0 In Advocacy/ Brain Injury/ Medical Parent Life

Balancing the good and bad emotions

Our journeys are all different.
No two stories are the same.
They may be similar, but not the same.

I’ve been told countless times, mostly by trolls, that I’m a negative person. To just be grateful.

Well guess what, this journey is HARD. And yes, there is a lot of heartache, frustration, sadness, anger and so much more that comes with it.
There is also joy, gratitude, celebration, pride.

Some weeks lean more one way than the other. Some days it feels hard to focus on the positives because the hard stuff comes crashing in huge waves.

But I’m human. I’ll never get the perfect balance of sharing the good and not so good. There is a lot that doesn’t get shared, which means you’re seeing a small glimpse. Keep that in mind. When a struggle gets shared, it may not come with the 10 reasons of gratefulness. When a milestone gets shared, it may not come with all the tears that were shed to get there or over what else has been going on that day. A glimpse. That’s what you see.

My biggest reason for sharing this journey (beside personal journaling) is to help other families feel less alone and to help others get a glimpse of this kind of life to maybe gain some empathy for other humans. Making those connections helps me too, to feel less alone.

So much of society says “be happy, be positive” which yeah, it’s important, but that’s not all there is to life.
Us as human beings have emotions.
And they’re valid.
And it’s okay to struggle.

Remember that gratitude and suffering can exist at the same time.

So yeah, maybe sometimes I’m too negative. Aren’t we all.
Or maybe it’s that being REAL makes people uncomfortable.

Our journeys are all different.
People handle things differently, reach certain milestones at different times when it comes to how we feel and approach tough situations. What works for some, doesn’t for others.

So let’s be patient, kind, understanding, forgiving.

0 In CHD/ The Heart

Congenital Heart Defects

I didn’t know much about them until we didn’t have a choice to become an expert, because my child’s life depended on that knowledge. Up until then it was something I’d randomly see on social media but it didn’t affect us, until it did.

Suddenly it became our reality.
Open heart surgery.
Breathing tubes.
Echos.
Countless pokes, tests, appointments, therapy. feeding issues, oxygen, the constant worry.

We had no choice but to dive head first into this scary world. A world that seemed distant not long ago. It took the length of a single conversation to completely change the course of what we thought our child’s future would hold.

My child is 1:100
Think about that. CHD is more common than all childhood cancers combined yet research funding is 10x less.
It’s an internal battle that is daily, and life long. A battle most cannot see because a shirt covers scars. A battle that’s not always pretty.

Tomorrow, join us in wearing red to support Heart Disease. Let’s make it seen, make it known, let’s save lives.
Because not only will that help everyone already battling this, but also those to come, which could include someone you love, or you.

0 In Advocacy/ Parenting

Accessibility Issues

Can we talk about accessibility? Or lack there of?

I never realized how inaccessible this world is until I had a child who needs that accessibility, and will one day need it even more as he gains independence and won’t have me to give him the push he needs or simply carry him in.

Things that were once a slight inconvenience are now a barrier.
I’m seeing it everywhere, and it makes me sad.

It’s 2021.
The world is trying to say it’s accepting disability and equality.
Well, guess what.
A lot of it is talk.
You can be all for inclusion, equality, acceptance and all those great things that make you look like a caring person, but if you don’t actively seek out ways to make sure everyone actually has equal opportunity, it’s just talk and doesn’t help anyone.

Have you seen the photo where a group of kids is standing in front of a set of stairs and ramp? The focus was to clear the stairs first, as more kids could use those and only one child needed the ramp. BUT, if they clear the ramp not only can the child with a wheelchair use it, but every other child can too.

I also used to think that if there was a handicapped symbol at a building it meant it’s fully accessible. How neat. Except not. Ramps are often made too steep. Or there’s a step at the bottom? Very helpful. It may seem accessible to an outsider, but people actually needing these accommodations know it may very well not be.

For some places, accessibility stops right at the front door. When you can’t even get into the building. Or you can get in, but then can’t do much more. We went to an appointment that in no way allowed for us to bring Ethans medical stroller, so we had to carry him, and all his gear.

Other places may be accessible, but then lack the upkeep. Last week we went to an appointment and had a very difficult time getting up the ramp as there had been no attempt made to clear the snow.

Honestly, this discussion could go on forever. I’ve only touched on very few issues, and there are so many even I don’t know about.

Look around you.
Things may seem accessible, but are they really?
I’m asking you, if you are in any sort of position to make a change, please do.
Speak up.

0 In Brain Injury/ Grief and Brain Injury/ Medical Parent Life

Dear one year younger me

Dear one year younger me,
It gets better.
You will learn to cope, mostly, with this new journey you’ve been given.
You will make it through.
He will learn how to grab those toys, how to roll, laugh, scoot along on the floor. Guess what, one year from now he will find his legs and will love the walker.

It won’t be easy, I won’t lie.
But, you will make it.
You won’t always feel okay.
There will be days you will want to quit, where it feels like it’s too much, but just hold on because something beautiful is coming.
Things will still be tough in a year, again don’t want to lie, but you will be stronger and will have learned so much. It’s worth the fight. You will have seen so many beautiful things unfold.

Dear one year younger me,
I know you’re tired. That won’t really go away (just being honest here) but push through. Keep pushing. Keep advocating.

Your time at rehab will be rough, but so rewarding. When you go home, it will really hit you, but you’ll be alright. You will adapt, even tho it may not feel like it at first. Trust me.

There is unknown, but there is hope. Trying to find the right balance of what to feel is tricky, so give yourself grace. Be gentle with yourself, you’re trying your best.

You will be challenged, stretched, pushed what will feel like beyond your limits but you will also grow. You will change, and find a you you didn’t realize existed. And that, that is worth so much and so beautiful. You just won’t always see it.

Dear one year younger me,
One year from now you’ll be reading through memories thinking “I did it” knowing all to well how you felt in the moments you wrote those posts.

Which then, as in right now one year later, in 2021, will also serve as a reminder that you can continue to do this, for another year, and many after that. That you need to keep pushing through, celebrate everything you’ve battled through and cling onto hope, because look at how far you’ve all come.

And you did not come this far to only come this far.

0 In Brain Injury/ Grief and Brain Injury/ The Brain

Ambiguous Grief

Ambiguous Grief.
Is the grief experienced by the loss of a loved one who is still alive.
This is what we experience with Ethan every day.
We are beyond grateful that he is still here with us, that he is alive, but we also grieve who he used to be. Who he would be right now had his brain injury not happened.
It’s the would have, could have, should have beens.
While we don’t grief the loss of his life, we grieve the life he would be living right now. We would be living right now.
The walking, talking, playing.

It’s a confusing type of grieving, I find.
Because he’s here.
It’s a type of grief that comes with guilt, because I then feel like I should simply be grateful he’s alive, which I am.

But it creeps in, everywhere, all the time.
Whenever he learns something new, it pops its head out because “he’s done this before”.
Whenever we do anything as a family it pops up because “Ethan would and should be doing __ right now”

I look back at old photos and videos and miss THAT part of Ethan.
The sitting, nearly walking, starting to talk Ethan. The Ethan who had the coordination to blow his nose, clean his hands, chase after his brother, clap.

Ambiguous Grief is not talked about enough.
It’s something I didn’t hear about for MONTHS. And I heard it from another brain injury mom.
I remember feeling such relief. Almost happiness, that what I was feeling was actually something, known. Yet not known enough.
For so long I was left in this weird state, having absolutely no idea that it has a name.
That it’s a real thing.
That I’m not crazy or alone for feeling like I am.

It’s still so hard.
And confusing.
But it’s real.
And I’m scared it won’t ever go away.

So if you find yourself in this weird, lost, confusing place where you’re grieving what would and should have been, know that you’re not alone.

What you’re feeling is valid.
It’s real.
It’s hard.
But you’re not alone.
Don’t forget that.

0 In Advocacy/ Brain Injury/ The Brain

Dear Everybody

Dear everyone,
Just because we’ve had lots of admissions, tests/procedures and countless emergency room trips doesn’t mean it’s any easier.

No, we don’t “get used to it”, we just figure out how to cope, some days better than others. The 10th ambulance ride isn’t easier than the first.

Just because we’ve had lots of diagnosis’ doesn’t make the new one any less scary and heartbreaking. If anything each added one crushes us more because it’s yet another thing to worry about.

Yes, we may have JUST come home and now we’re back at the hospital so “what’s the big deal?” Not like we’ve settled in at home and we know the staff so it must be easier.
It IS a big deal, because we’re not at home.
We are separated from our spouses, our other children, our comfy beds.

It’s not easy just because we’ve done it lots. This isn’t soccer practice, knitting club or a pottery class.
It’s our child suffering, struggling while there isn’t a whole lot we can do.

Just because we’ve been there, done that, doesn’t mean we don’t need support.
Yes this may be our 20th admission, our (who even knows) emergency room trip, but we still need just as much support for this one as we did for the very first one because it’s still scary and heartbreaking and exhausting. Oh so exhausting.

I get it, checking in gets tiresome and maybe overwhelming. Keeping track of it all? Goodness, I don’t expect you to. But imagine living it.

We don’t need the perfect words. They don’t exist. You can’t fix this.
But we need support. We need to know we’re not walking this alone, even during the small admissions, small procedures, little diagnosis’, the every day grind. Because that grind is busy, and takes a lot out of us.

And no, we don’t expect everyone to be there all the time. That’s impossible, and we don’t have time for that either.
But be mindful of how you can help. Even a quick “thinking of you today” message can make a huge difference. It reminds us that we’re not walking this alone, because we can’t.

Just because this is “our normal” doesn’t mean it’s easy, at all.

Please don’t forget about us.
It doesn’t get easier.
We need you.
And thank you to those of you who are there. We love you.

Sincerely,
A very exhausted mom, and every other mom/dad who can relate.

0 In Nutrition/ Tube Feeding

G-Tube FAQ

I recently posted a button change video on Instagram and got lots of questions: and I honestly love questions like these. There is so much for people to learn, to help people to see that modifications to life like this are okay and still lets people live good, happy lives.

-Ethan is strictly tube fed. All of his medication, fluid, and food goes through the tube using an extension we connect to the Button.

-the second photo shows how the button looks once it’s placed. The button gets inserted, deflated, through the stoma – the hole the button goes through to get into the stomach – and then the balloon gets filled with the proper amount of water. The AMT MiniOne, which is the button brand we have, had a balloon shaped similar to an apple. This keeps the button nicely secured. The balloon is pliable so if it gets pulled on hard enough it can squeeze it’s way through the stoma, but overall it’s pretty secure.

-we have a G-Tube emergency kit which has a backup button, the supplies needed for a change, as well as catheters in smaller sizes in case the stoma starts to close and we can’t get the button back in. Inserting a catheter a bit smaller keeps the hole from closing more and gives us a chance to stretch it back open big enough to fit his button. Thankfully we haven’t had to do this yet.

-we don’t know how long he will need his feeding tube. We’ve done some feeding trials this summer and he’s not ready to start oral feedings. When he is ready, safe and coordinated enough it will still be quite the transition, but we will deal with that whenever it comes.

-Ethan currently gets fed a Real Food Blend Diet. We blend regular food in our Blentec Blender and he gets 3 meals and 1-2 snacks a day. His diet is much healthier than mine will ever be, I won’t lie. I love that blending it gives us full control of what goes into his little body. It’s a lot more work, but so much better for him. Any other questions? As always, feel free to ask

0 In Advocacy/ Brain Injury/ Parenting/ The Brain

How did I miss this truck coming right at us?

Sometimes, some days I feel fine. Maybe things will be ok (whatever that actually looks like), maybe I’m finding this weird place of acceptance of how life now looks.

And then it just kind of hits you out of nowhere. Except it’s not out of nowhere because it’s been there all along just hiding, waiting to creep back to the surface.
But I don’t really know why it comes out. Maybe its the exhaustion or another piece of hard news, but then I feel guilty. Because I feel like I should just be grateful about the fact that he is still here and we get to fight this fight. Because so many parents don’t get to fight this fight anymore. But then enters the fear and frustration and exhaustion and maybe guilt because I feel like I should’ve seen it coming but I didn’t.

It’s like, when you’re standing in the middle of the road and there’s a truck coming straight at you.
But you just don’t see it.
Until it hits you.
And then boom your life is changed forever and you’re left trying to sort out the pieces to a puzzle.
Except no one knows what the big picture looks like so you’re piecing together a puzzle having no idea what the heck it’s actually supposed to look like. And that’s just life, too. But with so much more intensity because things keep trying to smudge up the pieces.
And everybody tells you to just keep going, you’re doing wonderful, but you feel lost.

Oh, and now you’re supposed to somehow not panic whenever anything comes up. Despite you feeling like you missed this giant semi truck coming right at you before and you had absolutely no idea.

So how are you supposed to navigate something so intricate with almost no guidelines?

One day, one moment, one problem at a time I suppose.
But goodness does it get exhausting.
And some days are better than others.

But please don’t enter any cheesy Christian Cliches, because they don’t actually help.

0 In Ethan Strong/ Our Brain Injury Journey

Neuro/Seizure Update

We’ve had some pretty….crappy feeling? discussions with Neuro this week and the expectation will now be that given his injury and his seizure history with the injury, he will have seizures.
Our goal and expectation until now has always been to get full control, and that’s now shifted. They will make changes to meds if he starts consistently having the clonic-tonic (the shaking ones you always see on TV) or a significant increase in the ones he’s currently having. The hope is still as few as possible, or none, but there won’t be an assessment to see if we need to change things every time he has one.

If he’s sick or experiencing things that are known to lower his threshold, the goal will be to get him through that right there and then and then keep going with the plan as long as he comes back to his baseline. She said they may and will probably change their presentation (which we’ve seen already) and he will have highs and lows with his threshold and how often he’s having them. We’ll adjust meds with growth spurts but otherwise, the next step would be to add yet another medication which we don’t want unless we absolutely have to, as he’s already on so many and they each have their own side effects – and it may not even work.

So now we’re left in this crappy feeling place where we shift his baseline and expectations/realistic goals. He will have seizures. He’ll have good days, weeks, maybe months, and bad ones and unless things start to worsen significantly and/or it’s affecting his daily life too much, this is our reality and this is the treatment plan. I’m torn about it. I get it. He’s on so many meds, and the reality is, he had the stroke at birth, the encephalitis in December, and the genetic link. The odds aren’t in his favor. But this is my little kiddo. It breaks my heart every time seeing him struggle. Unfortunately, this reality is common for kids like him, but it sucks. There’s a couple of options we’re inquiring about but everything is a balancing act. How do I not give up hope that we may one day defeat this beast of this is the reality that’s in front of us right now?

0 In Brain Injury/ Ethan Strong/ Our Brain Injury Journey/ The Brain

Missing the way things should have been

ethan sitting at park

Today is one of those “missing the way things could have and should have been” days.He’s making some great progress, and we’re super grateful to get to watch him make that progress, don’t get me wrong, but things SHOULD be different.

Timothy picks up on it too. He quite often says he wishes Ethan could ______. That if Ethan didn’t have his brain injury he would be able to _______. That he wishes Ethan never had his brain injury so they could _________. Your babies aren’t supposed to step back in their milestones. Some of the things he could do effortlessly over a year ago now seem so far out of reach

He should be walking, talking, running, maybe even eating. We worked so hard to get to where we were, and he was doing beautifully. Crushing milestones. We will continue to work hard, to get back whatever we can. And he is doing beautiful, it just all looks so very different. In 1.5 months we’re going to hit the 1-year mark. As that time creeps closer, emotions run higher.

I wish there was a way I could go back and yell at myself, tell myself to watch out, that life is about to change forever. But I can’t, so here we are. And here I find myself, getting waves of could have been, should have been. And it sucks.