Wednesday, April 27, 2011

oh blah dee, oh blah dah, life goes on....

 I was on such a roll!!  What happened? 
I ran out of things to say.  Maybe.  It just seems so unimportant.
I'll update you on the kids though!  Medical updates, lucky you!
OK first up...Dillon.
Took him to the orthopaedist.  Turns out his funny bone is bruised.  Since it's a nerve, it will take a little while to heal and to stop hurting.  It will be fine though.  While there, they talked about the abnormality they saw at the ER.  They told us at the ER that the abnormality was where the pain is.   However, it wasn't.  It is right at his joint.  They took an x-ray of the other arm, and it also has the same abnormality.  He is actually missing part of his elbow bone, and the cartilage.  This is on both elbows.  Right now, it doesn't cause him any problems, but in the future, it could cause catching and pain.  Time will tell!
Zachy.  You didn't know there was an issue with Zachy.  There isn't.  Phew.  The doctor got an alert from his transmission saying a lead wasn't working.  We had to go in to make sure it hadn't come loose and wasn't floating around in his heart!  Turns out, it was a glitch in the system, and his lead is working just fine.  Thank goodness!!
Matthew saw the ophthalmologist the other day.  We really, really don't like him.  I could go on and on about why we don't, but that's pointless.  Anyway, the good news is he decided he would refer us to the glaucoma doctor off base, and won't be seeing Matthew anymore.  I hope we like the glaucoma doc!! 
Let's see...I think that's it.  We have dentist appointments on Friday, which is always so much fun.  Ha!!  Actually, my kids love the dentist, so it's not bad. 
Other than all these appointments, we have been so busy with school and swimming and play practice.  Zachy passed to the next level in swimming.  He had his first lesson on Tuesday.  He moved from the therapy pool, to swimming laps in the big pool.  He really struggled and his teacher told me he really lacks the endurance at this point to make it across the pool.  Hopefully, he overcomes this quickly!
Collin chose not to do swimming lessons this month.
Emily is in her same class, doing so great.  I'm so proud of her, and I think she'll be passing pretty soon.
OK, I'm done rambling.  Maybe I'll come up with something good to write soon!

Thursday, April 21, 2011

Time Management Skills

Time management skills. 
Somehow I missed the class on this!
If I took the class, I failed miserably.
Most of the time I fly by the seat of my pants.
When it comes to homeschooling, people have told me I need to schedule everything.
To me, part of the glory of homeschooling is not having to have a schedule.
I understand the value of a schedule, but since having kids my life has not been scheduled. 
Actually, our lives are normally scheduled around doctor appointments, and just life in general.
The problem, for me, comes with cleaning and schooling.
You see, I will tend to explain something to the kids, then as they get busy, I get busy doing housework.
Often though, I get sidetracked by the housework and it takes me a while to get back to the school work.
The funniest thing is you really can't tell any of that by the looks of my house.
Lately though, I've changed things up.  Gone are the workbooks.  Gone are most textbooks.  We are learning by living life.  OK, I'm using unit studies, but I can see us veering from prewritten studies soon. 
For example, we are currently learning about gardens.  Involved in this study is learning about Monet, George Washington Carver, and different types of gardens.  That's just been this week, and it's a four week study.  Anyhow, today I took the kids to the arboretum.  We sprawled under the crab apple trees and the kids did their copy work (vocab words and words of wisdom).  We discussed different types of gardens, and I read a chapter of The Secret Garden (our current read aloud).  We then spent the afternoon tromping from the rock garden, to the rose garden, to the water garden, to the shrub garden, to the edible plant garden, and on and on.  Matt met us there after work and we went to pizza and discussed what we would need to grow in a pizza garden. 
It was so, so great, and I'm sure the kids will remember more about this than reading about gardens in a book.  We have made plans to go back throughout the spring and summer to watch the plants grow and change.
All of this is to say, it was really hard for me to leave the house.
I knew if we left, I couldn't switch the laundry.  I couldn't do the dishes.  I couldn't pick up anything.
I'm learning that the housework isn't important.  The relationship with my kids, and them learning is far more important.
The problem is, while everyone has chores, the house has been pretty neglected this week!
I just really need to get my time management skills polished!
Love this poem, though, because it is so true.

Mother, oh Mother, come shake out your cloth

empty the dustpan, poison the moth,

hang out the washing and butter the bread,

sew on a button and make up a bed.

Where is the mother whose house is so shocking?

She's up in the nursery, blissfully rocking.

Oh, I've grown shiftless as Little Boy Blue

(lullaby, rockabye, lullaby loo).

Dishes are waiting and bills are past due

(pat-a-cake, darling, and peek, peekaboo).

The shopping's not done and there's nothing for stew

and out in the yard there's a hullabaloo

but I'm playing Kanga and this is my Roo.

Look! Aren't her eyes the most wonderful hue?

(lullaby, rockabye, lullaby loo).

The cleaning and scrubbing will wait till tomorrow,

for children grow up, as I've learned to my sorrow.

So quiet down, cobwebs. Dust go to sleep.

I'm rocking my baby and babies don't keep.

by Ruth Hulburt Hamilton

Wednesday, April 20, 2011

Quick Update on Dillon

I decided to take Dillon to the ER. 
It was a pretty inconclusive night.
After reading the x-ray, they said that there was an "abnormality" at the spot where he is having pain, but they can't determine if it is from this injury or not.  He has to see an orthopaedist.
I just think it's kind of funny.  You have pain in a very specific place, and there is something abnormal about that bone, you'd think it would mean this is what was causing the pain.
What do I know though, I'm no doctor!
I'll keep you posted after we see the ortho.

What to do, What to do...

I normally wouldn't blog about this, but I am, just because.
Friday, at play practice, the kids were playing on the playground equipment.  Apparently, Dillon (12) fell off of something and hit his elbow on the corner of something.  On what, I'm not sure.
Never did I hear about it at practice.
Occasionally, I seem to remember him saying, "oh, my funny bone hurts".  Never anything major.
Today he starts telling me that since hitting it Friday it has hurt him a lot.  He says every time he bumps it on something it hurts.  I tried to touch it and he about jumps out of his skin.
He told me that he will wake up in the night and try to sit up but it hurts and he cries.
Again, I've never heard about this.
There is puffiness where it hurts.  Not a ton, but you can see it.
I had planned to take him to the ER (the pediatrician won't see them if they think it could be broken, the choice is the ER or nothing), but then he does things like run around and act like nothing is wrong.
Do we just let it be and say that since we haven't heard anything about it, it must not be that bad?
I just don't know that I want to spend my night in the ER, for nothing.
In the end, I'm sure I'll take him, just to be sure.
And that ends my totally pointless blog post for today!

Tuesday, April 19, 2011

Something I will Never Understand

Last night, I went outside my comfort zone and went to a Thirty-One party.  It was out of my comfort zone because it was with people I didn't know very well.
The party itself was great, and I'm hosting my own party.  If you'd like to order anything, you can do so here.
The thing that struck me odd was a comment made flippantly to me.
I was sitting next to a nice lady, and we chatted off and on.  I honestly do not think she meant anything by this, it is just her perception, and it's ok.  I wasn't offended, it is just common and I don't get it.
Someone commented on the fact that we were both military wives.
She asked me what branch we were in.
I told her the Air Force.
She then commented that she doesn't like Air Force wives.
Umm, ok. 
She didn't seem to mind me, and is coming to my party, ha! 
It is common though. This battle between the forces.
She was talking about how needy AF wives are, and that they can't handle their husband's being gone for any amount of time.
While I'm grateful that Matt isn't deployable, there have been many times during our marriage that we have been apart for long periods of time.  Months, even.
I know she wasn't specifically talking about me, as she knows nothing about me, but it just felt weird being clumped into this stereotype.
I like to think I'm stronger than the type of wife she was talking about.
I have only lived in base housing once, and was surrounded by other AF officers.  This woman is a Navy wife and lives in AF base housing, so she is surrounded by AF wives.  Maybe this is where these feelings come from.
I don't like it.  I don't mind the friendly banter that inevitably happens when the enlisted members find out they are from different forces.  It's the "we are so much better than you because we are Navy(or Marines, or Army)"  that I hate.
As I see it, we're all in this together.  As wives, we all have the fear of losing our husbands (OK, maybe not me since, like I said, Matt isn't deployable).  We all deal with deployments (most of us!). 
We're all in this together!  Let's get along and instead of not liking me because I'm an AF wife, how about supporting me because I'm walking the same walk as you?
I will never understand.

Saturday, April 16, 2011

I Won't Be Ready

Our eldest two are away at a Pathfinder lock in tonight.
I miss them!
They won't even be gone 24 hours, but it just isn't the same without them here.
I am going to be in big trouble when they grow up and begin to leave.
People have told me that when it's time for them to leave, I'll be ready.
I don't see it.  I can't imagine ever being ready for them to leave.
I genuinely enjoy being with my kids.

Of course there are times when they drive me up the wall, but overall, I love having them around.
It just so happens that I have great kids, so it's easy to love having them around. ;-)

I had an old friend tell me the other day that I am crazy because I am with my kids all day, every day.
That makes me sad.  Why does it make me crazy?
Oh well!  I'll be crazy!
Hurry up Noon on Sunday...I miss my kids!

Friday, April 15, 2011


We all know how much I love the Duggars, and I have truly learned a lot from them.  When Jim Bob and Michelle spoke at the Homeschool Convention, they spoke to my heart. 
I'm always telling Matt that such and such a book said this, and he says, "and how many kids do they have?"  Almost always, the author has less kids than us, and then Matt comments that I could write the book and have more knowledge than the author.  This may be true, who knows.
The Duggars, are the exception!  They know a lot about raising kids!  They have been here...right where I am!  And survived!
I have taken so much from them and applied to our lives.
One thing we have applied is a loose buddy system.  The Duggars have an older child paired with a couple younger children.  They are buddies.  The older one helps the younger ones throughout the day.
We started to realize that we need a buddy system, or else I'd be spending all my time tending to the needs of the little girls. 
We have assigned the boys a rotating schedule to be Emily's buddy.  Her buddy buckles her in the car seat, helps her get breakfast, helps her put on her shoes, and any other little thing that she may need.  Of course, big stuff like kissing boo boos and the sort come to mommy. 
The boys usually love the system because it makes them feel important and yet since it isn't every day, they don't get bored with it.
Emily takes this very seriously and won't let anyone unbuckle her in the car except her buddy, and if you are her buddy that day, you lose your name.  She simply calls you, 'buddy'.  It's awfully cute.
The other day, she was wanting some toaster waffles from breakfast.  I was busy tending to Nannie and getting ready to start laundry.  I asked her if she could find her buddy and ask him to help her with that.
She said, "Collin's my buddy, but you're my best friend!  I need YOU to do it". 
Point taken...I got her the waffles.

Thursday, April 14, 2011

I hate feeling like this

Everyone once in awhile, I get to feeling so down about the CHD world.
I know I've written it before, but it just kills me that so many people deal with this.
I know that writing about it can't make it go away.  I just hate it so, SO bad.
Last night I was thinking that if you want job security, you should become a pediatric cardiologist.  There will never not be a need for them.
At the YMCA I am constantly scanning everyone's chest.  I never see any scars.  I wonder why.
I scan because even though I hate all of this, I'm always desperately looking for someone who has been where I have.  I need someone I can connect with.  Someone who understands what it's like to have gone through this hell.  To live this life.
I have loads of CHD friends on line, but I really need someone in real life.
Tonight is my second meeting with the local Mended Little Hearts group.  Could you please pray for me?  That I might meet someone who I can share my fears and joys with.  I would so appreciate it.
I know we'll be ok, and I will survive all of this.  I just need to be lifted up in prayer once in awhile.  :-)

Wednesday, April 13, 2011

When Mama Ain't Happy,Ain't Nobody Happy

Today was a grumpy day.
I have no idea why, but most of the day, things just rubbed me wrong.  Kids kept touching me, and everyone wanted something.
Really, no different than any other day.  I was just grumpy.
And as the day went on, I noticed that everyone around me was getting grumpy.
All day I thought, 'my poor kids don't deserve the grumpy mom they got this morning'.  I just could not shake it.
While I was thinking about how to get out of the funk, I was hit with the need to share with all you moms something that has taken me years to figure out.
I've been doing this mom thing for almost 15 years, and it's just now hitting me.
We've all heard it.  We've all said it.  But do we all believe it?
When mama ain't happy, ain't nobody happy.  For some reason I have always just assumed that was just a cute little saying.  Then I started to really pay attention.  Literally, within the last few months.
Moms, I challenge you, the next time you are grumpy, look around you.  See what happens.
When we start looking like this

Pretty soon everyone is looking like this

WE HAVE POWER!!  These little people react to how we act toward them.  I know, this is a total 'duh' moment, but honestly, think about it.
Nine times out of ten, if your kids are grumpy and fighting, all you have to do is take a hard look at yourself.  Have you been grumpy?
Now, don't get me wrong, I know there are those days when you try your hardest to be happy and your kids are still bickering and whining and just being little grumps.  I get that...believe me, I do.  I still think though, that if you went to the beginning of the moods, you could figure out what happened.
When your darling little child said she didn't want to wear the outfit you had picked out for her, did you react kindly or was there some irritation in your voice?  I know for me, I can answer with a fake smile on my face and some an irritated tone in my voice.  Kids are smart though, they can see right through that.
That one event may set the tone for the rest of the day.  Then she gets more whiny, and you get more grumpy.  It's a vicious cycle!
We must continually remind ourselves that these little people are the biggest blessings we could hope for.  Not a single one of us deserves them, and yet, we are given them. 
So I'm challenging you, and me, to take a step back when kids are getting the grumpies.  How are we acting?  Is it time to take a timeout?  For you, just leaving the room my help.  I know for me, I have to go and pray.  It's the only thing that helps.  Let's remember how quickly this time goes and how happy these little ones make us!
~A cheerful heart is good medicine, but a crushed spirit dries up the bones.
~Proverbs 17:22
*Don't ask about this picture.  It's awful, I know.  It was taken on the cruise and we are all being silly and making mean faces.  It's the best I could come up with, because I don't normally take pictures of myself being grumpy.
Emily on the other hand.....

Tuesday, April 12, 2011

Mission Impossible

Last Sunday, the weather finally warmed up, so we took the kids to the Cincinnati Zoo.
Whenever we do things like this, I feel the need to try and get a great picture of all the kids together.
My mother-in-law and my brother-in-law's wife (I had to say it that way so you can understand the two are only related through marriage, so this is nothing genetic!) are amazing photographers.  They just have this eye for good pictures.  They also have this ability to pose everyone just so.
I want to be able to do that.
Except I wasn't blessed with that eye.
I also don't possess the patience that it takes.
This doesn't stop me from trying.
I would try to say that my issue is the sheer numbers I'm working with, but I'm sure they'll get amazing pictures of my kids the next time we see them.
Here's an example of my lack of skill.  I didn't actually take these photos, Matt did, but I was the one who threw them all up there together and should have gotten them arranged in a good manner.
At first glance, you may think this is a picture of the boys.  And I must admit, it's a decent pic of the boys, but look down low.  Miss Emily is there, barely!  What happened???

Everyone look here!  Decent smiles.  Except those pesky bugs must have been getting Dillon!  Oh and who is Emily looking at?
I then decided that since everyone was acting semi human, I would add Natalie.  I had been wearing her, so she wasn't happy about leaving me and going to Dillon.  Zachy, however, finds this amusing. Emily almost looks like a floating head.

She was trying so hard to get out of Dillon's arms.  At least Emily has a body here.

After lots of me jumping up and down and making faces and crazy noises, we got a halfway decent shot.  Too bad Nan isn't looking forward. 
That's it, that's a s good as it gets!  How sad is that??
Dillon seems to have a pretty good eye though!  He caught this fish.

Perhaps it will be our Christmas card photo this year!

Monday, April 11, 2011

Well shoot, I don't think I'm too helpful!

I was just looking at my referrals and the phrases searched most to get to my blog.
The top three searches are, TAPVR, TAPVR girl, and TAPVR mom.  Strangely, the next is TAPVR Natalie Grace.  I have no idea if there is another Natalie Grace out there with TAPVR, or if someone we know uses that phrase every time they come here.
It's odd though, because I searched those phrases, and went through several pages of TAPVR, and TAPVR girl and didn't come across my blog.  TAPVR mom brought me up on the second page, I think.
But here's the thing...I don't think I'm that helpful to someone searching for TAPVR.  When you are searching TAPVR, you are wanting information.  Where's mine?  UGH!  Maybe I need to link to some of my pages for that desperate TAPVR searcher.  But what?  Have I ever said something that made you say, "ahh, yes, now I get it"  or, "thank goodness I read that, now I have hope!" 
I don't think so.  I think it's because, I don't know..I was going to say I don't talk about it that much, but maybe I do. 
If you were desperate to find TAPVR info, what would you be looking for at my blog?  Has anything I've written ever stood out to you?
The whole purpose of me blogging about CHD is to help others have hope, but I really don't think I've ever done that. 
Enlighten me!  Tell me what to post!
Wow...spellcheck hates TAPVR and do I!!!

Sunday, April 10, 2011

Happy Family

Matt got home in the middle of the night last night. 
We are a happy family.
Add to that, the weather is gorgeous today, and I think we are headed out to Cincinnati to the zoo.
Matt is handing out goodies for the convention.
Kids are so easily thrilled.   The kids got devices to put on their ipods, between the ipod and headphones, that keeps the sound at a safe level.  They all got mints, and pens, and notepads.

I got a magnet and the best thing of all..two chocolate ears!!  WOOT!
Zachy is currently having an earmold made of his ear.  Silly kid.
The highlight of Matt's week was seeing the Blues Brothers.

Alright, the hats weren't really from the Blues Brothers concert, though he did see them in concert, as well as Collective Soul.  The hats are from a roarin 20s party the first night there..I just think they look Blues Brothery! 

Saturday, April 9, 2011

Whew..I am pooped!

Matt has been gone this week.  Partying it up in Chicago.  OK, not really.  He is in Chicago at an audiology convention though.  He left last Sunday, and a little bird (named Matt) told me that he would be home late, late, late tonight, instead of tomorrow.  Hooray!
I tell ya though, we sure do run around a lot.  Everyone is always so concerned about the socialization of homeschooled kids.  It's funny though, because every homeschool family I know will tell you we have the opposite problem.  We have someplace to be, that involves at least 2 kids, every weekday. 
It does make the time go fast when Matt is gone though!
I have to add here, that it amazes me how Matthew steps up and takes the roll of Man of the House, when Matt is gone.  He is growing up way too fast for me.  Yesterday, when I was prepping the kids for what would happen if the government shut down, he said, "how old do you have to be to get a job at McDonald's?  I'll find a job somewhere!" 
Thankfully, as we all know, the government didn't shut down and I don't have to be responsible for selling my kid out for child labor.
So today was particularly exhausting.
I think all the running just caught up with me.
The day started out good, we got up and were on time to church.
In Sabbath school, Emily was a one man show.  Boy that girl likes to be the center of attention.  She was tired though, and by the time church was over she was melting down at regular intervals.
We were in the mother's room during the service, and I hope my kids got something out of it, because I dozed off...shhh, don't tell the pastor!  I couldn't help it, it is just so dim and quiet in there, and the chair was so comfy, and the baby was sleeping in my arms, perfect dozing scenario!
After lunch, Em, Collin, and Zachy went with some friends who took them to Adventurers for me.  Thank you, Tricia! 
The other kids and I came home to discover the dog ate something that didn't agree with his tummy.  Let's just say, a dog with the runs that is not potty trained is NOT fun. 
We put him outside, but it had been pouring earlier and he became a big mud ball. 
Matthew gave him a bath, and we tried to avoid him becoming another mud ball by keeping him in.
Unfortunately, he still needed to use the yard, and used the carpet instead.  As I'm cleaning this all up, Nannie got her brother's toothpaste.  She had been into one thing after another, and for a brief moment I almost let her keep the toothpaste, but came to my senses!  She was a sticky mess and the floor was a poopy mess. 
I did learn today that Rockin Green laundry detergent rocks at getting poop stains out of carpet!!  Good to know! 
Now it's pizza time, and Collin just pulled the pizza out of the oven, only to drop it on the floor!  I guess that's my cue to get back to being a mom!
It's movie not, Voyage of the Dawn Treader is up tonight!  We'll see if I can keep my eyes open.

Friday, April 8, 2011

Has Spring Finally Sprung?

For the last five years that we were in Texas, I have missed spring and fall something fierce. I was so excited to move someplace where there was four seasons.
Only when we got here it was winter. We got her in November and shortly after we arrived, it started snowing. This was fine and dandy for, oh, about a month or two. But then it didn't stop. It just kept on being cold, and snowing.
The first day of spring came and went.
As people were reminding me that I had wanted four seasons, all I could think was that winter was overstaying it's welcome!
I still think that! Just the other day it was spitting snow. In April for Pete's sake!
Finally, trees are starting to flower. And they are gorgeous! They don't have these kind of trees in Texas! Most of the trees still don't have leaves though, and I can't wait to see the all green and leafy.
I'm anxiously waiting to see what will come of the tree in our front yard. I was certain it was a magnolia tree, but all the magnolia trees are blooming and ours barely has buds. Now that I see them blooming I realize the branches look different. No idea what it is though.
I was so hoping for some daffodils or tulips, but apparently the old owners never planted those, so no flowers in my yard. BOOOOO!!!
Our back yard is wooded, and I am just so anxious to see what the future holds.
Meanwhile, the house across the street has a tree with beautiful white flowers on it. I look at it and remind myself that spring has indeed sprung.

Wednesday, April 6, 2011

Keepin' it new motto

If you have been with me for awhile, you've seen this blog go through many name changes.
After having Nannie, I needed to change it from Five Little Monkeys to something else. I was really struggling with things, and really needed to just write. No creative juices were flowing, so I just threw "my journey" up in the title bar. Since then, I've been wanting the perfect blog name.
I was leaning towards a name like,"showers of blessings" quoting scripture. Mainly because behind everything I do is a great love and faith in my Heavenly Father. I wanted this to come across the minute you came to my blog. My faith has made me who I am.
There have been times when I thought I'd just do a CHD blog and give it some clever CHD name. However, CHD is only a small part of our lives. Even though it may seem, because of blog posts, that CHD rules our lives, it truly doesn't. What you see here is me dealing with it the best I know how, in hopes that maybe someone else will be able to relate, and know they aren't alone.
Fast forward to last weekend. The Midwest Homeschool Convention. I'd say this convention was life changing for me. Which is odd to me, because really, it was a homsechool convention, right??
God gives us what we need to hear though, when we need to hear it. I went to the convention with plans of sitting through meetings on unit studies, planning for college, and educating the child who may not learn as easily as the rest of them! And I did!! All except the last one.
I also sat through one by Todd Wilson, called Lies homeschooling moms believe. It was all about the perfect homeschool family. You know, the one that does NOT exist! It's a facade! All of it. We all struggle! We all do the best we can. And we all fall short of our own expectations. All the while, we think miss Susie down the street doesn't struggle, that she has hot gourmet meals on the table every night (and afternoon and morning!!), and that her house is immaculate.
There is no such person!
I have spent way too much time envying miss Susie. I have longed to be the person who has it together. I have felt like a failure!
That's the thing. Those of us who refuse to let the facade down, are actually a discouragement to others!
I'm not just talking homeschooling here. I'm talking every aspect of life.
I have been told, more times than I can count, what a great mom I am and that so and so has no idea how I deal with all I deal with. Let's be real....I have never, not one day, felt like a great mom. I know my shortcomings. And while we're talking about this, let me assure you, I am not the strong person you think I am. I am weak. I deal with what I deal with because I have no choice. Given the choice though, I would never choose to deal with what I have. And I praise God for holding us up through the rough times. It's only through Him that we have survived!
As I was vacuuming my stairs today (something I only do when they get very, very nasty) it hit me...I don't want to be a discouragement to anyone. I want to be an encourager.
And so, I need to KEEP IT REAL! I hope to turn this blog in a different in which you can find encouragement at.
For some reason, people tend to think that those of us with larger than normal size families have it all together. I plan to debunk that.
I don't want you to waste any of your time envious of some facade.
I hope you'll enjoy this new turn, and that you'll stick around with me as we take this journey together!!
As a side note, I'd LOVE to do a revamp of my blog to reflect the new Keepin' it Real blog. If you know a great blog designer, who designs cheaply, please let me know!
Keep it Real everyone!

Tuesday, April 5, 2011

A Rare Breed

I'm writing this for no particular reason. Nothing has happened, all is well. It's just something that I often have thought, and figure I'll write out so others can understand.
There are 35 (I think) known CHDs...ranging from simple to complex.
TAPVR is considered a complex CHD. However, if everything goes well, once repaired, TAPVR shouldn't cause any problems later in life. Now, TAPVR does present in several different ways, and can be very, very complex..then it does cause issues later in life.
However, for what I'm talking about is my kids.
Technically, they should be fine from here on out. Yes, Zachy has a pacemaker, but he should be fine.
Most TAPVR kids have the same prognosis.
And yet, I don't know a single TAPVR mom who doesn't worry every time their child goes to the doctor. Or wonder if their lips look blue, or if it's just the lighting. I don't know any TAPVR moms who don't wonder, with every cold, what horrible thing could happen.
Again, technically, we shouldn't have to worry about any of this. But, we are moms, and dads, and we have watched our children fight for their lives, and we will never forget that. And it scars us, as much as it does them...if not more. Always, it is in the back of our mind, no matter how logical that may seem. It's just par for the course, being a TAPVR parent.
However, I feel like it sets us apart in the CHD world. We don't have to deal with multiple open heart surgeries (again if all goes well..TAPVR kids sometimes DO need multiple open heart surgeries), and we don't have to wonder every day, if today will be the last day we have with our child.
I feel like it kind of makes it hard to fit in, in this CHD world.
I have been in actual support groups, where the moms of the HLHSers (a VERY serious defect, where the child is essentially born with half a heart) in a sense feel better than they have it so much harder, so they deserve to be part of the group more. They deserve to have the heart walk teams, because they deal with so much more.
And they do deal with more! And I am SO thankful that we got TAPVR instead of HLHS.
However, it doesn't make our TAPVR road any less real. It doesn't mean we don't deal with feelings that are so real.
We hurt at seeing our babies hurt just as much as they do.
I see it all over the CHD community. I don't understand it.
I love my new support group here, I haven't felt this with them.
The thing is, we are all fighting for the same thing. We are all on the journey together. It shouldn't matter who has it worse off, because really, if you look hard enough you can always find someone worse off than you!
I think doctors often don't realize it either. We are often discharged from the hospital and just sort of left. No one ever reaches out to be sure the parents are ok. No one suggests support groups. No one tells us that it's ok that the feelings never go away.
Anyway, I'm rambling, and I really have no idea why I'm even sharing this. Us TAPVR parents know who we are, we have our own support groups for other TAPVR parents who understand where we are, we are ok.
It's just been on my mind lately.
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