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...

21 Comments:

  • Oh Jen,

    I SO know what you mean!! Oh girl ... trust me.

    I am so sorry you're going thru this pain. There is no "simple open heart surgery".

    I used to hate it to ... all while I sat in the hospital crying my eyes out 12 hours a day for 6 months ... ran out of health insurance ... and
    my friends were off sailing in their sail boats/touring Italy/going to Disneyland/
    having a grand old time with their healthy kids ...

    telling me how it was all going to be fine ... oh, don't worry ...
    God doesn't give you more than you can handle .... it'll all work out.... blah blah blah


    I am told by counselors that it's pretty typical ...

    people don't know how to act...
    they don't know what to say...

    so, try not to let it bug you..
    it sure bothered me...
    and
    apparently.. still does.

    Unless you've been thru this... no one knows or can imagine what it's like.

    Like Dan from 0ddness once told me...

    the worst kind of illness/defect there is...

    is the one YOUR child has.

    By Blogger Terri@SteelMagnolia, at Fri Sep 14, 12:27:00 AM  

  • Unless someone has been in the shoes you are now wearing, they will never "get it". I've had people telling me they know how I feel with Bethanys surgeries because either their friends grandad had "the exact same thing" or they've had surgery on a toenail or something stupid.

    You're a member of a very exclusive club, but not one of the members in that club want to be there. But you know what, at no point do any of their rants seem like whining. You have every right to be worried and scared because your daughter is having something done.

    When Bethy was first diagnosed with her issues, we lost several friends who just didn't understand, and it was like we developed some kind of disease that they didn't want. When we lost Bethy, we lost even more friends because... well, I still have no idea why.

    But we look at it like "they obviously weren't that good a friend" at the end of the day because they didn't know what to do or say around us.

    Terri is completely right with that last line on her comment. Don't look at other parents and feel bad, don't compare and don't worry what other parents might think. I've known parents to apologise to me for being so upset that they are dealing with a hole in the heart and what-have-you.

    Don't apologise - you're dealing with all this, the last thing you need to worry about is upsetting peoples delicate sensibilities.

    Rant, rave, bitch, moan - it's good for the soul ;) And for all the friends that don't get it, understand, comprehend and what have you - for every one of them, there are ten of us that DO get it.

    Hang in there darlin - you know where I am if you want to rant.

    By Blogger Dan, at Fri Sep 14, 01:50:00 AM  

  • I think a lot of people simply don't realise just how serious heart surgery can be. Until one has someone close to him or her go through such surgery, he or she really doesn't quite understand what you're going through. Regardless, it's pretty annoying.

    By Blogger Mercurie, at Fri Sep 14, 07:30:00 AM  

  • I want to elaborate on what my good ole buddy Dan has said.

    When I was mentioning what a grief counselor told us...

    she said that during times of
    divorce, serious illness and death ...
    people don't know what to do...

    it makes them uncomfortable...

    many just walk away ... put their head in the sand... they don't want to deal with it ...

    they don't mean to hurt you ...

    it's just hard for them to deal with... and in a way.. it makes them afraid it will happen to them, too.

    it's just a weird thing.

    I actually was happy to hear that from the counselor ... b/c until then .. I took it very personal.

    By Blogger Terri@SteelMagnolia, at Fri Sep 14, 09:19:00 AM  

  • I'm glad you have this blog where you can rant about your feelings. Hopefully, it helps.

    By Blogger Kurt, at Fri Sep 14, 09:19:00 AM  

  • Terri said it all. Take care and as always, I'm pulling for you.

    By Blogger Merle Sneed, at Fri Sep 14, 10:36:00 AM  

  • I have no idea what you and your family are going through and I avoid metioning anything than you are in my thoughts. I have no idea how to comfort you and make it okay for you. But I do hope things are fine. I want everything to be okay for yoou and yours. If it is not I will cry with you and get angry with you.

    You will be in my thoughts and in my prayers on October 2nd. It is on my calendar and I wish I could wrap you and your family up in warm gooeyiness that made it all go away but I can't.

    By Blogger Deb, at Fri Sep 14, 10:49:00 AM  

  • We've been praying for you guys at night. My daughter can't ever get Lindley's name right, but she talks about the little girl "with the heart thing".
    We live pretty close to Fort Worth and I almost volunteered myself when you first started posting about this but I wasn't sure if it would be interfering and weird since I'm not anybody you know in real life.
    But really, feel free to impose. I have a home daycare- I'll take your other kids for the day if you need- or whatever else you want.

    By Blogger Kelli in the Mirror, at Fri Sep 14, 02:06:00 PM  

  • girl...i am so sorry. i don't know what else to say. i will be happy to donate blood for lindley. let me know what else i can do to help. i am praying for you guys constantly!

    By Blogger Ladybug, at Fri Sep 14, 04:18:00 PM  

  • I don't know what to say that you haven't heard already. Instead I'll keep you all in my prayers. {{hugs}}

    By Blogger *~*Cece*~*, at Fri Sep 14, 05:15:00 PM  

  • Jennifer,
    These guys that have been 'through it' have said it all. Those of us who haven't DON'T know what to say, or how to say what we do say! Yes, in a weird way, it's as though we ARE afraid that bad things will befall us. I've learned a lot from reading your blog and will certainly be more careful at how I respond to people's needs.

    I hope you got the e-mail I sent this morning. I prayed over every word I wrote hoping that it wouldn't come across as being flippant. I know I am a stranger to you but if you need me for anything, at any time...call.

    By Blogger In_spired, at Fri Sep 14, 05:16:00 PM  

  • Your welcome. Good luck and our thoughts and prayers are with you.

    By Blogger carmachu, at Fri Sep 14, 05:52:00 PM  

  • Jen, we won't delete you from the blogroll. We'll keep praying for you and Lindley. We'll come back and see what is going on. We hope and pray for the best.

    By Blogger David, at Fri Sep 14, 11:47:00 PM  

  • Jenny

    You have the right to feel and to be however you are and feel during this. she is your baby.

    We are all here for you.

    By Blogger flutter, at Sat Sep 15, 01:05:00 AM  

  • Just know we are listening even though we can never fully appreciate the fear and pain you and your family must be going through. The unknown and even the known come with no guarentees and therein lies the fear. Everyone's best efforts can only go so far it seems and then we fall back on our faith where it probably always should have been right from the beginning. This is a traumatic event for you and the family. I know I can't be there, but I can be here and will be!

    By Blogger LeRoy Dissing, at Sat Sep 15, 12:35:00 PM  

  • all I can say right now is you need hug(((((((hug)))))) I dont have words of wisdom, Or anything smart to say, but I wish I did. I have been praying for you and your family and your always in my thoughts.

    By Blogger Marcia, at Sat Sep 15, 08:48:00 PM  

  • I hope the surgery goes well and that Lin has a full recovery.

    By Blogger Mariana, at Sun Sep 16, 01:29:00 AM  

  • You know what? You are absolutely right!! It is our jobs as parents to look truth and fear in the face and stay awake.. NOT try and find the "silver lining" in all of this challenge.

    You are an inspiration...

    By Blogger Redsy (formerly CrankMama), at Sun Sep 16, 01:46:00 PM  

  • I've only been reading your blog for a few weeks, but I'm always checking in to see what's new with Lindley -- I'm so sorry that you're going thru this.
    I know there is nothing really to say to be comforting right now...it would absolutely be terrifying to have your child go in for open heart surgery -- it's a huge deal.
    I'll be praying for her and you...

    By Blogger jayfersgirl, at Mon Sep 17, 01:17:00 PM  

  • Vent away...
    I wish I could give you some of my "happy" pills;)

    By Blogger EE, at Thu Sep 27, 10:01:00 PM  

  • I confess I have not followed the comments on this issue. I'm sorry that people are being the way people are...Honestly, I was talking to my husband about Lin and some other things I've been worried about. I told him that if anything ever happeend to one of our children, he would have to understand that I would not "be here" for a while. We are mothers. That's what it means to be a mother. We are physically united to our children in the sense that we see them as part of us still...every day until they leave us, and sometimes even after that. There is no making light or getting over something like this. You can't. The only thing you can do is try to walk through it, holding onto your loved ones if at all possible.

    Jen, I can't begin to know the pain you are feeling. I'm here for you. You are in my thoughts... so is litle Lin. Your family is beautiful..Thank you so much for feeding us pictures and letting us in on your life. IT has been a blessing... a joy. We love you. Okay? We love you. We will pray.

    By Blogger Merry Mama, at Fri Sep 28, 12:51:00 AM  

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