If you happen to have liver disease, or you are a parent of someone with liver disease, or maybe you're just really close or involved with someone who has liver disease, there is a great group on Facebook called "Liver". Through this group I've come in contact with a great group of people who know what we're going through (or at least partially ;).
Some of the kids in this group are younger than mine and, as far as I know, have been through a lot less. I'm not downgrading their situation one bit either--a life-threatening condition is a life-threatening condition. So when they were actually granted wishes, and I am talking more than one non-transplant, not even listed yet child, I thought, "Huh...." and applied for Roo to get a wish. When I did, I knew it was a long-shot. Ironically, I had just spoken with her GI doctor at liver clinic about her liver's prognosis at this time, and she told me that it was good. Despite that, this particular doctor has known Roo the longest, so I thought I would apply with her listed first. (In case you don't know, the doctor(s) listed are applied to, and ultimately make the decision.)
Make-A-Wish said "No."
Am I devastated? Goodness no. There are plenty of children more sick than mine who will be granted a wish this year.
Am I embarrassed? Nope. With more hospital stays under our belts than I can keep track of, I had every right to apply.
How do I really feel about this? I guess it's kind of weird, but I went into this with the attitude of "If they say yes, that's great, & if they say no, that's great too, because that means she's too healthy to have a wish granted. Either way, we're blessed." And that's truly how I feel. Despite everything, I am blessed... So Very Blessed.
If you know of a child with a life-threatening condition, and would like to nominate them for a wish, click here: www.wish.org Good luck! :-)
Sunday, November 10, 2013
Saturday, November 9, 2013
Tantrums & Friends
I remember standing there, excited, nervous, so happy, yet scared... We were going home, really going home, and I told the Surgeon I had one last question.. "Wait," I said, "one more thing... If things hadn't gone the way they did.. If there hadn't been a bile leak, how long would our stay have been?" "Oh," she said, "..about a week." and she smiled at me. For a split second I froze. If there was ever a moment for a **That's not fair!!*** tantrum, it was then, but I didn't even realize it. We were inpatient for roughly 7 weeks. This was our second stay, and if I could go back and tell the second stay me one thing... I would hug me until it hurt to breathe, and then I would tell me that everything was going to be okay.
Now my sweetie is 7 years old. It seems crazy to have a child that old. If I wanted to, I could throw a tantrum every day. Not just for my daughter, but for all the other kids who deal with diseases and disabilities.What would it accomplish though? People always want someone to blame, someone to yell at, because it makes them feel better, but honestly, I just feel like.. this is life?? Nobody ever knows how it's going to play out, and no one is exempt from it's challenges.
One thing I have learned & cried over, is you will find out who your true friends are. The ones who visited you in the hospital (or had a really good reason if they didn't), the ones who text just to see how you're doing, and the ones who put a little bit of extra effort into dragging you out of the house when they know you're going through a tough time--those are your true friends. Sometimes Family is just a Friend in disguise.
I've also realized that being honest with myself will save me and others from a lot of disappointment. For instance, my house is dirty, I want to clean it (because I should), and I have a pile of fabric waiting to be turned into something incredible.. So I tell myself that if I hurry I will get everything shiny & sparkly and still have time to start a project... and then I feel so let down when the house is just cleanish (not sparkly) when Roo gets off the bus.. & I haven't started any projects.
So, just know that I want to be that awesome modern version of Mary Poppins, but I can't. That's not me. And Me is just learning to be honest with herself & with others about herself... and that's just something that everyone is going to have to get used to.
Lots of Love,
~Cassie
Now my sweetie is 7 years old. It seems crazy to have a child that old. If I wanted to, I could throw a tantrum every day. Not just for my daughter, but for all the other kids who deal with diseases and disabilities.What would it accomplish though? People always want someone to blame, someone to yell at, because it makes them feel better, but honestly, I just feel like.. this is life?? Nobody ever knows how it's going to play out, and no one is exempt from it's challenges.
One thing I have learned & cried over, is you will find out who your true friends are. The ones who visited you in the hospital (or had a really good reason if they didn't), the ones who text just to see how you're doing, and the ones who put a little bit of extra effort into dragging you out of the house when they know you're going through a tough time--those are your true friends. Sometimes Family is just a Friend in disguise.
I've also realized that being honest with myself will save me and others from a lot of disappointment. For instance, my house is dirty, I want to clean it (because I should), and I have a pile of fabric waiting to be turned into something incredible.. So I tell myself that if I hurry I will get everything shiny & sparkly and still have time to start a project... and then I feel so let down when the house is just cleanish (not sparkly) when Roo gets off the bus.. & I haven't started any projects.
So, just know that I want to be that awesome modern version of Mary Poppins, but I can't. That's not me. And Me is just learning to be honest with herself & with others about herself... and that's just something that everyone is going to have to get used to.
Lots of Love,
~Cassie
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