just left another voice mail today. I sent a message on Friday, Lydia's home nurse called them on Thursday... apparently they are not returning phone calls. They called last Tuesday and said someone would call me back but that has not happened yet.
Jilli has her PT goal eval today... lets just say she bombed. Between her injuring her ankles, her overall tone getting weaker, and the sickness she is now battling from surgery, she has gone backwards; to the point where there was talk about taking one of her goals off because maybe it is just to far away to be a practical goal. We still have a few more weeks until we have her appointment for braces for her legs.
Tomorrow Lydia has an appointment with the airo-digestive clinic where we will see pulmonology, ENT and speech. I am really hopeful that it is a productive appointment. They will decide tomorrow if Lydia is having surgery on the 27th to scope her throat and lungs. I know this is a surgery we need to do at somepoint so I would rather just get it done, but it means going into the OR for a second time this month.
There is also some extended family health stuff that has me stressed.
We got a letter in the mail the other day that insurance is not paying for Jillian's neuro-psych eval that happened LAST FALL!!! Apparently the insurance company sent Aurora questions about why it needed to be done on a 2 1/2 year old and Aurora waited to respond until JULY! The contract our insurance company has with Aurora states that they have 180 days to respond to questions, not over 6 months, so insurance said they are not paying (and rightfully so) but I have a feeling this is now going to be a mess I have to fix on top of whatever mess comes from the Botox that Children's did not get insurance approval for before they did it. I just love dealing with insurance messes... especially ones where its not the insurance companies fault. Maybe by some chance both of these health care companies will see that these were their errors but I'm dreaming big.
We will get through it, we ALWAYS do. I am not sure why today is hitting me so hard. Maybe its the lack of sleep from giving a child neb treatments in the middle of the night mixed with a baby who does not sleep though the night most nights, or the fact that Jilli has not felt good in 10 days so she does what most kids do when they don't feel good and whines til you want to pull your hair out (I don't blame her, she doesn't feel great, but I'm human and whining... oh whining) or the fact that I don't often admit or deal with the impact of all of the health tests on me. Jilli handles most things like a champ... this is the only life she has ever known, and while some things are hard for her she is still little and does not remember a lot of it... me on the other hand. Putting her in the special chair for a chest x-ray last week was ripping the band aid that holds in the emotions of all of the emotional experiences of that stupid chair. Shoving a ph probe down here nose, multiple times where she was too sick to support herself, times where she had turned blue before that chair. For a stupid little chair that helps get good chest x rays, I sure hate it and it invokes emotions that I try to hide. I try to pretend this all does not rock me emotionally but it does. I guess I'd be a robot if it didn't.
Yesterday I got the privilege of listening to an awesome sermon about dumb things Christians say. So many of them have been said to us about the girls, to the point sometimes I avoid conversation about the girls cause I can't handle hearing one more cliché but I get that most people don't know what to say. But I found the sermon encouraging as he talked about John 9:1-3, about using health stuff for the glory of God. I have seen over and over and over again how God is in this, how He is using this for His good, and in that I find encouragement.
I also find encouragement in amazing people. Thank you to the amazing friend who sent me a note of encouragement today. It's what my heart needed! Thank you to my hubby who let me go to target by myself tonight. It was running errands but there is something therapeutic about target and I just needed some time to process. Thank you to a couple of friends who stopped out on Friday with food. Thank you to the people who rally around us. You are the hands and feet of Jesus. Thank you. Thank you for listening when I whine and have compassion on us. Thank you!
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