I warned you in the last paragraph of my previous post that I might have some things to say before Lin's surgery, and I do. I figure nobody will ever be back to read this and that I've probably already been deleted from most blog rolls and RSS
feeds or whatever those things are, so here goes.AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAACK
That's me screaming at the top of my lungs.
I'm screaming at all the people who are minimizing what's happening to Lindley
and our family.
I try to remind myself they're doing it to make us feel better, but it doesn't make us feel better. It makes us feel like hardly anyone is grasping what's going to take place.
Last night I was told, "Don't even give it a second thought. She'll go in. She'll come out and be a healthy little girl, and you'll never have to think of it again."
On the surface, I see that's just positive thinking. Nothing wrong with that. I don't want to think that there could be complications. I don't want to consider all of the horrible risks. And I don't want to prepare myself for reality which is this will follow us for a very long time. She'll be going to doctors to be monitored for at least her childhood and teen years. This is not necessarily the "fix" we once expected it to be. There are so many variables of how this could turn out that it's mind boggling. Everything from "She'll be worse" to "She'll be the same" to She'll be only slightly improved" to "She's as good as new." I also realize it's the surgeon's job to prepare us for anything.
So right now, it IS my job to give all of this a second thought. And a thousandth thought. It IS my job to be prepared for all possibilities.
I keep getting all these comments about people saying they didn't realize the seriousness of the situation. What the hell!?! Have we NOT been saying since the first visit to the cardiologist that she'd be needing open heart surgery??? But at least those people are a relief because they finally get that it's a major, major, major deal. It's the people who act like she's getting a wisdom tooth pulled that are frustrating me.
This is without a doubt the worst thing I've ever been through. I'd rather be having open heart surgery myself every year for the rest of my life than have my baby go through it once. I can't STAND this! October 2nd
is going to be the worst day of my life until I hear that surgery went better than ever expected and she's doing beautifully. If I hear that, October 2nd
will be the worst and one of the best days of my entire life.
I'm underwhelmed by the support of some people, but the support we've been offered from complete strangers humbles me. And most of those "strangers" have been cyber
friends. I can't thank you enough!
What gets me most is what my life long friend Randa is doing. She is more than a best friend and more than a sister. She lives 3 1/2 hours away in another state. She has two little boys in school, a 3 year old at home, and she cares for her sister's baby. She's asked for her husband to take the day off of work to fill in for her as mommy that has kids to get to and from school, etc. She's had to ask her sister to find someone else to care for her baby that day, and she's driving to Fort Worth to be by my side. She's there as a shoulder to cry on, comic relief, and someone who will take care of my other two children so my parents can be with us while we wait all day for Lin to come out of surgery.
There are no words to describe that kind of a friend. And I don't have enough words to express my gratitude. I never had to ask her to be there for me. I wanted to soooooo
badly, but I didn't see it as feasible. Randa, thank you from the bottom of my heart for knowing me well enough that I didn't have to tell you I needed and wanted you there.
Then another friend popped up and offered her support--Headless Chicken aka Adrienne--who has offered to be there in any way she's needed. She's at least an hour away and also has 3 children she'll be juggling to make it work. Never in a million years would I have expected her to find a way to be there that day. I'm completely stunned by her generosity. The younger your babies are, the harder it is to be there for anyone else, and her youngest is only one. I don't even know how she's going to manage it all, but I'm eternally grateful.
And my other friend Christel that I've known over half my life just came to town to visit and scheduled a much needed girls only lunch. Thank you, Christel! She has TWIN one year old daughters, a husband who is frequently traveling for work, and she lives many hours away, but she was eager to help us in any way she could. She even offered to cook some meals for us to put in the freezer and use when we got Lindley
home. Her biggest gift to me was her time and willingness to listen to me talk about my fears that day. She simply listened.
Besides being incredibly wonderful human beings, all of these friends have something in common. They get it. They don't tell me they know how I feel since they've never been in my shoes, but I still get the sense that they feel my pain. That's all I need right now. I need the loved ones in our lives to recognize this is terrifying. I don't need people to make light of the situation and tell me to look at the bright side right now. I need to be in the reality of the moment. And that may really rub some people the wrong way since it seems negative and lacking of faith in God. I've been that person who wants people to be optimistic and think positively, but now I will think twice before I try to ease some one's anxiety by pointing out the best case scenario as if it's an outcome I can promise. It's my opinion that I'm being strong, and I'm being real. And this IS a big deal.
Other than cancer treatments and organ transplants, I don't think there's not a lot of medical procedures out there that compare to the seriousness of open heart surgery. It's not ear tubes, or an appendix removal, or having tonsils taken out. It's heart and lungs stopped for hours on a table while people you don't know open your child's chest and stick their hands inside.
If you ever have a friend or a loved one who has some major medical ordeal they're about to go through, this would be my advice:
If it's at all possible, be there with them. Don't make them ask you, just do it. They won't want to burden you. They won't want you to lose a day's wages. They won't want to inconvenience you, so they won't ask you. What made me tear up about Randa was that she told me she was coming and told me there would be no discussion or argument. I still tried to argue with her, but she would have none of it. That released me from so much guilt of inconveniencing her to the huge degree that I am.
I think it's been assumed that because my parents would be taking care of my children in Fort Worth that child care was covered. I will never be able to thank my friends enough who had the
foresight to consider I might need my parents by my side that day. Because of their willingness to step into a role that most would consider taken care of and not give a second thought to, they've freed up my parents. You can imagine how grateful my parents are to be able to have that need taken care of. It's a scary day for them, too.
I know we'll get through this. I'm grateful that surgery is an option for us. I'm more than grateful that Lindley's
condition is not more serious because I've met so many heart parents who would give their right arm or more to be in our shoes. When I think of them, I feel guilty for ranting that we've got a serious situation on our hands. But mostly I'm overwhelmed. I think I'd like to sleep for a month after Lindley
is home and running around again.
This has been a trying year for all of us. A year of wait and see on everything from insurance to her condition to the actual surgery date. The disappointment today is that we can't donate blood for her. The blood center here doesn't transport blood all the way to Fort Worth, and they don't do credits either. We'd have to donate at Carter Blood Bank in Fort Worth for it to be credited to her. Ironman
had planned on donating his own blood directly to her if he was a match, but he was crushed today when he found out he can't donate due to medications he's on. We had a lot of people at Ironman's
work that were wanting to donate, but no luck since the blood can't be transported or credited. Last I heard, my blood disease means I can't donate either, but I'm double checking that with my hematologist. If nothing else, my parents will donate the day before surgery in Fort Worth, and we'll be given credit. They don't expect to need more than 2-3 units of blood anyway, so it won't be a big expense to use the blood bank.
That's all for now. Thanks for letting me get that off my chest. And thanks so much for all of your sweet good-bye comments. I promise to keep you guys posted on Lin's surgery, and who knows...I may just be in the mood to blog again once all this is over. Stay tuned...