Tuesday, October 30, 2012

Are you someone's "yes"?

Have you ever stood by your child's bedside, watching their chest rise and fall, knowing that without the tube down her throat, it wouldn't be moving at all?
I have.
Have you listened to the beep, beep, beep of a heart monitor, fists clenched tight and on the edge of your seat, hoping it doesn't alarm again?
I have.
Or watched your child's blood being spun through an oxygenator hooked up to a network of tubes and a machine that's bigger than your own body, spinning it back to their body because their organs are unable to do it for themselves?
I have.
Have you ever jumped up every time the phone rings or a doctor walks into the room, hoping that this time, it's the news you've been waiting for?  That an organ has finally become available to save your child's life?
I have.
Or spoken with a neurologist about the brain damage that the bouts of CPR performed on your baby's tiny body have caused?
Yep, done that too.

And I am not the only one.
All over the world, people are waiting for an organ transplant to save their life.  It could be you.  It could be your siblings, your spouse, your best friend, or, like me, your children.  That's no typo there.  I meant to say children.  As in plural.  As in both of my daughters.
I have wrestled with the grief that praying for a heart for my daughter brings.  The thought that I am in some way hoping for someone's loved one to die.  I felt that way for a very long time, until a loving and wise cardiologist pointed out something very true to me.  He took me aside and said "You have to stop kicking yourself.  This is not your fault.  You are NOT wishing for someone to die.  You are simply hoping that they will make a brave and unselfish decision in their own time of grief and desperation."  Luckily, a family in South Carolina said "Yes" to organ donation, and saved my Madi's life.  A family in Texas said "Yes" to saving Sydney. 

Are YOU an organ donor? 
You can't take your organs to Heaven.  (Or wherever you feel you may be going.)
You CAN live on.
You CAN be someone's "Yes".

BE someone's YES.  Be a donor.

Click here to register to save lives.

Tuesday, October 23, 2012

Change & Friends

Recently, I was told by someone I thought was a lifelong friend that I had "changed."  That I was "judgmental" and "only wanted to be friends with heart moms."
Not only did it hurt, but it's totally not true.  In fact, my very best friend, who I spend time with every week, is not a heart mom.  What she is, though, is understanding.
Maybe I have gotten a bit more cynical after what we've been through.  It's hard not to.  When someone complains about their money status after purposely quitting their job to get on assistance, I have a hard time listening without saying something back.  (Something like "Are you INSANE?"  or "This is why people like me can't get public assistance when it's really needed-because people like you are flooding the system.")  No one can ever say that I am not honest, that's for sure.  I surely don't have time to listen to paltry excuses.  I have no patience for whining about trivial things.  Does that make me a bad friend?  I'd like to think that it just makes me a different one.
The fact that most of my friends are heart friends isn't just coincidence.  How it came to be this way is not of my design, and there's really nothing I can do about it.  The truth of the matter is that lots of people cannot handle having a friend with complex kids unless they've been in their shoes, or have an enormous and understanding heart.  They have to realize that we won't be attending their child's birthday party at Chuck E Cheese in the middle of a pertussis epidemic.  That we can't be around them when they have "just a cold" or haven't gotten caught up on vaccines.  It truly can be a matter of life and death for my kids, and no pile of tickets and plastic prizes from the arcade is more important.  I do feel bad that we can't be as present as we may have been before my kids got sick.  I don't enjoy holding my children back from fun activities and potential friendships.  But it's a necessary evil.  We live by the guidelines set for us by the transplant team, and that's the way it has to be.  Sadly, a lot of my former friends didn't have the patience for that.  I can see where they'd get frustrated.  I admit that I am a terrible phone-call-returner.  If you spent as much time as I do on the phone (mostly with insurance companies) I bet you'd loathe it too.  I also admit that it probably is hard to deal with the constant denials of invitations sent to my family.  It would probably frustrate me too.   And so my friends, one by one, have slowly faded from my life. 
I don't expect people to "understand" transplant life completely.  Even my parents don't totally get it, because they don't live it in the capacity that we do.  I just wish that more people would take the opportunity to learn, or even to ask, and truly care, about why we have to do what we do.  Or why Madi & Sydney can't do such-and-such activity.
In the end it's their choice, and I try my hardest not to be angry.  Let's be real here, though: it really does cut deep.  People you thought would walk with you your whole life gone in a flash.  Worse than that is when they tell you that you are the one that's selfish, that you have destroyed the friendship.  That really stings.  It also infuriates me to the core.
So yeah, I guess I have changed.  I have had no choice.  My life is nowhere near where I thought it would be at this stage of the game.  But it's ok.  We've made the best damn pitcher of lemonade you ever had out of our loads of lemons that life's thrown at us.  You only have to visit with the girls for a few minutes to see that they truly are miracles, and that every restriction is worth it to hear them sing, watch them play and feel their warm hugs. 
Through it all, I have learned many important lessons.  The one that I've taken away from this about friendship is: Friends are the family you choose.  My family of friends is great.  And if it took me changing to get them in my life, well then it's worth it.
Sometimes, change is good.

Wednesday, October 17, 2012

Easing the sorrow with love

This week has been a particularly rough one in my little Facebook CHD corner.
Just in the past three days, 4 heart kids (that I know of personally) have gone to be with Jesus, and it breaks my heart in a million pieces to think about what these families are going through.
Unfortunately, it's all too common in the heart world, but it doesn't make it any easier to stomach the loss of these precious children.  I feel compelled to just DO something.  Something tangible.  Something meaningful.  Something more.  And then it hit me-there is something I can do that will be meaningful to someone I happen to know and care about very much.  And you can help.  It won't take away the sorrow that fills the heart community, but it can help one family realize that there still are caring & loving people in the world, and that their son will never be forgotten.
My friend Michelle lost her son Nathan in January due to complications following his 4th open heart surgery. (Read about sweet Natey here) We live in Minnesota, which some of you know as "land of tundra", and his gravestone still is not set.  Due to the extreme climate changes, the cemetery in which Nathan is buried has very specific guidelines when it comes to headstones, which end up raising the cost significantly.  The family, who has tapped out every resource possible just trying to pay medical bills and provide for their two kids who are still with us, needs our help!  They'd like to get Nathan's headstone engraved and set before winter sets in.  I know, blog readers, that you are generous and kind people.  I know that you have love in your hearts.  I also know that most of you have not had to experience the loss of a child.  Myself included.  I cannot even imagine what that's like, nor do I want to.  So what do you say?  Can we help this family?  I think we can do it.  Please follow the secure link below to contribute what you can.  Every single dollar helps.  Please think about what you would do if you were in this situation-and I sincerely hope you never ever have to be.  This world would be a much better place if we were all a tiny bit more helpful. 
Can you skip your Starbucks for the day?  For the week?  I know I can. 
Click here to help!

Monday, October 1, 2012

Guilty pleasures-we all have em.

  Mine?  These guys.

Yep.  Duck Dynasty on A&E is, hands down, my number one guilty pleasure.  Why?  Who knows.  Maybe it's their common-man-makes-millions story.  Maybe it's the rantings of Si, the lovable uncle who seems to have, to put it kindly, "lasting effects" from Vietnam.

But probably the biggest reason I love this show is because of their family dynamic.  They may pick on each other, and drive each other crazy.  But at the end of the day, they are always there for each other.  Through thick and thin, they are family.  Period.  And nothing gets in the way of that.  They still believe in sitting down to have a family dinner, and they start that dinner every time with thanks to God for their numerous blessings.  That, my friends, is good TV.  Don't judge.