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.
Showing posts with label 2014. Show all posts
Showing posts with label 2014. Show all posts
Saturday, April 12, 2014
Tuesday, February 25, 2014
Heart Ache
Last week we handed Jackson over and let them shove cameras down his throat, and a drill up his nose, all in an effort to gain some knowledge that would help him. Information the doctors could use to fix his troubles. Wisdom to understand why he throws up every morning. Pieces to the puzzle of why, 10 months post Glenn, he's still on oxygen. And what did we gain? We gained a vest that will shake our child. Wow. Seriously?!?!? I'm in a bit of a fowl mood about last week.
I'm an envious green headed monster. I have heart momma's with heart kids running circles around Jackson. They aren't on oxygen and their sats stay in the 80's. They are having their feeding tubes pulled. They are up and moving. Well meaning friends who ask if Jackson is walking yet are like a knife to my back. Their genuine questions sting like a thousand bees. I am tired and frustrated and burnt out and scared.
Adel wants to have a cath this spring.
I can sense another "big picture" talk coming. And now that Chris is back to work, I will likely face that conversation by myself. Fuck.
Jackson isn't a "thriving" Glenn, and deep down we all know it. Adel has been patient. We've all been patient. But at what point do we start asking those uncomfortable questions? I have searched for a post Fontan CHARGE kid. And I haven't found one. I've found a few CHARGE kids who made it through their Glenn, but aren't Fontan candidates. They are 4 and 5 and 6 years old, and are just sorta struggling to hold their own, much like Jackson.
It makes me wonder if the other CHARGE kids got heart (and maybe also lung) transplants? Adel has said that we might fight an up hill battle to get Jackson on a transplant list. And while I can understand that, is it fair to refuse to him a heart just because he's not in tip top shape? And please don't mis-understand me, I am not ready to give up on Jackson's heart and jump on the transplant band wagon just yet. Transplants are scary and come with their own list of issues and meds and worries. They aren't perfect. You trade one set of life long problems for another. But, I don't like the idea of it being outside his reach either.
What I do know is that pre Glenn, when his half a heart was doing a whole heart's job, he wasn't on diuretics. He wasn't on inhalers. He wasn't on heart meds. Yes was tired and he slept a lot. He was blue. His oxygen levels weren't fantastic, but he wasn't attached to an oxygen concentrator 24/7.
What I also know is that post Glenn, he's happier. He's more interactive. He lights up when Mason walks into the room. He has fight and spunk and spirit in him.
Do we have enough forward progress to keep going? Are we just torturing him (and us) by prolonging the inevitable - whatever that may be?
The doctors told us that being a single ventricle patient was a hard road. Add in his CHARGE and there are days it seems too daunting of a task to give to a sweet 16 month old boy. My heart aches for him. It aches with worry and fear that we're making the wrong choices. It aches from sleepless nights spent with feeding tubes. It aches from grief over the healthy son we were supposed to have. It aches with envy. It aches from feeling alone on this journey. It aches from frustration that I have no control, no say, no magic wand. It just plain aches.
I'm an envious green headed monster. I have heart momma's with heart kids running circles around Jackson. They aren't on oxygen and their sats stay in the 80's. They are having their feeding tubes pulled. They are up and moving. Well meaning friends who ask if Jackson is walking yet are like a knife to my back. Their genuine questions sting like a thousand bees. I am tired and frustrated and burnt out and scared.
Adel wants to have a cath this spring.
I can sense another "big picture" talk coming. And now that Chris is back to work, I will likely face that conversation by myself. Fuck.
Jackson isn't a "thriving" Glenn, and deep down we all know it. Adel has been patient. We've all been patient. But at what point do we start asking those uncomfortable questions? I have searched for a post Fontan CHARGE kid. And I haven't found one. I've found a few CHARGE kids who made it through their Glenn, but aren't Fontan candidates. They are 4 and 5 and 6 years old, and are just sorta struggling to hold their own, much like Jackson.
It makes me wonder if the other CHARGE kids got heart (and maybe also lung) transplants? Adel has said that we might fight an up hill battle to get Jackson on a transplant list. And while I can understand that, is it fair to refuse to him a heart just because he's not in tip top shape? And please don't mis-understand me, I am not ready to give up on Jackson's heart and jump on the transplant band wagon just yet. Transplants are scary and come with their own list of issues and meds and worries. They aren't perfect. You trade one set of life long problems for another. But, I don't like the idea of it being outside his reach either.
What I do know is that pre Glenn, when his half a heart was doing a whole heart's job, he wasn't on diuretics. He wasn't on inhalers. He wasn't on heart meds. Yes was tired and he slept a lot. He was blue. His oxygen levels weren't fantastic, but he wasn't attached to an oxygen concentrator 24/7.
What I also know is that post Glenn, he's happier. He's more interactive. He lights up when Mason walks into the room. He has fight and spunk and spirit in him.
Do we have enough forward progress to keep going? Are we just torturing him (and us) by prolonging the inevitable - whatever that may be?
The doctors told us that being a single ventricle patient was a hard road. Add in his CHARGE and there are days it seems too daunting of a task to give to a sweet 16 month old boy. My heart aches for him. It aches with worry and fear that we're making the wrong choices. It aches from sleepless nights spent with feeding tubes. It aches from grief over the healthy son we were supposed to have. It aches with envy. It aches from feeling alone on this journey. It aches from frustration that I have no control, no say, no magic wand. It just plain aches.
Wednesday, January 1, 2014
Phoenix, in photos
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