One Year Glennaversary

Jackson's one year Glennaversary is upon us.  April 12, 2013.  365 days have come and gone.  There are days I wonder if we made the right choice.  There are days I am certain we did, and days where I am certain we did not.

I could fill pages upon pages of my fears, my PTSD, my frustrations, my sadness.  But I could also fill pages upon pages of my gratitude, my never ending love, my heart that swells with pride.  And today just seems like one of those glass half full kinda days.

365 days ago, we handed Jackson over to Dr. Campbell, weighing in at just over 8 pounds.  His recovery should have been 7-10 days, but instead we took the scenic route, and it lasted 61 days.  And at the end of those 61 days, we left.  Alive.  Together.  Happy - and maybe slightly terrified at how to take care of him again.  But we left.

In those 365 days, Jackson has learned to sit up by himself for a few minutes.  He has learned how to stand while supporting himself against the couch.  He can sign close to 20 words.  He has stolen our hearts completely.  His therapists call and text with progress reports and gush to tell me how smart or strong or determined he is.  He gets blood draws and shots to keep him safe and he just keeps smiling.  He teaches us lessons every day in patience, kindness, and in living in the moment.  There are no promises that any of us will see another day.  I play with my kids and let the dishes sit on the counter.

The love and laughter that is shared between Mason and Jackson simply melts my heart.  Jackson loves to watch his brother.  They play cars and laugh and joke.  Jackson doesn't really speak, and yet the two of them share games and secrets.  Mason is one of the sweetest most compassionate children on the face of the planet because of his brother.  Siblings of special needs kids go through their own journeys, and while it hurts me that Mason has had to walk this path with us, deep down, I know it has given him amazing strength to face life challenges.

I have met so many amazing parents and their heart warriors.  Jackson has been fully accepted in an on line CHARGE community.  I have been given opportunities to provide a shoulder to a mom in need.  And, of course, my son is still with us.  Every day he gets a little stronger, learns a little something new, experiences a little something for the first time.

Lord knows I have plenty of hard days, where I come on  here and cry publicly and bear my soul to anyone who wants to read the words.  I struggle and I doubt and I get angry.  Today, I stand back in awe of my Samurai and give thanks and praise for the past 365, and pray that god will give me a million more.

Happy One Year Glennaversary my son.  Momma loves you to the moon and back.

Feeling Guilty for Feeling Blessed

Jackson's 2nd open heart surgery took place on Friday.  Dr. Campbell is his surgeon.  He told me how pleased he was and how well everything went.  Dr. Ing was the anesthesiologist.  He told me how well Jackson tolerated the anesthesia.  Dr. Adel is his cardiologist.  He told me how great everything went, reassured me that Jackson was fine.  And yet I still asked him if there was anything bad that no one was telling us.  And then I spent the next 3 days feeling guilty for having asked such a question.  But I realize that we are blessed with Jackson's heart.  Not for his heart defect, but for how well his surgeries have gone.  How well he has done.  How quickly he has recovered.  I look at so many of my heart momma friends and I see their struggles.  Days that turn into weeks that turn into months, spent in the hospital with your little one, when you have other children back home.  Wound vacs and cardiac caths.  Surgeries that don't go as well as planned.  Procedures that actually do damage to the heart in an attempt to fix it.  Little Liam, who paid the ultimate price with his life when his heart gave out.  And we seem to sail through.  I mean, yes, we have our issues from time to time.  But really, compared to some of them, it's nothing.  And I feel guilty for our good luck.  I am struggling to be a good friend to these heart momma's, when I can't really relate to them.  I haven't had these same set backs and tragedies.  Of course, I don't want to have them either.  I am obviously ok with Jackson's steady progress.  But I have such feelings of guilt too.  I hope that I can at least give them a safe place to cry or yell or say really horrible things.  I hope they know that while I don't truly understand, I do care and I do feel for them and I do pray for their little ones.

Friday Friday Friday

My mind is such a mess, I honestly don't even really know what to write or say.

I tried to think of the things I am thankful for.  I am thankful there is a new CICU wing, and that I don't have to go back to the place where I watched a little heart girl die just 3 days after Jackson was born.  Or where they told us Jackson had CHARGE and then wheeled him off for surgery.  But it didn't seem right that those are things I am thankful for.

So I tried to think of the things I am scared of.  I am scared of Jackson dying.  I am scared of his heart not being strong enough to re-start when they take him off the bypass machine.  I am scared of him having a heart attack or stroke from the surgery.  I am scared of his incision getting infected and us being in the hospital longer.  I am scared of seeing him in so much pain.

A good friend (and my boss) suggested that there are two possibilities that exist in the universe.  One possibility is that Jackson's surgery can go horribly wrong.  But, the other possibility is that it can go smoothly and without complication.  And she said that whichever possibility I spend my time and energy focusing on, is the one that will come true.  So, I guess it's time to pull up my big girl panties and stop worrying about the awful things that could happen.  And instead, imagine the good things.

Imagine that the anesthesiologist will keep Jackson safely intubated without too much medicine.
Imagine that Jackson's heart will be strong and will beat on its own when the time comes.
Imagine that we will be able to keep his pain under control and managed without the use of opiates.  Imagine that his chest will heal and his scar is something he will someday show off with pride.  Imagine that once his body starts to send more blood to the rest of his parts, his eating will improve.  Imagine that he will pass his swallow study and begin to eat by mouth.
Imagine Jackson safely back in our arms after surgery.
Imagine the good.
Imagine the positive.
Imagine success.
Imagine Jackson growing up and going to college and getting married and having kids of his own.

I think it's pretty obvious these are better things to focus on.  Better outcomes.  Better situations.  I am working on it, working on switching my thoughts from glass half empty over to glass half full.

And, I am so very thankful for our friends and our family who have rallied around us, again.  The meals you bring are so helpful.  The phone calls and text messages and emails with words of encouragement are amazing and keep us strong.  The chances to just sit and talk and cry are so healing.  The love and sacrifice of my parents is generous beyond words.  I am sometimes overwhelmed with the out puring of support.  My cup truly runeth over.

Mason's BIG Announcement

Estimated due date: October 18, 2012

Easter Weekend

Sadly, Mason was super sick (like 103+ temps) all weekend, so Easter wasn't quite as much fun, and there wasn't a big ham at our table. In fact, dinner that night was scrambled eggs and Cinnamon rolls. But, after 4 days of not eating anything, I knew he'd eat that. Next year we can have ham and all the fixings. He was happy with some cough medicine and a little side of cuddles with momma.

Random Cuteness

Just some random cuteness to keep you all entertained. Man, is he handsome, or what?!?! He is definitely at the age where he likes to copy what he sees us doing. I can't quite convince him that my shoes just aren't going to fit, no matter how hard he tries. Now, if he wants to practice shoveling, for next year, well then I say "son, go for it!"

Phoenix

We had a great time visiting Grandma Donna in Phoenix. The weather was pretty crappy - cool and rainy. I packed warm clothes for Mason, and insisted that Chris take long pants. Did I follow my own advice? Of course not! Froze my butt off!! But, aside from the icky weather, we all had a great time. It was actually one of the more quiet and relaxed visits we've ever had to Phoenix. It was a welcome change.

Headed to Phoenix to see Grandma Donna

We are headed to sunny Phoenix to see Grandma Donna on Wednesday. So much to get done between now and then. But, it's all worth it and we are excited to see her. Mason hasn't seen Grandma Donna since his birthday - which is just too long.

Can I Have Some Too, Dad?

Chris was running seriously late the other night, so Mason and I were on our own for dinner. So I made breakfast for dinner - Mason's favorite. He had 2 scrambled eggs, 2 pieces of french toast, a banana and a glass of juice. And when Chris finally did get home from work and I made him some dinner, Mason somehow talked his dad into sharing some of his. I hope it's a growth spurt, cause otherwise, we are in serious trouble when he's a teenager! Watch out grocery budget!

Balloons Balloons Balloons

Mason seems to be collecting balloons lately. The red one came from the guy at the car dealership while I was getting my oil changed. The orange one is from red robin where we had dinner the other night. He loves them!

Happy Seven Month Birthday Mason

How is it even possible for my baby boy to already be 7 months old?? That just doesn't seem right. The math must be off (and for those of you that know me and my math skills, that's not a far off conclusion!). We finally gave Mason a blanket at night a few weeks ago. His Grandma Joyce made him one that we figured had sufficient air holes if need be, so we have been putting it in his crib for naps and bed time. He loves it! He smiles and reaches out his arms to grab hold of it, and immediately puts it in his mouth. I swear, everything goes in that kids mouth. Except green beans, which he absolutely, positively, DID NOT LIKE!

Happy 7 Month Birthday my precious beautiful wonderful and amazing son. I love you!

Tank Top Weather

It's been warm and sunny here in Denver lately. Even Mason seems to have caught a case of spring fever.

Swim Lesson #2

Chris took lesson #2 with Mason last Sunday. They had a pretty good time. Mason seems like he's getting more and more comfortable with the water and floating and even kicks his feet some when he's on his tummy. The instructor calls it a frog kick. I think he's trying to jump, like if he were in his jumper. But, whatever it is, he has fun and that's all that matters.

Just Cause

And just a few cute photos to round off the evening. Mason and his dad have Swim Lesson #2 tomorrow. I get to sit back and watch and take photos of my boys splashing around.

Almost Ready to Roll Over

Every night while the bathtub is filling, I put Mason in his crib, facing the wrong direction. And I poke my head in and call his name, and he twists and turns and contorts himself so he can see me. And he smiles at me as if to say "look, mom, I've almost got it". Yes son, you're almost ready to roll over. And before I'm ready for it, you'll be walking and talking and telling me that you're going out for the night, with the guys, and you'll be home later.

New Toys

I played hookie from work on Thursday and Friday. Mason's day care was closed on Thursday, so I decided to take a long weekend and hang out with my son. I spent part of Saturday putting together some toys he had received at Christmas time. He's still too young for them, but, he enjoyed watching mom make them work.

Can you tell that he's well loved, and spoiled?!?

Carrots and Sweet Potoates

We've moved on from squash, which was Mason's first food, and one that he enjoyed, to carrots, that he wasn't so sure about, and now to sweet potatoes, which he really liked. Next come the green veggies, and then finally, the fruit. So far he has done really well with eating the veggies each night with his bowl of oatmeal. He opens up big and doesn't spit them back at me, so that's good. I am a little worried about peas and beans, but we'll see. Donna says that when Chris was little, green beans were his favorite. Not any more!!