The star fish theory and other weird worries


Over the summer I took a sociology course at my college.  We got to the health care chapter, and I knew I was going to have plenty to say.  We were talking about faith healing, and alternate treatments.  Most of the class was supporting one of these theories and really tried to shy away from “traditional” medical practices.  I sat and I listened, and I shook my head, and finally I laughed, and I said,

“I can’t take Ava to a medicine doctor in She-walla-walla.  And if he lit some sage and chanted a prayer while dancing it would not give her a whole heart.  So let’s not give up on surgery, and hospitals and good old MDs.”

I went on to explain that NOTHING is going to grow her half of a heart.  It’s just not.  It’s not fixable.  And when the surgeons do the surgeries, they are not trying to make her a half a heart, they are trying to best re-configure the blood flow through the structure that is Ava’s heart.  (Tricuspid Atresia.)

And when I mentioned that “she’s just not going to grow a half a heart” a kind of quiet kid behind me said, “She’s not a starfish!”

At the time, I didn’t really catch the significance, and I didn’t respond to him, but I wish I could.  There’s no better way to say it.  She’s NOT a starfish, her heart is NOT going to grow back.  This is a FOREVER defect.  There’s NO CURE to CHD.  There are a series of temporary fixes to keep them here and healthy as long as they can.  But NOTHING is going to make her perfectly healthy.  NOTHING is going to give a whole heart (except a transplant, but there are MANY more risks to transplant that I don’t want to think about yet. ;]).  This is forever, my daughter is NOT a starfish.

 

Today I looked at a picture of a sweet little girl who desperately needs a new heart, and I saw where they shaved her head to put in an IV.  I remember when they did this to Ava.  I was so scared.  Her hair is going to grow in weird, it’s going to look gross, Ahhhh!!  They didn’t even manage to get the IV in, since she’s such a hard stick, but they did shave her head.  And yes, for about a month it looked a little funny.  But, in the long run her hair grew out fine.  It’s down past her shoulders now and the most awesome shade of blonde, with natural highlights AND lowlights.

There’s so many little things along the way on your CHD journey that you can’t plan for.  There’s so many little things you never thought about.  Like shaving their heads to put in IVs, or that they’re always going to have metal clasps on their sternum, or that you can’t lift them under their arms for 8 weeks after surgery.  These are all things you worry about for so long, and while you’re going through them.  Then when you look back, (or at least when I look back) these are the things you shouldn’t have worried about at all!

And it’s funny, the things people think are going to bother you are the things that don’t bother you at all.  Medicine everyday?  No big deal.  It takes 3 minutes, and it’s done, you don’t think about it until the next time you have to do it.  Seeing your child hooked up to wires and monitors?  (How can you look at that?!)  I LOVE seeing Ava after surgery.  Wires and all!  It means she’s alive.  It means she’s surviving.  She’s beautiful, even with a breathing tube, and a brain monitor, and a 5 inch cut down her chest with a bandage soaked in blood.  This is their life, it’s our journey, and it’s our NORMAL.  I bet if you ask anyone who’s been through it, they wouldn’t change it for the world.

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4 comments September 9, 2011

I don’t take baths very often, but…


I did tonight.  And as I looked down at my stretch marked stomach, it dawned on me that I EARNED those scars.

You know those times where you have that “go-get ‘em” frame of mind, and you wish you could just hold on to it.  I get them all the time.  I start new projects, get ambitious and then all of the sudden, bye bye motivation.  I need a cure for that.  I mean, I can by all means function and make it through a day, I just wish I could always feel like super mom, and super wife, and a good person in general.

Somedays that’s just not the case.

Last week I was feeling particularly jealous.  It happens often.  I get to looking through so-and-so’s facebook pictures and thinking, “what if” and “why not me.”  But then I realized that those same people are probably jealous of me for something.  For the fact that I’m a strong person?  Or that I get to peek in at my beautiful daughter while she’s sleeping.  Or maybe because I’m going back to school?  Because I have a wonderful husband who helps me with Ava, and everything else in life.

I always find myself wishing I was somewhere else, doing something else, etc.  But when I get back into my super mom, super wife, super person mood, I find I’m right where I want to be all along.

Motherhood has changed me in so many ways that people don’t realize you WILL change in once you become a parent.  (Or, well, you will if you’re doing a good job at it.)  So I can’t wear a bikini anymore, but I can swim with my daughter.  I can’t live without assistance right now, but I can always give back.  Every aspect of how I viewed life has changed since I’ve been a mom.  I care more in general, than I ever have before.   I am a way more compassionate being.  I am tougher, stronger and braver than I ever thought I could ever be.

And, speaking of—I’m a WAY better mom than I ever thought I was going to be.  When you’re a kid, you think you’ve figured out just how you want to parent.  “I’ll never do ______ because I hated it when my mom did that.”  Or, I want to be more strict, or not half as strict, I won’t yell, I will yell if they’re out of line.  You can theorize, and plan it all out and even write it down but that’s not how it’s going to be.  I thought I’d be like my mom, a “pick your battles” and “let it be” type of mom…and now I’m SO glad that I’m not.

Don’t get me wrong, I think my mother is a fabulous mother.  And I think she parented ME perfectly.  Point being, you don’t know how you’re going to parent until you ARE a parent.

Ava just so happens to be a tough love kind of kid.  Nothing gets accomplished unless someone raises their voice.  My favorite trick? “1…2…”  Works like a charm.  I am firm, but I am also so much more laid-back than I thought I would be.  I thought I’d over react at every little bump or bruise and to the ER we’d go.  But I’m so not.  Bumps, bruises, blood, as long as she’s still talking, she’s fine!  And she knows that, too.  I happen to have a tough kid, who requires me to be a tough mom.  Wouldn’t change it for the world.  (And don’t tell anyone, but I happen to think I’m pretty great at being a Mommy. ;])

So I might not be the typical 21 year old.  I may not even be a typical mom… But I’ve been through A LOT in my life, and I’ve earned my scars.

6 comments June 24, 2011

In the moment


When Ava was 18 months I said, “This is the best age!” and every month since, I’ve said the same thing.

Of course, I want the cuddly newborn Ava back, but parenting is so much easier when she can say, “Mom, I pooped.  Change me, please?”

The last month has just been amazing.  It’s been so fun and EVERYTHING is an adventure.  Plus, after her last surgery she has so much more energy!  I laughed when other parents told me she’d be much more energetic, because I couldn’t imagine it.  She’s always been go, go, go but wow!  My two year old, with only half a heart in her chest walks MILES (no exaggeration) a day!  On top of that we manage to fit in at least two hours of physical therapy (pt) a day, we do yoga everyday and go swimming at least once a week.  Every morning this week we’ve gone out and done something.  (And guess what, she hasn’t even gotten sick!!)

Ava starts daycare next Wednesday, June 1st.  And I can’t even say that I’m sad about it.  I’m amazed, actually.  I get to send my daughter to daycare.  That’s awesome.  She is such an adaptable kid and she is so engaged and wants to learn.  She’s only going two mornings a week, but now I get to go to school (and have some adult conversation) and she gets to have conversation with other two year olds!

We went this morning to look around and after about 30 seconds of, “Mom, can you come with me?” Michelle walked her into the living room with the other kids and off she went!  She found a dollhouse and the same play kitchen we have at home and I knew this is where she was going.  She was so happy, and right at home so quickly.  The owner, Michelle was so surprised at how quickly she jumped right in, and so excited when Ava listed all of her colors, said her ABCs and counted to 10 then “11-14-16-17-20!”  She thinks she can help another two year old, Hunter break out of his shy shell and play with the others.

Speaking of—the daycare provider had NO issue what so ever with Ava having a heart condition and a limp on her left side.  You know why?  Her 13 year old has hydroencephaly.  (Sorry if I spelt that wrong HPE moms! Feel free to correct me!)  And she totally got my feelings of, “Should I send her? Should I not?”  But she feels completely comfortable dealing with a kid that is prone to turning blue and bruises is she even thinks about falling down.

You know what else we accomplished today?  Ava got her first scraped knee.  We went on a nature walk and she refused to be carried up a fairly steep hill.  It was no surprise when she fell.  She stood up, said “Ow.  Wait.  Ewwww!”  brushed her knee off and kept right on walking!

It’s still pretty amazing to be able to say post-Fontan, even if I have to add “and post-stroke” under my breath.

I’ve said it before, but it’s a pretty incredible gift to be able to experience the world through your child’s eyes, looking at everything as if it’s new with an indescribable sense of wonder.  If only we could always keep that perspective.  The world would be a much more beautiful place.

2 comments May 26, 2011

Today was just one of those days :]


Not the bad kind, the good kind.

Today was just one of those days where you really take a look at your life and realize all the great things you have in it.  My two year old woke up (exceptionally early for her) and proudly announced, “We’re going to the Heart Walk today.”  And we did.

I got to speak, and tell (a very condensed version) of Ava’s story.  I’m sure I educated at least one person at the walk about CHDs.  And, I got to tell everyone that KIDS HAVE STROKES, TOO!  It sucks, but it happens.

Then I got interviewed for the Portland Press Herald for the SECOND year in a row.  And Ava got her picture taken, I’m sure it will be on the American Heart Association’s walk page in a few days.

We went out to lunch with family that lives out of state and Ava had a blast.  She wore her red “Heart Hero” cape from the walk since she didn’t actually get out and walk this morning because it was very wet and drizzly here in Maine this morning.

On our way home from lunch Ava said, “I’m going to go home and watch an Elmo so I can snuggle Mommy!”  And we did just that.

She got to eat cake in the middle of the day for no reason.  She had her face painted at the walk this morning.  She got an awesome cape (which we tell her makes her look like SUUU-PER GROVER!).  She got to see her Grampy-Grampy, her Grammy and her Uncle Mike.

We raised more than we did last year, $1,100!  I had great people show up and support us, and Ava.  I got an amazing donation for Barbara Bush Children’s Hospital.

Ava just curled up on me before bedtime and it was just one of those moments that you are so glad you got to be a part of.  With her hearts still painted on both of her cheeks, exhausted, just laying on her Mommy.  Being able to hold her, I just feel so incredibly lucky.  This little girl who’s had 4 heart surgeries and a stroke, and she’s still here.  And she’s so eager for life, so engaged, so adaptable.  She’s just a miracle, and she was the reason today was just one of those amazing days.  ❤

1 comment May 15, 2011

It was a long day.


I walked out on my therapist today.  Yup.  After hearing that I had “mommy issues” and “oop! Walls are up! Oh, now there we go, they’re down again” about 15 times each I was done.  The reason I went back to therapy is to have someone listen to me about how having a special needs child is.  Someone to take in my day-to-day.  Someone to maybe sympathize with a little.  I realized there is no way that no one not living this life is going to understand.  (Whew, that’s a mouthful!)

Instead of being a safe haven for venting it turned into a “let’s look at your child hood and see what could have caused this” type of place.  Nothing in my childhood caused me to have a sick kid.  Yes, he was probably right, something in my childhood caused my ANXIETY, but that was NOT what I wanted to talk about.  Yet session after session it turned into, “maybe you wanted more attention from your mom” or “maybe it’s because your mom had that one stupid boyfriend who was a jerk to you.”  That is probably NOT what made me anxious.  And that’s definitely not what is making me fearful of losing my child, ok bud?

I finished off the session by tell him this, “I was finally okay with Ava having a congenital heart defect.  I was finally okay with that diagnosis.  And then she had a stroke.  And that is probably not the end of all the bad things to come.  This is just one more thing I have to accept and I’m just simply not ready to yet.  I don’t know if I’m going to be okay with it for a long time.  It’s not something a mother should have to accept about their child.  The fact that they are sick, they’re never going to be healthy, and that this is LIFE LONG.  Just because her surgery is over does not mean that she is fixed.  Life is always going to be full of Doctor’s appointments, of check-ups, catheterizations, and who’s to say there won’t be more surgeries or strokes.  Theres always going to be SOMETHING that I just can’t be okay with.  It’s just not fair, and no, you’re never going to get it because you don’t live it.  No one is going to get it unless it happens to them.”

His reply, you ask?

“Did the Doctor’s tell you that this is going to be life-long?”

At that point I was done.

And to clear it up—Yes, CHD is life long.  She will always need check ups and medication.  She is NEVER going to have a fully functional heart.  She was born with half of a heart.  The right side is very small.  Surgery can not fix that.  Surgery can make her blood flow better and more “properly.”  She will NEVER be fixed.

Another thing to make clear:  I am in NO WAY mad or angry that I have the responsibility of taking care of a child with special needs.  I do not mind the medication, the doctor’s appointments, the physical therapy, I don’t mind any of that.  What I mind is having to watch my smart, precious, beautiful two year old go through all of that.  She should be at daycare and running around on playgrounds.  She shouldn’t have the limp on her left side.  She shouldn’t have the scars on her chest & tummy.  I’m not ashamed of any of these things.  Not at all, not even a little.  I am SO beyond proud of her, and SO blessed that I get to be a part of her life.  But I am never going to be okay with the fact that she has had to go through any of this bullshit.

Well, now that that’s all out.  Here’s a random piece of my day yesterday.

We signed Ava up for a membership at the YMCA.  She LOVES swimming, we love taking her swimming, and it’s a good way to sneak in some really good PT.

So we went swimming.  And after I took her into the locker room to get her changed to go home.  A mom walks by me as Ava’s fussing and her two kids are asking for “just five more minutes” and she says, “This is always the worst part.”  And she double-took.  I was putting a diaper on Ava, and her chest was exposed.  I didn’t even notice what she was gawking at and simply replied, “I can see that.”  Didn’t think a thing of it.  I feel normal looking at Ava’s chest.  It is her normal.  Honestly, I find myself looking at other people’s kids and thinking, “Hey, something’s not right there…something’s missing.”

Now, back to another fun topic brought up in therapy today.  And I quote, “It’s actually unacceptable that you don’t have any friends.  You need to find some volunteer work and find someone.”  Okay, so you take care of my scheduling and babysit for me, and gladly! I’ll do some volunteer work.  Hello?!  Does he consider that I don’t have friends because I have a pretty full schedule with a two year old.  (Never mind that he forgot, yet again, the fact that she has special needs.)  This guy was truly the most insensitive therapist EVER.  It’s just my luck that I always pick the crappy people to try to pursue friendships with.  Or, the fact that all of my friends lives states, and some even countries away from me.

I just keep thinking of things he says!  So after my rant of Ava’s health he says, “You told me all was well and she was recovering nicely when you first sat down.  Why is this all coming out now?”  Because, technically speaking she IS doing fine.  She IS recovering nicely.  She’s walking, she’s RUNNING, that’s more than we thought might happen.  She is doing well, but it doesn’t take away the pain from it having to happen at all.  The fact that a two year old has had a stroke is the problem, not the recovery process.  The fact that I have to accept that she has had a stroke is disgusting enough.  I’m overwhelmed with joy and I am SO proud of how far she has come, but it’s still sickening that she had to recover from anything to begin with.

And, he won’t take away my diagnosis of bipolar because I made no progress in therapy.  Even though my psychiatric nurse practitioner already confirmed that that was a false diagnosis made way too quickly at the ripe old age of 15.  He told me I have the weirdest case of anxiety he’s ever heard of.  Because: 1.) I don’t just have an anxiety attack.  I have to make it through the day and know that Ava is safe and in bed and has what she needs, etc.  and 2.) I feel more at ease when I am insanely busy.  I am not anxious when I have deadlines to meet.  (Out of the house by 9:15 at the appointment at 10:45 lunch at 11:30, swimming at 2:45, etc.)  I am just more content and preoccupied when I have a full schedule.  I don’t think it’s weird, that’s how I’ve always been for as long as I can remember.

It was a long day.

Ending on a happier note, May 1st is TWO YEARS since Ava’s Bi-directional Glenn (surgery) and May 11th is TWO YEARS since her emergency LVOTT surgery.  Wow.  Crazy how quickly that all goes by.  I can’t wait until I can say one year, two years, three years since Ava’s Fontan procedure and stroke.  I know looking back it will just be a distant memory like her first 3 open heart surgeries were.  It’s harder to hold that attitude when the emotions are still fresh in your mind, though.  And!  This will be my 3rd Mother’s Day with Ava.  The first one we spent in the PICU waiting for her surgeon to be flown back to Maine to do her LVOTT, so I always feel extra special that we get to celebrate together at all, and being at a home is an added bonus! ❤

14 comments April 26, 2011

It’s time for change


Some of you probably know I’ve been on a tear lately re-arranging and cleaning and just making little changes to make myself happy and just simply, for change.  Newness.

My plan is now to carry this over into my life.  All of it.  Every aspect of it.  So, every month that is left in this year I am going to make a goal.  And I AM going to accomplish the goals I set.

 

April- Make exercise a regular part of my life.

I do exercise.  But it comes sporadically.  I really do need to take better care of myself.  And by making this a goal I am NOT calling myself fat.  I simply need to get a bit more active than I am.  I just need to get healthy.  I do have a few specifics that I need to work on.  I’m starting small.  My thighs could lose an inch, and I would love to lose my muffin top.  Those will be the first areas I work on.  And I really want to walk more often than I do.  We own a treadmill, and I need to use it.  And with spring and summer approaching, I need to walk outside and get myself and Ava some fresh air.

May- Stop complaining.

That’s right, I’m a complainer.  I know it.  I hate it.  Most everyone around me knows it and hates it, too.  It’s not that I even complain about the “big things” in life.  I complain about doing laundry, a headache, being hungry, literally everything.  It’s time to get rid of that.  I am too negative.

June- Become a better wife.

Can you believe that with all the things going on in my life that my marriage has been pushed to the back burner?!  It’s a common problem with a lot of couples.  I need to turn things around.  Don’t get me wrong, things are not BAD by any means.  Things are way better than they ever have been.  So why stop here?  I need to listen, consider, and care just a little bit more.

July- Learn to love my body.

Self-esteem?  What’s that?  Didn’t we go over that in like…grade school?  It’s a lost concept in my life.  I am not fat.  I am…dare I say it?!  Pretty.  I just need to really convince myself of these things.  I need to find more than my toes to love about my physical appearance.  No, it’s not as deep as my other goals, but I need to do it for me.

August- Find an “outlet.”

I have always been an incredibly stressed person.  I worry ALL the time.  I can’t help it….but I need to.  Stress literally makes me sick way more often than a lot of people may know.  I mean, physically ill.  I need to find something, yoga, painting, meditating, ANYTHING to de-stress.  I need to learn to breathe and trust that things are going to be O-K.

September- Find confidence in myself.

I second guess everyone.  I should be able to trust myself.  I should be confident in everything that I do.  I would love to be able to pursue everything in my life with conviction.

October- Find ways to make every moment count.

This covers A LOT of different aspects.  I’m bored often.  I need to find ways, and things to keep myself occupied.  I need to be a bit more fulfilled with my life and what I do with it. I need to accomplish small things all day long.  If I’m going downstairs I need to grab the dirty dishes.  If I walk past the laundry room I need to stop and switch the laundry when I notice it’s done.  If I have something I want to do, I need to do it.  That opportunity might not wait around.

November- Give back.

I need to give credit where credit is due.  I want to think of other people more often than I do.  I want to offer more words of encouragement, lend a better ear to listen, give when I can.  I’ve learned firsthand that the best gifts are not always huge or shiny.  Sometimes the best gift is a hug, a shoulder to cry on, or a card.

December- Celebrate.

Celebrate a year full of change.  Celebrate life.  Celebrate living through another year, and (hopefully) celebrating Ava’s 3rd birthday.  Simply enjoy the gifts I have been given in life.

 

That’s a lot of work. Thanks for reading, and thank you in advance for the support I know I will receive in accomplishing all of these goals. ❤

 

Add a comment March 27, 2011

Why do I still feel so bad?


There’s so much good going on all around me. I can’t figure out why I’m still stuck in such a bad place.
Ava had a stroke 2 weeks and 2 days ago, and she’s already walking again. She also had a very successful (4th) open heart surgery 2 weeks & two days ago. It hurts that I can’t think, and focus on the great news that her heart is working very, very well. All I can focus on is the fact that she had a stroke. The fact that she had to start all over again with fine and gross motor skills that she had mastered already.
It’s so heart breaking to watch her attempt to do things that two weeks ago she wouldn’t have hesitated to do. It’s amazing to watch her overcome every obstacle again and again. But she shouldn’t have to.
I knew I was bound to have a few “pity me” days. I just really didn’t think they’d hit me THIS hard. I feel like I’m back at the beginning. I finally just got comfortable with the diagnosis of CHD, and now I have to be comfortable with stroke? I know the only thing that made CHD easier to deal with and talk about is the fact that I educated myself about it. I am not yet ready to educate myself about stroke. It took me a while to really learn some facts about Congenital Heart Defects. I researched specific questions that I had, sure. But now, I can rattle off almost any fact you want to know. I can also make some extremely intelligent guesses as to what’s going on, why and how in the abnormal structure of CHD hearts. I am just not ready to learn about massive embolic strokes. Not in children.
It brings me back to the “why me?” The why HER. There are so many people out there that have healthy children. Why was Ava not born healthy? Why does she have to go through the struggle of invasive heart surgery, hospital stays, pokes & prods, and now a debilitating stroke? What is God trying to teach me? And why in the world would her spite a little kid to teach me whatever lesson he’s aiming for? It’s just not fair.
I can really only take so much. I’m at the end of my rope, over my limit, and I feel like I’m losing it.
It’s just simply Not. Fair.
I finally let myself think, “It can’t get any worse than this, it has to start getting better.” And it just doesn’t. There’s always an added, “and…” “but…” or “well….”
Ya know, if it meant having a healthy child, I would gladly take the title of an “average mom” and give up the “strong” and “amazing.” I’m tired.

1 comment March 6, 2011

Post….stroke?


It seems like the excitement of saying POST-Fontan wore off way quicker than we could have imagined.  It’s just not fair.  Plain and simple.  Strokes and heart disease are supposed to happen to old people.  Not sweet little kids.

Ava did indeed stroke during her surgery, and the clot dissipated into lots of little clots, and they traveled in her brain.  The damage is extensive, but a full recovery is possible.  They do not know what will happen as she grows, though.  There could be a chance of learning disabilities.  The stork happened in her right brain, behind her visual cortex.  It did not affect her vision, however.  Her face is fine, her speech is fine.  We don’t know what will present itself in the future.  Cardiology plans on closing the fenestration in her heart to hopefully prevent more clots from traveling.  They are not sure if they are going to put her on Coumadin or keep with the aspirin and add Plavix.  If you don’t know, Coumadin requires A LOT of blood checks in the hospital to keep levels exactly where they should be.  This is not something we really want to have to deal with, but obviously will if that’s what we need to do.

Anyways, I didn’t want to write this in technical medical terms.  I don’t want to be informative right now.  I want to vent.  NEED to vent.

I just can not believe that just last week Ava was running across the living room floor to me.  I can’t.  It hurts so much to think that now she can’t walk.  Can’t take a step.  Can’t bear weight.  She can’t even sit up.  Not at all.  Just slumps right over.  She can move her arm pretty well, but that’s not what my mind wants to focus on. 

She’s only been able to walk for a year.  One full year this February.  And now, she can’t walk.  What. The. Hell.  I just can’t imagine how much her life is going to change, and for how long.  It’s just not fair.

The surgery went so well.  And then we find this out.  It just literally is making me sick. 

Do I quit my job?  What do I do this fall when we were going to send her to daycare?  I can’t fathom sending her off to school.  I hate this thought…but MY kid is not supposed to be “the disabled kid at school.”  A few days ago I had the most bright, brilliant little girl.  Now I feel like I have a newborn that can talk.  I feel robbed, and I’m sure Ava does too.  I can’t speak for her, I’m not trying to.  I, ME, I….need to speak.

It seems so unfair to me that all the doctors and nurse standing back explaining all of this to us have healthy, “perfect” kids at home.  They can not possibly understand how I’m feeling watching my daughter go through this.

We were down at MRI today, and Ava had a sheet of stickers.  She was trying to pull the sticker off to put it on her Johnny, and she couldn’t do it.  She couldn’t reach her left hand over to hold the sticker sheet.  It broke my heart.  A nurse stepped in to help her, but there is NO WAY she understood how we felt at that moment. 

I want my vibrant little two year old back.  It’s killing me to see her this way.  I am at my wit’s end, and trying so hard to hold it together in front of, and for Ava.  It’s easier said than done at this point.  I just want to scream at everyone I see, just to let them know what’s going on in my life, and how I feel.

2 comments February 23, 2011

The randoms


I’ve had a bunch of things pop into my mind over the last few days, and I thought I’d share a few with everyone.  :]

When Ava was little, about a month and a half out of surgery, I finally let a friend hold her.  I never let anyone hold her when she was little.  (For those of you who don’t know, for 8 weeks after open heart surgery you can’t lift the kids under their arms, like you would normally pick them up.  The sternum is cut during surgery, and needs time to grow back & heal.)  So this friend went to sit her up, and grabbed her under the arm and sat her up.  I freaked out.  I was so angry, at myself—for possibly not being clear, and at this person because I knew I had told her that she could not pick her up under her arms. 

Then another time…

I handed her to a friend to hold her, and she kind of tensed up and said, “Wait!  How do I hold her!  I don’t know how I’m supposed to hold her.”  And, at this point she was not fresh out of surgery, and you could lift her under her arms.  I got mad then, too.  I wanted to scream, “She’s a normal kid!!  You hold her like you hold your nephew, or any other baby for the matter!” 

It’s funny.  Both situations were no one’s fault, and both “mishaps” were just that, mishaps.  Funny to think back on.  I expect people to be able to understand, and remember because I have to.  That’s just not the case.  And, in retrospect, I prefer the latter.  I would much rather people ask how they should hold her than to guess and end up hurting her. 

At this point, 4 days away from surgery—we just want it over.  The waiting game is getting old.  We’ve known the date since December.  This week is dragging.  BUT, we’re starting to get….excited?  That’s not the right word.  But when Ava was born we were so excited for the time for the Fontan to come.  It’s the last surgery, the stage 3 of 3 for the “mending” of Tricuspid Atresia.  This is supposed to be…”the end.” (OF SURGERIES!) And now, I’m starting to remember how amazing it is to see pink toes & fingers on your baby.  I’m excited to see her pink fingernails.  No more blue lips?!  Hopefully an improvement in breathing!  Yay!  Good things are sure to come.  (Granted, that’s after making it through surgery and hopefully little to no complications during recovery.)  Anyone affected by CHD will understand that, anyone who hasn’t experienced CHD will think that I am thinking extremely negatively by saying IF she makes it, IF there’s no complications… But that’s the reality of open heart surgeries and kids living with Congenital Heart Defects.

But, here is something that should ease all of your minds.  (The ones who haven’t seen it themselves, and to those of you that have—maybe you’ve never thought of it this way before.)

When you see your baby in the PICU for the first time after open heart surgery they are connected to SO many wires, machines.  IV’s, heart monitors, o2 monitors, blood re-infusions, blood transfusions, brain activity monitors, medicine pumps, etc.  And to anyone who hasn’t seen their child laying there connected to all of this, that is what they are fixated on.  The machines and the noises.  When we walk into the PICU for the first time after surgery, we see our baby.  We see our sweet little girl.  We see that she is alive.  We see her fighting.  We see our daughter, Ava Elaine Allen.  The surroundings disappear.   The machines and the noises and just there to make sure she is okay.  All we care about is our baby laying there, waking up.  It’s not scary, usually it’s blissful.  So the machines are loud and take up too much room, but there in the middle of everything is out PERFECT little girl.  And that, at that moment, is truly all that matters. ❤

3 comments February 9, 2011
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You live a crazy life


This past year, close to Christmas, I made the “mistake” of taking a “friend” along with me to get some things that I would be dropping at the Ronald McDonald House.  (I warn you, I will be using “quotations” a LOT during this post as there are a lot of words I am using LOOSELY.  I say “mistake” because it wasn’t a mistake at first, but I soon realized it really was.  And I say “friend” because as this tale unfolds you will realize she’s not a friend, and she never really had been.)  Wal-Mart was busy and I was whipping my cart down the aisles ready to be anywhere but there.  I picked up some Tupperware, a card, and then went to pick out some sprinkles and frosting for some cookies. 

Said “friend” was on the phone the whole time we were there.  Never mind the fact that I hadn’t seen her in months, but I wanted her help and her opinions.  She finally hung up and I was explaining that I needed a few more boxes of spaghetti, another jar of sauce and then I needed to pick out stuff so that the kids could decorate the cookies.  (I was dropping off cookies at RMH and I wanted to bring the things to decorate them so if there were older siblings at the house they would have something fun to do.)  And as I’m explaining all of this, and my schedule for the next week, “friend” says, “You live a crazy life.”

It probably shouldn’t have hit me as deeply as it did but, it left some questions in my mind.  “My life is crazy because I bring my child with a terminal illness to the doctors?” (I mean, yeah, we go a lot but they are all necessary appointments.)  “My life is crazy because I’VE been in the Ronald McDonald House and know what would have helped me, so I’m crazy to give back to them what I think could help someone else?”  “My life is crazy because this year I have money to help someone else and I WANT to?”

No.  Your life is crazy.  (Let’s not talk about the fact that you don’t care about humanity unless they are directly affecting you, or the fact that the most serious thing you’ve ever had to deal with in your life is a bad break up, orrrrr the fact that you could never be bothered to take a moment out of your drama filled life to give back.) 

That is my normal.  The Dr’s appointments, (even around Christmas!) talking about people I’ve met online that have been where I am in my life, and giving back whenever I can.  Reaching out because there is a possibility that I might touch someone else’s heart when I do.  Busy, yes.  Crazy?  Absolutely not. 

I’m sure it’s hard for people to understand why I talk so much about Ava and her CHD and about the wonderful people I’ve met online and all of their sweet babies.  I talk so maybe you can TRY to understand, just a little.  I talk so you’re aware.  I talk about the people I meet because they mean a lot to me.  I follow along with their journeys.  They let me into their life, a VERY personal aspect of their life, and I treasure that.  I love that these people have given me a chance to watch them, and their children grow.  I love to watch the awareness they raise, and the next steps in their lives.  Living day to day with a kid with a Congenital Heart Defect IS hard, but there is a lot about it that I LOVE.  I love that I have opened my eyes to the needs of the world around me.  I love so many people I have met along the way in our journey.  I love the energy I have for life now.  I do not live a “crazy life” I simply live a more enriched life now that Ava is in it.

2 comments February 7, 2011
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