Thursday, September 20, 2007

Attitude is EVERYTHING, so where are my happy pills?

I received an email today that I'll post below. I've been feeling pretty motivated and energized since Saturday. Yesterday I hit a brick wall, but today I'm better. Still feeling pretty weepy, but that will probably last until November or until I can score a wicked good prescription to give me that excellent feeling called "numbness." Can I do it gracefully without pills? Of course I can! Do I want to try? No, I don't!

People who think you should feel what you're feeling while you're feeling it are usually miserable people and are missing out on the joy of going through hell while being able to remain calm and functional for their loved ones. I've been feeling the worry and anxiety for quite a while now and I've got it down. It's been memorized. I'm ready for the pills that can make me chillax and take it all in stride. The day of surgery I expect I'll be bombarded with well-meaning people full of stupid advice about how I should relax and not worry. I plan on beating them to the punch if at all possible and swallowing a tiny portion of a pill that will prevent me from slashing their chests open while cheerfully telling them not to worry. I used to have access (cough* cough*) to a little pill that would mellow me out without making me a zombie. I'm going for it. Don't judge me. It's not in the bag yet, but my people are working on it. Thanks to the mental health system in my town, it's a five month wait to get into a psychiatrist. I'm having to find alternative methods.

Until then, here's a great little story of a woman who never existed . But it's nice to receive these things at a time like this so I can beat my head on the wall and wonder why I can't have a cheerful and overwhelmingly positive attitude about it all.

Attitude

There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head. Well," she said, "I think I'll braid my hair today?" So she did and she had a wonderful day. Xanex

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head. "H-M-M," she said, "I think I'll part my hair down the middle today?" So she did and she had a grand day. marijuana

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. "Well," she said, "today I'm going to wear my hair in a pony tail." So she did and she had a fun, fun day. crack

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head. "YEA!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything. Be kinder than necessary, for everyone you meet is fighting some kind of battle. Live simply, Love generously, Care deeply, Speak kindly....... Leave the rest to God. Life isn't about waiting for the storm to pass... It's about learning to dance in the rain .

....................................................................................

The story doesn't mention that she thought those things either before or after crying buckets. I guess no one will ever write little emails about me to forward since I don't have a happy-go-lucky attitude, so maybe I'll make one up myself:

One day a woman took her daughter to the doctor and found out she had a congenital heart defect. She said, "That's okay! We always knew she danced to a different beat!" HA HA!

Time passed and the woman found out her 3 year old daughter would need open heart surgery. She sighed but knew it would be a great time traveling to the metroplex area. Her children would get to see a hospital!

Finally, the surgery was over on October 2. She giggled as she looked at the long incision down her daughter's chest. "Guess who's gonna be Frankenstein for Halloween this year!"

Everybody loved her because she had such a merry attitude. Emails were forwarded from office to office. Attitude is everything! Be happy!

The end.

Sunday, September 16, 2007

Have Faith and Quit Your Whining!

I almost took down that last post because it was so negative in parts. Plus I feared that readers were thinking I was referring to their previous comments as being flippant or unhelpful. Not at all! You guys have kept me sane! Not one single person has said anything I would consider insensitive.

The more I've thought about it and the more I've read, I'm finally realizing I'm being too hard on people who love us and have no idea how to comfort us or help us at this time. Most people don't have a manual handy that explains how to comfort loved ones in the midst of various types of turmoil.

On the other hand, I'm still struggling with a certain family member--the one who told us not to give the surgery a second thought.

We were barely awake on Saturday morning--sitting in a dark living room in our pajamas--when I noticed someone was staring in the small window in our front door. I was startled that anyone would be watching us, and even more shocked that it was family who live in a neighboring state. We all know how much I despise surprise visits, but this one ended up being a good one despite the surprise aspect. Ironman has asked this relative not to be at the hospital on the day of surgery because the relative tends to open his mouth and asinine things fly out.

Who am I trying to protect? Okay, my father-in-law visited. His heart is almost always in the right place. I have no doubt he adores his children and wants desperately to protect them from their own stupidity. Never in my life have I seen a person fail so miserably while trying so hard to convince others he's superior in every way. He does have many talents, but imparting wisdom is just not one of them. He has a habit of stating the obvious and then looking at me as if he just revealed a secret of the universe.

Today's lesson was empathy and sympathy. Ironically he did the poorest job of demonstrating either with the conversation that followed, so I don't know why he chose to begin with a lecture of the semantics of each word. Because I knew what was coming, I interjected that it has been VERY frustrating (hint, hint) to have people tell us how we should feel about what's taking place in our lives when they've never been in our shoes.

I was ignored, and the rest of the lecture continued including examples of a friend's daughter who always has a smile on her face and a song in her heart even though her child has leukemia and has spent the past year and a half in the hospital.

Translation: Quit moping around because your child is having open heart surgery. If a mother of a dying child can be so optimistic and upbeat, so can you.

My thought: Good for her. Seriously. If she hasn't had a dark period in a year and a half, more power to her. Personally I think:

A. She has a really good doctor who has given her excellent medication.
B. She is seriously good at putting on a facade of peace and tranquility when others are watching.
C. She has lost touch with reality in order to cope with what's happening.
D. She's come to terms with it and has given it over completely to God who has given her peace that passes understanding.

I hope for her sake that it's D.

D has not happened for us yet. I'm still praying that it will. To some extent, it has. Before I go on with my rant, I'll tell you what the rest of the lecture consisted of...

My father-in-law and mother-in-law tag teamed us on how we simply can not allow ourselves to feel fear or worry because there's no point in it. They went on about how we have to rely on our faith to see us through.

How many times have I thought that or said that in my life? I totally believe it. But I feel like writing a book for Christians who lay an unintentional guilt trip on their brother and sisters in Christ in an innocent attempt to keep them focused on the almighty God. If you would just keep the faith...

Ooooh, so it's my lack of faith that's causing all of this? So it's my fault? Great.

I honestly don't think I would be having the trouble with depression that I'm experiencing now if I hadn't gone along with what my fellow Christians who were promoting the faith in God and expect a miracle mentality. I was even given a book for Christmas (that I only read half of to tell you the truth) that tells Christians they already have the healing from God. You just have to know how to pray about it. To be fair, I should have finished the book before ragging on it, but I was so frustrated by the thought that God would only answer my prayers if I knew the tricks of how to go about it that I tossed it aside. I don't believe God plays games.

Don't hear me wrong. I believe God can and still does perform miracles for some people some of the time. But the power of positive thinking and faith that the next echocardiogram would show she was healed did not work in our case. So each time we got more bad news, I sunk a little lower. Not only was I crushed because I wasn't prepared to hear bad news since I was only focused on what God could do for her, but I also blamed myself for not having enough faith, not being a good enough person, and not praying the right prayers.

I think God would like to tell us sometimes, "YOU'RE TOTALLY MISSING THE POINT!" There have been many times in my life that I felt like God didn't answer prayers, but time showed me he did answer them in his time in his way. I don't doubt this will be the same way. I feel like God has given us insurance and competent doctors among many other things like supportive friends, strangers who are offering to help us in any way, and the list goes on.

It's not God I'm angry with. It's the well-meaning Christians that are driving me crazy. God never said we can't be afraid. We're humans. "I am weak, but he is strong..." And telling me I've got to have faith just implies that I'm not showing enough faith. The last thing I need right now is people making me feel guilty for not being stronger or happier or more positive. I'm scared! I AM praying about it! I AM trying!

Despite all the faith in the world, bad things happen to good people. That's why there's a saying about it. Humans make errors. I can have all the faith in the world that God will protect Lindley, but nothing can change the free will a surgeon has to foul up. It happens. It just does. Saying it won't happen and being a positive thinker isn't going to change how capable the doctors are or how Lindley reacts to the anesthesia or how her body responds to the heart and lung machine. There's a million tiny things that could go wrong. And while I'm HOPING AND PRAYING everything will go smoothly, and I don't want anybody else dwelling on the fact that the surgery may not go as planned, I still have to think about those things. If something goes wrong, I'll blame myself. Not Ironman. Even though we both feel the surgery is our only option at this point, I'm turning over our baby and praying that nothing goes wrong.

"Fingers crossed! Hope you weren't out drinking last night! You look distracted and maybe even a little sleepy, but here's my baby! See ya in 6 hours! "

"Oh, Jennifer! You just have to have faith! It's just Satan putting those fears in your head. Don't give the surgery a second thought. You can't worry about it."

I wish I had the power to say to them, "You're fired." "Your show has been cancelled." "You're cooked."

I don't know. How do you balance the faith it takes to believe in miracles with the reality that God may have another route for you to take? I just don't have it in me to go into yet another situation believing whole heartedly that things will be wonderful and come crashing down if they don't. I'd rather go into it realistically and be emotionally prepared (as much as one can be) for set backs. I wasn't always cynical.

I think my rant is over because Bub is awake. I feel a little better venting once again.

Thursday, September 13, 2007

Venting

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...

Monday, September 10, 2007

And Now The Blogging End Is Near...

Wow!

I can't believe it took almost 48 hours to dismantle this blog! I thought it would only take a few hours. At the same time, I can't believe it only took a couple of days to wipe out 21 months of writing, 900 posts, and a lot of memories. BUT I did save it to my computer....the hard way and the easy way. I also printed it on paper and can't believe I needed over a thousand sheets to complete the task.

I don't know how I feel right now. A little sad and a little relieved. If you're wondering if you missed something, you didn't. I did it without warning because I didn't want to be talked out of it. This blog has brought me mostly joy, but it's also put me under a lot of scrutiny. I've grown more and more envious of my fellow bloggers who have recently started over from scratch and become anonymous.

At this time, I'm not throwing in the towel on this blog so that I can start up another. For those of you who have been around since the beginning, you've probably noticed this blog has been on life support for about the past 8 months. I've used every stalling tactic from blog rehab to gross pictures in attempt to keep my blog going until I felt like writing again. And then most of my writing became updates about surgery and insurance. I've been feeling like I was letting you guys down for a long time now.

Although it would have been easier to just wipe out this blog with the push of one button, I wanted to keep it up so that I can update all of you precious people following Lindley's story. And part of me hopes I can find my love for writing again so that I can use this cool template! I still love this thing!

Also, I had written a post earlier about saving around 400 of your emails and comments so that I could respond to you and let you know how much they meant to me or made me chuckle. I accidentally deleted it with all the other posts. It was basically saying that life feels so overwhelming right now, I'm going to have to take that off my list of things to do and just focus on getting through the next couple of months with Miss Lin. But please know that I have always really loved your comments on my blog or replies from your blog.

I've pretty much shut down shop here, but it's not completely over yet. I might have some things to share before Lin's surgery, and I'll definitely tell you how she's doing after the surgery on October 2. My email is blessedmomx3@hotmail.com. Like I said, I may or may not have the time to reply. We'll see how things go. Much love my bloggy friends!

(Insert Frank Sinatra singing, "I Did It My Way" here. The actual video was too cheesy to post even for me. ) :D