I've received a few compliments on how well I'm handling our news. That is true to a point. I feel like I am two people. One Kyla is huddled in the corner rocking herself back and forth and the other one is telling her to shut the heck up because there is no time for that sort of behavior. She's the one in charge at the moment. I don't have time to mourn what might have been, or become paralyzed in fear over what might be. My job is to take care of Katie, to be strong enough to see her through this, to keep my family functioning like it should. My job is to make sure we have a nice vacation, because this might be the last one for a long while. As I write this, the scaredy cat in the corner says "It might be the last one with Katie." but this is why she isn't allowed to talk.
I don't know what these lesions mean, I don't know why they are there or how we are going to have to handle them. Some people (not doctors) are mentioning brain surgery, which makes the scaredy cat start climbing the walls. "The thought of someone opening up my baby's brain is too much." is what she says as she rocks herself. The doctors haven't given me projected courses of action, and now is not the time to worry about those possibilities...there is no room for needless worying. I know at some point, things will be too much and emotions will come out, but for as long as I can maintain, I have to try. I don't want anyone thinking I am cold towards what is happening, but I just can't allow myself to lower the walls right now. We are at a pivotal point and we all need to stay strong...I have a feeling there is a long road ahead of us.
Kyla, I tried to comment from the airport yesterday, but the server wouldn't let me in.
I just want to give you a hug and try to keep the "scaredy cat" from climbing the walls. We'll be here to listen to this journey of yours.
I've been following your blog as a lurker, and I'm so inclined to chime in now and... (1)tell you how amazing your coping skills are - my inner scaredy cat can claw my eyes out with one swipe!...(2)offer my best wishes and let you know your whole family is in my thoughts.... and (3)tell you how well you put your STUFF into words - you're very articulate, and I can tell that your blogging is your release. Keep releasing, and keep us informed - I know you have lots of good vibes coming over the internet!
Best regards~ Emily
I felt like I should post again, and you can choose to post this comment or to simply take what you will from it. Far be it from me to give advice.
As the sibling of an older brother who had a traumatic brain injury when he was 5, I can't comment or even begin to know how you're feeling, but I do know that you seem to be doing everything right -- you're informing yourself, you're working with doctors who you know have Katie's best interest at heart (and moving on from those that don't) and you're taking things day-by-day -- I wish my parents were internet-savvy or I would offer their contact information so you might have a empathetic ear.
No one should begrudge you the scaredy cat; and it's inevitable that she will get a word or two in edgewise now and then. And maybe that's a good thing...maybe the "mom" and the scaredy-cat need to sit down and have a good chat and figure out how to face this together.
It seems so weird to be offering anything from this weird internet-universe of ours, but if there's anything that can be done, just ask...research for when you're drained but you need to know, e-hugs, anything.
All the best,
It sounds to me like you are discovering reserves of strength you never knew you had. And no one - NO ONE - could read this blog and suppose you "cold" in any way towards your sweet little Kay-Tar. Your love for her lights up everything you write.
Waiting is hard. Having things out of your control is hard. You are so strong, but I know you'll allow youself to breathe and take some time to think about your own reactions to everything.
Seems to me that you are allowing yourself all the myriad of emotions that come with this journey, and that is just fine.
As always, my thoughts will be with you and your family as you navigate through.
I'm sorry I was AWOL for a couple of days.
Several people beat me to it, but I really wanted to add that I too, am amazed at your eloquence and calm in the face of the unknown.
You and I both know how hard it is to not have answers. Your inner scaredy cat might argue (as often as eleventy jillion times a day) that knowing is worse. I beg to differ with her, and my inner scaredy cat will tell you that her best attribute is that she lights a fire under your arse to learn as much as possible about what you DO know. It's a tricky balance with the Tough You and the Scaredy Cat, but you of all people will find that balance.
You are Katie's perfect mommy. There is no other mommy on the face of the earth that is better equipped to deal with Katie's *stuff* than you. I have complete confidence in your ability to do exactly what Katie needs, lovingly.
My advice (unsolicited, I know. Sorry) now more than ever, is to follow your gut. Always, always, always follow your gut about her. You will encounter Doctors (like the first Neuro) who aren't proactive. Sometimes that's good, and sometimes it isn't. Just know that you do have a say in choosing to follow their advice or not. But always follow your gut.
You have more people pulling for you and your little family than you will ever know. ((((Big hugs))))
Kyla - don't beat yourself up. You rock! You are such as warm and loving mother. I know I have been inspired by each and every one of your posts.
You are doing a wonderful job looking after Kaytar and your family - but please make sure you let some people look after you too. I'm sending a hug over the miles.
You guys are wonderful. Seriously..you are amazing. I've come back and read through these comments a few times in the past few days and I just wanted to tell you all thanks. :)
I understand what you are saying about letting your guard down. I imagine at some point you will be able to grieve for what "might have been" but now you need to be focused. I guess that is our job as moms - to know when to grieve and when to stay strong.
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