Misconceptions

Since we started this whole heart journey people have said certain things to us that bothered me.  They didn't necessarily offend but did bother.  So, I wanted to take some time to address these misconceptions that some may have about our situation.

The most common misconception I find is people asking "How do they fix her heart?"  They don't.  That's not how it works.  There just isn't the technology to "fix" her heart.  For now, these amazing surgeons jimmy-rig these hearts to work as best they can.  And even then, it's not a guarantee.  These kids can go through all three surgeries and still end up on the transplant list or with a pace maker or need some sort of extra help.  Someone was brilliant enough to come up with these surgeries and someday someone will be brilliant enough to figure out how to truly fix these hearts but until then we we just have to deal with a jimmy-rigged heart and the possibility of transplant.

And transplant is what got me thinking about these things in the first place.  A sweet little girl, Mia, is currently on ECMO after being sick and finding out her body was rejecting her heart transplant.  When we were first diagnosed a had several people say to me "Well, can't they just do a heart transplant?"  There is no such thing as JUST a heart transplant.  Return to Me, while a cute movie, is extremely misleading.  It doesn't show her waiting for her heart, her medicine cabinet filled with meds, the scare every time she gets sick, and the list goes on and on.  All it shows is her getting her heart, worrying about a scar she should be proud of, and falling in love.  I don't know first hand what transplant means but I have watched and am watching friends go through hell waiting for a heart and watching their child go through rejection.  I love how some of the heart mom's said "When you get a heart transplant you're just exchanging one set of worries for another.  

Now, don't get me wrong.  There are success stories with transplant too.  I just want to clarify that transplant is not a road we currently want to take.

This brings me to the next misconception.  Olivia won't HAVE to have a heart transplant.  Chances are good that, yes, she will.  But it is not a guarantee.  Another heart mom phrased it perfectly when she said, "We'll cross that bridge when we no longer feel like jumping off of it."  (Thanks Hilary.  My new favorite saying.)  We certainly don't want to go down that road and we will continue to pray and hope that that's not asked of us.  And there are those who haven't had to.  When diagnosed I reached out to a friend who's little boy was born with HLHS and she directed me to a blog featuring a woman born in 1991 living with HLHS.  Meaning she was still living with it.  Not living with a heart transplant.

Again, a prefect segway to my next point.  This same woman, Meg, is LIVING with her HLHS.  She's not handicapped.  She's not impaired.  She's a college student, on the gymnastics team, and an avid skier.  Olivia may be having a rough start to life.  She may be a little slower than regular babies developing physically.  But this doesn't mean she will always be slow.  You really can't blame her for being a little behind.  Tummy time is miserable for her.  Wouldn't you hate it too if your chest had been sliced open?  She spends a lot of time in the hospital which isn't the best place for reaching those milestones.  And mommy holds her...A LOT.  I may be hindering her some by not forcing her to do tummy time and spend time exploring the floor but you go through what I've gone through this year and you'd never put her down either.  That, and she's not slower than average yet.  And her size is certainly working in her favor to keep her from ever being too far behind.

Sticking with the subject of her size (I'm rockin' the segways today!)  One thing I have found people forget is, my baby has a heart defect.  I know!  Crazy huh!  Ok, I'm sure they don't actually forget since she's got the feeding tube and oxygen but I do believe that they forget how fragile she is.  She certainly doesn't look it.  She's a chub!  She's heavier than babies twice her age!  But, she still has a heart defect. I've had people hint that we're using her as an excuse to get out of things.  We didn't go to the Brigham City Temple dedication/open house because we didn't want to bring any germs home from the large crowds.  We go to family things and church in shifts because we won't take Olivia in the midst of the germs.  We're not USING her as an excuse to go as half a family or not at all.  Believe me, I'm super bummed that I'm not taking Olivia to any Halloween parties to show off her costume.  I'm bummed that I won't get to go to temple square this Christmas.  I'm bummed that we only get to go places as half a family.  And I'm bummed that I'm not going to be leaving the house ALL winter.  I'm bummed but I'd be way more bummed if Olivia got sick.  In case those "excuse" people forgot, our baby has a heart defect.  She looks perfectly normal.  But she's not.  We are asking her heart to work SO hard to keep her alive.  I'm not going to ask her heart to work even harder while it fights a cold, the flu, or any of those other nasty bugs floating around at the family Christmas party.  So, "excuse" people, I'm sorry if you think we're bailing on events because we don't want to go.  I'm sorry if you think that just because my child LOOKS normal, she is.  She's actually not.  

Now, here's one misconception that REALLY gets my goat.  I recently cut off ties with a "friend" that I had gone to school with back in the day.  She finally made known her opinion on our decision to keep Miss Liv with us instead of letting her go.  Her opinion was that we should've let Olivia go because it should be about quality of life rather than quantity.  First off, she doesn't have kids so really has NO room to be spouting off her opinion on something she can't possibly comprehend.  And there's about a million other arguments I can make to debunk her opinion but that's not the point I'm trying to make.  What I want to clarify is for those who wonder about the quality of life Olivia will have.  Normal.  Or pretty close to.  Us opting to go the surgery route isn't us being selfish and condemning her to a lifetime of pain and suffering.  Yes, there is that chance.  But isn't there that chance with any child?  Between illness and accidents there is always a chance that any child, healthy or not, will at some point have a less than stellar quality of life.  Andrew and I opted for this route because it's what we felt was right.  Olivia has a very good chance of living life without anyone even knowing of her tough beginning.  The blog I mentioned proves that she can have a normal life.  She may be cursed with her mothers lack of coordination so I can't guarantee that she'll be a gymnast or skier but she has the same chances of being those, a musician, artist, ballerina, doctor etc as any other child.  I certainly am not going to tell her she can't do certain things.  I hope that I can encourage her to do anything and everything that she sets her mind to.  I want her quality of life to be normal if not excellent.  If I didn't think that was possible and that she would always be in pain and misery then I may have opted to let her go.  But every day I spend with her I know we made the right decision.  Olivia was meant to come to our family.  She was meant to live.  And we will cherish each moment we have her.  Whether it's a few months, years, or decades.  I'm rootin' for decades.  More specifically, I'm rootin' on her outliving us, which we were told was unlikely.

And the last misconception I would like to address is on a more personal level.  For those of you who think I'm strong, oh my.  You don't know how wrong you are.  Now, don't get me wrong.  I don't mean this to be a "Woe is me, pity me, I'm in deep depression" type thing.  I have been told so many times by so many people that I'm so strong for doing this.  Well, I don't really have a choice do I?  I certainly don't feel strong.  During the day I'm far to busy to worry about my strength but at night, when I finally sit down and relax I realize just how weak I am.  And, as crazy as it sounds, I love those moments.  Each one of those moments is an affirmation of just how much I am loved.  I know how weak I am, yet I made it through another day.  Even when the earthly help I needed just wasn't there the spiritual help ALWAYS is.  I think people are somewhat scared of us right now for various reasons. They don't know what they could possibly do or say to help, they are worried that Olivia will have an episode while they're around, they're worried they'll step on her feeding tube and pull it out?  I really don't know why but lately people seem to be keeping their distance.  Of course, it could be as simple as they don't want to bring germs into our home (thanks if that's the case) but some days I feel so incredibly alone.  But the moment I sit down to relax and really think about my day I can see that every step of the way my Savior was with me.  That little extra push I got to finish making Ella's birthday present, do the dishes, or even wash my hair.  That burst of energy when Olivia wouldn't nap.  That hug from Ella.  Andrew folding laundry without being asked (never happened until Olivia was born.)  Every little miracle throughout my day shows just how alone I'm not.  The strength others see is not my own.  I would be incredibly ungrateful if I didn't acknowledge where that strength came from.  Growing up, I was taught that God wouldn't give you any trial you weren't strong enough for.  Another heart mom (freaking love these women!) said it better when she said that you may not be strong enough to handle your trials but God will give you the strength.  

When I was younger I was terrified of being a parent because I didn't want to deal with all the worry it entailed.  And I was totally right.  Being a parent is terrifying.  It was bad enough with a healthy child.  Now it can be a nightmare.  In case you didn't know.  I'm human.  And those moments where I sit down and realize how blessed I am don't happen EVERY night.  Some nights are filled with doubt.  Lately they're all filled with panic attacks seeing as Liv's surgery is one week from today.  But if I remember to look closely at my day and see each little miracle for what it is I remember that I can do this.  I can do hard things.  I may not be strong.  I may lock myself in the bathroom and cry on a regular basis.  I may live in clutter.  I may not get to enjoy a normal life right now.  But I find that strength.  That cry feels excellent.  The clutter is just that and not dirt and grime.  And while life isn't normal, it is extraordinary.
And just for fun.  Isn't it amazing how you can always find a theme song for certain times in your life?  Well, this is mine and Olivia's song.  Pretty sure Mr. Mraz wrote it just for us :)