Special Needs Moms: Self Care Requires Self Knowledge

Happy New Year, everyone! You got through the holidays! Yay! They’re over! Just me?

Now we’ve got a new year, with a new start, and hopefully it’s the start of a good year.

Onward and upward, right?

We’ve talked before about how being a special needs mom is a job.

It’s not a vacation.

And it’s certainly not Holland.

It’s a job (don’t get me wrong, it’s a super rewarding job, and I love it, but it’s a lot of work, too).

And it’s oftentimes an exhausting job.

And everyone always goes on and on and on and on about self care for special needs moms, but what if you don’t even know what that looks like anymore? What if the thought of taking a long bath where you can be alone with your thoughts sounds horrifying? What if you can’t get out with friends on a regular basis? What if you’re so tired that nothing sounds fun or relaxing anymore?

If you don’t know who you are and what you need, self care is going to be so much harder and maybe even feel impossible.

Self care requires self knowledge!

If you want to build yourself back up, refill your own cup, you have to know what makes you tick, what gives you energy to keep you going.

*And don’t worry. This isn’t me leading up to selling you something. Some of the tools I suggest aren’t free, but I’m not selling them.

So, a few years back my husband was in a leadership program at his job and we had such good conversations as he learned more about himself and what made him tick.

We worked a bit to figure out me, too, but it was really more in contrast to my husband rather than any clear look at how I worked.

I started counseling. I was working through some of the trauma and stress and such of Evie’s first several years. I was making some progress.

Life felt calmer and more in control.

And then we had a simple overnight hospital stay. It shouldn’t have been that big of a deal, but my husband and I agreed it was one of the worst ones we’d had from a PTSD perspective.

And after that weekend, I couldn’t ignore a big problem anymore:

I loved my life, but I hated my daily life.

And I hate admitting that, but I would guess it’s probably a pretty common feeling for many people.

And my wonderful husband told me we needed to really invest some time in figuring ME out, what made ME tick, what I needed each day.

He’s quite a catch.

But it makes sense. And not just for special needs moms, but stay at home moms and working moms, and dads, and ya know…people. If you don’t know what you’re good at, if you don’t know what you need to be happy (because it sure as heck isn’t going to look just like everyone else), then how on earth are you going to enjoy your daily life?

Especially when you’re in a position where you can’t go find a different job.

*raises hand*

That’s where I’m at. And I don’t want a different job, either. I just wanted to figure out how to enjoy this job, this life, more on a daily basis.

So here’s the thing:

NO ONE is going to force you to figure that stuff out.

You don’t have a special needs mom manager.

You’re on your own.

Well, unless you read this blog.

I won’t be your manager, but I’ll be happy to share the tools I’ve used and the journey I’m on.

Because being a special needs mom is such a great job. It really is.

And I want you to love it.

And I want you to be good at it.

And I want you to figure out how to take care of yourself so you can keep going.

All in your own way.

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Managing Your Child’s Care Team

Alright, so we’ve now established that you are the CEO, but how does that really play out? What does that look like?

Managing Your Child's Care Team

Well, to be perfectly honest, it’s probably going to look different for everyone. Ideally, this post would come after the posts I’m planning on self care and discovery, but we don’t always have the luxury to get everything figured out before we have to just dive right into this lifestyle. It would be best for each of us to have the time and energy and resources to figure out who we are and where our strengths lie first, but best is usually unattainable.

So let’s strive for the practical instead.

If and when you can, take the time to figure yourself out a bit more (I’ll tackle some of that in upcoming posts and will link here when those are written. If I remember. Hopefully) and use that information about yourself to develop your role in managing your child’s care team down the road.

For now, just do what you can.

So let’s just throw all these tips into some kind of list form, shall we? I love lists. Especially nowadays when my brain has been fried by exhaustion, some PTSD, and probably age (memory loss starts this early, right?).

Here we go.

Your child’s care team are your consultants, not your bosses.

Here’s the thing: YOU are the only one trekking off to every single appointment and therapy session. YOU are the one talking to other parents in your community. YOU are the one devoting your time to researching your child’s condition. In the perfect world, all of your child’s doctors, therapists, teachers, etc. would all be talking to one another. They’d all be comparing notes and always be up to date on the latest research, but this is far from a perfect world.

So it’s going to be on you to see the big picture, to put all the pieces together, and decide whose advice you’re going to follow. Because sometimes one specialist wants this and another wants that. You’re the decision maker.

And this doesn’t mean you’re the expert in every field. The CEO of a company isn’t an expert in every field they’re directing, but they find team members they can trust in each of those areas. Do the same.

This really was the mindset that helped me gain the confidence to direct my daughter’s care rather than being pulled and pushed and tugged and bullied into doing what each specialist wanted.

I deeply value the opinions of the experts we turn to. I wouldn’t keep seeking their opinions if I didn’t, but I always remind myself that I’m still the one in charge.

It gives me the confidence to ask questions.

It gives me the confidence to say no.

Remember that you are a contributing member of the team.

Do you need a medical degree to be valuable to the team? Of course not. You are around your child the most. You know them the best. So, your input, your observations, even that gut instinct you have are valuable. They’re important information that shouldn’t be easily dismissed by doctors, nurses, therapists, teachers, whoever.

Don’t let anyone stay on your team that disregards what you bring to the table.

I always remind myself that I’m not just thinking outside of the box, I’m not even IN the box. I have no preconceived notions of what is possible or impossible. I can ask questions, push for answers, and not simply accept solutions because they’re standard procedure. I bring a fresh perspective and you do, too.

Don’t ever think you can’t contribute because you don’t have the right letters after your name.

Find the best (or those willing to listen to the best).

Don’t be afraid to look for the best specialists for your child. Maybe that’s someone with more experience or maybe it’s someone who knows their limitations or maybe it’s someone who is willing to hunt down the best research and specialists for advice.

Don’t be afraid to get second (or third or fourth) opinions. This is so standard and if a specialist is offended, you probably don’t want their ego on your child’s care team, anyway.

Remember that this is your job.

Dress the part. Act the part.

Especially when you are meeting a potential member of your child’s team for the first time, try to look and act more professionally. Once a relationship is established, it’s usually okay to cut yourself some slack, but those first meetings are important.

And dressing a bit more professionally will hopefully give you some extra confidence as you interact with specialists, too.

Earn their respect and make them earn yours.

Each of these specialists has likely seen their share of bad parents. They have no idea which category you fit into yet, so give them a chance to get to know you. Don’t expect their trust or respect right off the bat and make sure they know that goes both ways.

Insist they explain themselves and answer your questions. You don’t need to let them boss you around.

This isn’t about you.

You’re not here to make friends. You’re here to get your child what they need.

Find team members who will fight for your child.

This one is so very important.

When it comes down to it, YOU will not be able to make things happen. To those in authority, quite often, you are a nobody. And sometimes you’re worse than a nobody: you’re just a biased and desperate parent.

So, you need doctors, nurses, therapists, and teachers who KNOW your child, TRUST you, and have the ability and authority to get your child the care needed. We’ve had very vital times where it was the relationships we’d developed with our daughter’s care team that saved her, where her doctors fought for treatments that she needed because they knew our daughter and us.


There ya go. Six…*counting*…seven. Seven tips.

This won’t be easy. It certainly wasn’t for me. I had to remind myself of my role with every new specialist, though now it’s become much more natural.

But how you implement these tips isn’t going to look the same as everyone else. We all have different personality types and areas we feel more confident. The point of this is to change your mindset. Change how you see yourself in these interactions.

And never forget that a good CEO values the members of their team and knows their own limitations. You’re not looking to bulldoze into every appointment, bossing people around.

You’re looking to build professional relationships, give and earn respect, and push everyone on the team to do the very best they can for your child.

You’re not a dictator.

But you’re not a nobody.

You’re the CEO and you are gathering the best consultants you can find to give your child the best life they can have.

Good luck!

Managing Your Child's Care Team

You’re the CEO: Taking Charge of Your Special Needs Parenting Story

I mentioned in my Welcome to Your New Job post, that you are now the CEO of a small business known as: Your Kid.

Maybe it’s Your Kid, Inc. or Your Kid Corp. Whatever. You’re the CEO.

special needs parenting

And I meant it.

Yes, you’re also Mom (or maybe you’re Dad. I’m too tired to make this all inclusive, so just mentally swap out Mom for Dad if that applies to you).

You don’t stop being Mom just because you’re also CEO, but there’s a lot to manage with a special needs child beyond the normal scope of being the mom.

And yes, I know some of these things are handled in regular mom territory as well. I’m a regular mom, too.

This approach has helped me with parenting both of my girls.

It’s helped me advocate for both of them, support both of them, be bold for both of them.

Because when you’re the CEO, you’re the decision maker. You’re the one to be convinced. You’re the one calling the shots.

It also means you’re in charge.

Which…well, pros and cons to that, isn’t there?

And you get to do it without any kind of pay increase!

And you’ll likely have to do everyone else’s jobs at times, too! While they still get paid for it!

Ok, bitter rant over.

Bitter rant over for now.

I make no guarantees for later.

So you’re the CEO and it’s going to be your job to manage all the various departments.

special needs moms

But please please please remember that you don’t have to do it all at once!

You’re going to have periods where different aspects will require more of your time and energy. Tackle those!

And there will be times when you’re drowning, when you’re mentally and emotionally spent.

Just rest.

Just survive.

Tackle what you can tackle when you can tackle it!

If you look at any of these and just feel totally overwhelmed, walk away. That’s okay. Bookmark it. Come back when you’re at a better place.

I’m over seven years in now and I’m still working to figure things out, to find what works for us, to get a handle on it all. And there’s a lot of times where only the bare minimum gets managed while everything else gets shoved to the back burner for another day.

Take your time. Remember this is a marathon. A marathon with bears. A sleuth of bears.

Because we all know that becoming and being a special needs mom is an emotional experience, but it’s also a steep learning curve on the logistical side of things. Hopefully these posts will provide a bit of help with that.

Okay. So, I want to dive into all of these with their own blog posts and I’m hoping that keeps things a bit more manageable. I’ll add links here for each as we go along.

Consultant Management

This will be my starting point simply because if you read NOTHING else, I want you to read this. This has long been my way to bring confidence into my interactions with various professionals. When I can remember that I am the CEO and they are my consultants, I can manage everyone’s expertise and recommendations much more easily.

Managing Your Child’s Care Team

Human Resources

This will probably be the longest section, especially as we dive into self care and development, but I also want to address family and friend issues as well as maintaining relationships with those people who are helping you and your child on a regular basis.

Finance

We’re just going to dip a bit into insurances, how to figure out what your state offers for help, dealing with billing offices, and the like.

Research

Oh my, there are so many things to research when you have a special needs child. You’ll need to learn all you can about their diagnoses, medical issues, developmental issues, educational issues, and on and on. So we’ll probably just cover the basics of HOW to research, where to look for information, and how to utilize what you learn.

Public Relations

You are the one presenting your child to the world and how you do that matters. There’s so many aspects to this, but it’s important to remember that the world around you will be looking to you for cues on how to treat your child. Lead them down the right paths!

Administration

Ah, the paperwork. This comes at you from every angle and can be so intensely overwhelming. I’d say it’s one of my most hated aspects of special needs parenting…and life. I really hate paperwork. A lot. BUT it’s important to stay somewhat organized and on top of everything. Hopefully, I can gather tips from moms I know on what works for them to provide some ideas.

IT

With a special needs child, it’s likely your life is a bit more tech intense. And you don’t need to be afraid of that. Technology can provide your child with so many wonderful opportunities to learn and play and communicate. And it can make your life so much easier in many ways, too, so we’ll go over some tips and tricks and suggestions on that side of things.

Legal

With this ‘department,’ I mostly want to go over the basics of setting up a will when you have a special needs child as well as finding help when your child’s needs aren’t being met or their rights are being violated. And for that I will need to do some research. Which is why it’s last. Because ugh, I really don’t want to dive into that stuff, but for you I will do my best.

So there you have it. Obviously, this is going to take a while. We’ve got a lot of ground to cover and hopefully my life stays crisis-free long enough for me to get through all of it.

But at the end, maybe there will be this nice little grouping of posts to help offer some resources on how to grow and develop yourself as a special needs mom as well as manage all the other things that go along with it.

Because this really can be a good life. It can be a life that offers variety and challenges and growth.

It can be a life that you’re excited to live, even as you’re struggling to live it, too.

You have your own story.

But you’re going to need to take charge of this for yourself. You’re going to need to figure out how to make it all work for you and your family.

Because best case scenario? This is a lifelong job.

So make it a good one.

special needs parenting

Welcome to Your New Job

So…you’re a special needs parent.

Maybe you just found out. Maybe you are finally coming to terms with it. Maybe you are just coming out of a fog of exhaustion and hospital stays and trauma. Maybe you signed up for it by adopting a child with known issues. Maybe you had a child involved in an accident or get sick.

However you got here, you’re here, and it’s not a vacation.

You have a new job.

You’re a special needs parent.

special needs mom

And it is a job. A hard one.

A good one.

But you can’t just phone it in. Your child needs you.

Desperately.

You’re now the CEO of a small business known as: Your Kid.

And you’re in charge of everything.

Finances, Human Resources, Consultant Management, Marketing, Research, Administration.

It’s on you.

And goodness, isn’t that overwhelming?

It is. You can say it. It’s super duper overwhelming.

And you’re not going to get a handle on it all at once.

Not even close.

But you need to treat this like a job. Even if you have another job. Even if you have other kids. Even if you’re tired.

Even if.

Even if.

So what does that mean?

That means you step up to the plate.

That means you work your hardest to figure out what your kid needs and get it for them.

That means you figure out how to be GOOD at this job.

And how you’re good at this job isn’t going to look the same as how someone else is good at this job.

It won’t.

You are unique.

Your child is unique.

Your situation is unique.

But you have strengths to bring to the table, both for your child’s care and for contributing to the special needs/disability community as a whole.

We need one another.

Our kids need us.

Own it.

Welcome to your new job.

You’re a special needs parent.

special needs mom

 

Exhaustion: Leveling Up

Let’s talk about exhaustion, shall we?

And not regular exhaustion, but Medical Mama Exhaustion.

This isn’t to bash anyone else or to downplay other people’s experiences. I’m writing about my experiences. You’re more than welcome to write about yours.

special needs mom

See, I’ve done the regular exhaustion. My first daughter wasn’t fond of sleeping. I remember that blur.

But I had NO idea how exhausted I could actually get until I became a special needs mom.

When our daughter first came home at two months old, she thought nights went from 3pm to 3am. Yeah. Fun. And I couldn’t do the old ‘sleep when the baby sleeps’ thing because she still needed tube feedings even if she were sleeping. And she still needed trach suctioning. And she still would kick her legs and set off her alarms.

And I still tried to do ALL THE THINGS during the day! Look at me! I can handle EVERYTHING!

Yeaaaaaah, I stopped waking up to her alarms within a month or two.

And fortunately they were false alarms and fortunately my husband heard them.

But that’s a dangerous level of exhaustion when you have a medically fragile infant.

Eventually we cut out the tube feedings we were doing at night and slowly shifted her towards a more normal night schedule.

I began to accept I couldn’t do ALL THE THINGS and still be an effective night nurse, but for the next…oh…three years? Yeah, it would have been about 3 ½ years, I would get up with her anywhere from 10-15 times a night.

special needs parenting

And it wasn’t the type of waking that I had done with our older daughter, that groggy assessment of what type of crying it was and grabbing her to nurse back to sleep.

No, this was the “I don’t know if that alarm is real or false” or “I need to wake up enough to get a teeny tiny suction catheter into a slightly less teeny tiny trach” type of waking up.

At 3 ½ years old, Evie’s pulmonologist opted to put her on CPAP via a ventilator (you can’t do CPAP on a trach with just a regular CPAP machine) to help deal with her aspirating (blowing air upward from her trach would keep her saliva and such out of her lungs).

At first, it was terrible as it stirred up all the junk in her lungs from years of aspirating. She coughed so much and I was up even more for several weeks.

But then, the clouds parted and the sun started shining and birds were singing. There was probably even a rainbow or two, maybe some ethereal singing, and I’m not even kidding, I contemplated covering her vent in heart stickers and writing it a few love sonnets.

*brushes aside a tear*

I love that vent.

Now, unfortunately that was paired with all sorts of other medical issues going on, so I wasn’t really catching up on a sleep just yet, but Evie’s lungs got so much healthier and eventually we got to maybe just a 2-3 wake ups each night.

It was heaven.

We had some setbacks, like when she started breathing more out of her mouth and nose (yay!) but that meant her vent couldn’t read her breathing and alarmed about SEVENTY times a night (boo!!!).

We got it resolved after several weeks with the help of her home care nurse (I was so exhausted, I couldn’t even register the problem or figure out what to do about it).

I started sleeping, really sleeping, and it was…well, it was actually terrible.

See, you get used to chronic exhaustion. You don’t. But you do. You get used to the tightness in your chest and the fog in your head and you don’t have a choice but to just get on with life.

But then you start sleeping.

And your body goes “ohmyWORD, I’m soooooo tired. I’m so sleeeeeeeepy. I don’t think you should keep your eyes open today.” It was miserable. I have never felt as sleepy as I did after I started sleeping again.

It was a solid two weeks of that, but then things improved dramatically.

I wasn’t pumping myself up on a caffeine all morning trying to get moving and then dealing with the massive anxiety that would hit early afternoon. My body didn’t ache like it had for the past how many years.

Since then, my sleep has continued to improve, though now I’ve noticed that if we have a bad night or several (or a full week. Thanks to whoever passed this cold onto us), I don’t bounce back easily. I don’t have any reserves built up yet and even one bad night can take me a solid week to recover from (I’m hoping the fog clears by Christmas from this little stint).

All this to say:

Medical moms are EXHAUSTED. We’re massively exhausted. Because it’s not just the sleeplessness.

It’s the anxiety.
It’s the worrying.
It’s the role of caretaker.
It’s the doctor appointments.
It’s the research.
It’s the hospital stays.
It’s the PTSD.
It’s the nightmares.
It’s the grieving.
It’s supporting friends as they grieve.
It’s trying to be a mom to other kids.
It’s the endless pressure to never ever ever mess up even a tiny little bit.

Many of us have only had a handful of restful nights in several YEARS.

Most of us are in pure survival mode.

So guess what?

Our houses might not be the cleanest.

Our conversation skills are probably pretty terrible.

That filter that keeps you from saying stuff that maybe you shouldn’t say? It doesn’t work all that well for us anymore.

We’re probably swinging between a cold robot who has to suck it up and do what needs to be done to keep our kid alive or an emotional trainwreck who hasn’t yet processed years and years of trauma.

We’re unlikely to be a good option if you’re seeking sympathy for typical parenting woes. It’s not that those aren’t legitimate concerns or struggles. It’s that we struggle to not be jealous of those problems.

We probably aren’t going to have the energy to deal with too much nonsense.

(Oh, the mom you know has nursing at night so she has no excuse? Yeah, because those nurses totally show up every night and they never just call in sick at the last minute or maybe just don’t show up at all. And those moms totally never have to step in and stay awake all night at the drop of a hat. And that rest when the nurse is there is so completely restful as they worry about their child and worry the nurse is staying awake and worry about someone being in their house.)

What it all comes down to, though, is this:

We’re exhausted.

Really exhausted.

And we’re struggling.

And we need you to be gracious and patient with us.

And if you can’t do that, that’s okay, too.

As long as you show yourself to the door.

Because we’re too tired to point you in the right direction.

*yawn*

Is it bedtime yet?

No?

Coffee, please.

special needs mom

Her Story is Not My Story

Okay, so this has been one of the biggest struggles of coming back to write again.
Evie’s story is NOT my story.

It’s hers.

And while, of course, her story has greatly impacted how my story has gone, it’s still not my story.

When she was little, when she was struggling so badly, we wanted to share what was going on.

I don’t think there was anything wrong with that.

We wanted your support and prayers and encouragement. We needed them.

But now, things are (mostly) calmer and I’m trying to figure out how to navigate these new waters.

 

But I still want to share my story, even if it’s not her story.

Because she’s changed me. She shifted the whole course of our lives. She forced us to really whittle life down to its bare minimum of priorities.

 

Parenting, in general, changes you. It’s inevitable. It’s a marathon of figuring it all out.
But parenting a medically complex child*…wow. It feels a lot less subtle.

It’s a marathon still, but it’s like a marathon of sprints with you chasing after a bear that’s chasing your child (and if it’s my kid, that child is probably laughing about it and doing everything possible to make your life harder because it doesn’t matter how many extra attachments your kid has, they’re still a kid and kids, man, they love to just be difficult sometimes).

 

But yeah, there’s a bear. Actually lots of bears. A whole…herd? *googling* Wow. It’s a sloth or sleuth of bears. That’s…interesting. Why do I feel like that makes the whole analogy even better? Let’s just use sleuth because that’s just kind of fantastic, isn’t it?

 

So yeah, a sleuth of bears (honestly, though, who comes up with these things?).
And you can’t stop.

You can’t rest.

You can’t just take a moment, because if you do…

 

And that’s hard.

It’s a lot of pressure for a long time.

Don’t miss something. Don’t forget. Don’t lose focus. Don’t mess up.

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And it doesn’t ever really stop.

The bears slow their pace, the sleuth (good gracious) might thin a bit, some of the bears hopefully gone.

 

But are they? Are they really gone?

Even when the only bears still around seem to be mostly tamed, mostly controlled, there’s that sickening sense that you’re being watched from the bushes, that another bear could leap out at any moment and start the wild pace all over again.

 

And that’s my story.

Evie’s story? Hopefully she’ll be able to tell more of it as she gets older. Hopefully she can help me share our collective stories together.

But I can share my side.

The frantic marathon to keep her with us because our life wouldn’t be the same without her. She’s worth any amount of exhaustion and bear fighting.

She’s worth all of it.

And really, fighting that sleuth of bears (I took the time to google, so I’m using it as much as possible) has forced me to become a bear, too.

A Mama Bear (but just one, though I have had to become a sleuth, too. Oh man, this really couldn’t have turned out better if I had planned it.)

 

But becoming a Mama Bear? That’s my story.

Special Needs Parenting

*Like I said, this is my story and that’s the kind of special needs parenting I have experience with.

It’s Been a While

Two and a half years.

Wow.

Sorry about that.

Sort of.

Not really.

I mean, sorry I disappeared on everyone for so long, but I needed it.

Four years ago, we were still in the midst of trying to figure out Evie’s bowel issues.

Three years ago, we were prepping for her Wish Trip as she continued to improve after we removed the discovered bowel defect earlier in the year.

Two years ago, we were crashing hard, no longer able to coast off the relief of Evie doing well, our PTSD demanding to be dealt with, and our bodies struggling to recover from such prolonged stress.

One year ago, we felt like we were finally starting to come out of the fog, only to have a hospitalization that sent us mentally and emotionally back again.

And writing here was just too hard.

Because I didn’t want to process everything we’d gone through. It was hard enough to do that in counseling, let alone baring it to the world.

But we’re making progress. It’s slow and we have a lot of setbacks, but the calm stretches out a bit longer in between.

And Evie is doing so amazingly well that she’s almost unrecognizable from that teeny tiny struggling little toddler.

She’s SEVEN now! She’s HUGE! She’s talking and is starting to read! She’s in gymnastics! It’s honestly just completely unbelievable how far she’s come.

Schooling.jpg

But she’s older now and I’m not sure how much to share anymore.

But I still want to write here.

We’ve learned a lot over the years and we’re still learning more all the time. We don’t have it all figured out, but we can share some of the lessons learned, some of the tricks accumulated, some of the perspectives acquired.

I don’t know how often I’ll write. I don’t have a plan of what I’ll even write about.

Stuff, I guess.

Special needs parenting stuff.

Maybe some regular parenting stuff.

Maybe odd and weird topics that I get slightly obsessive about. Because I do that. Often.

So we’ll see where this goes.

Could be fun.

Grateful for the Catastrophic

Two years ago, we were in the hospital as Evie struggled with an intussusception (where the bowel telescopes inside itself and gets stuck). It was a hellish time full of fear and frustration and trauma that led to months of progressively worse issues.

And I’m grateful for it.IMG_20140717_095700969

Not in the happy way, but in the “it all worked out in the end even though it was horrible” way.

Because the bowel defect was already there causing problems. It limited the amount of food she could take in, it kept her malnourished by not letting her body absorb nutrients properly, and it messed with her heart rhythm. Eventually those problems would have required more extreme intervention. And all of our solutions would have been worthless. No one ever suspected a bowel defect was the real source of all of those problems.

But then it turned catastrophic. It demanded it be found. It demanded it be fixed.

And fortunately, we found it and we fixed it.

But we wouldn’t have if it hadn’t tried to take her life. We would have continued on, managing issues that were becoming increasingly unmanageable. We would have watched Evie stay small and prayed that the heart issues wouldn’t worsen.

But that didn’t happen. Not because it got better, but because it got significantly worse.

Same with her breathing. If she would have kept crawling along with getting each breath, we likely wouldn’t have trached. We would have thought she was doing so well and managed in other ways. But we didn’t. Her breathing issues turned catastrophic and a trach became an absolute necessity.

So we got to see just how great she really could do. How beautiful her eyes are when they’re not filled with fear that the next breath won’t come.

And catastrophic is what landed us at Cincinnati Children’s Hospital. If the scarring in her airway had only been slight, hadn’t required the best doctors in the world, we never would have traveled 10 hours away for her care. But she did and we went and it made all the difference in the world for her.

But we’ve always come out on the other side of each catastrophe. We’ve been able to do what needed to be done IN TIME. And that’s my continued prayer. That each catastrophe will give us enough time. Evie’s bowel defect gave us nearly 10 months of going from bad to worse. It threatened her life slowly enough for us to test and test and test and finally do surgery to find and fix it.

We’re still recovering, though. Even though we made it through and even though Evie is doing amazingly well, those two things don’t negate the horrors we witnessed or the 10 months of feeling helpless to save our child. That level of stress for so long is simply not something you can just bounce back from. Having her still here doesn’t erase the late night conversations discussing the perceived inevitability of losing our little girl. It doesn’t erase having to spend 10 months shutting down our emotions and distancing ourselves from our own child because we knew if we broke down, we couldn’t do what needed to be done to save her. It doesn’t erase the fact that we bought a puppy in the middle of it because we wanted our older daughter to have that comfort if she lost her sister. It doesn’t take away the flashbacks or the panic attacks or the deep realization that we could have lost her so easily. That we still could lose her. That we’ll never be safe.

We’re grateful for those catastrophes, we are, but it’ll take some time for us to process it all, to breathe again. We were all deeply wounded and only now are we started to peel back the hastily placed bandages to assess the damage and figure out how to heal. We’ll get there.

And that all sounds so doom and gloom and we’re NOT feeling that way. We’re thoroughly enjoying this new phase of getting out together as a family and doing so many normal things. I think that will go a long way towards healing and potentially preparing for the next catastrophe.

Hopefully it’s a slow brewing one again.

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Evie’s Wish Trip: Universal Studios Part Two

Yep, I dropped the ball on finishing up Evie’s Wish Trip posts.  That’s life. But anyway, we headed back to Universal Studios and Islands of Adventure on Friday, our last day at the parks. The parks were definitely crazier than on Wednesday because the Harry Potter Celebration was going on. The crowds made for VERY interesting people watching, though. People had some extremely elaborate costumes! I wish I had taken more pictures of THAT!

We hit up the Dr. Seuss stuff first since we didn’t go there on Wednesday. We started with The Cat in the Hat ride, but it was in the dark and jerked around and Evie didn’t like it. But she spotted the carousel afterwards and rode that a bunch of times. She also enjoyed the High in the Sky Trolley Ride and meeting the Dr. Seuss characters.

Universal Studios8We headed up towards the Harry Potter stuff to see what was going on, but grabbed some kabobs first which were VERY tasty.  The crowds definitely thickened as we got up there and I was very grateful for our special access to skip the long lines. We wanted to eat over at the Leaky Cauldron for lunch, though, so we took the Hogwarts Express over to Diagon Alley. The restaurant wasn’t too crowded yet and the food was very good.  Ty and I each took turns taking Aleyna on the Gringott’s ride again and she enjoyed it a lot more this time.  We walked down through Universal Studios and Ty and Aleyna tried out the Despicable Me ride to see if it was something Evie would like. The both agreed she wouldn’t like it so we moved on.

Universal Studios9At this point, we started wondering where on earth we could find Dora the Explorer and friends. We’d seen her in the parade on Wednesday, but nowhere else. Suddenly we heard music and saw her float out in the street doing a little performance! Evie was SO excited! One of the staff members saw us watching and when the little show was done, grabbed us and put us right at the front of the lines to get pictures with all the characters. It was so amazing for Evie. Dora signed ‘I love you’ which got big smiles from Evie and then she pointed out that SHE had a backpack just like Evie! Pretty special.

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These were the special moments with characters that made this trip so wonderful. They were all just wonderful. Universal Studios11Evie and Aleyna also got some special attention from the lovely ladies dressed as flowers and they were so incredibly sweet.

Universal Studios12Next we swung over to the Woody Woodpecker ride that Evie liked so much on Wednesday. Oh my. She loved it!

I posted this video before, but it’s just so fun to watch! We wandered back up to the Hogwarts Express to ride back to Islands of Adventure. And here’s where Ty and I officially earned our Parents of the Year Award. I give you Exhibits A-D:

Universal Studios14Yep. Aleyna was TERRIFIED (Evie was sitting in her stroller just out of frame, completely uninterested) and as you can see, I was the picture of motherly concern and sympathy. It was genuinely scary, though. He made scary sounds and lunged at her. I didn’t really want to get very close either!

After thoroughly traumatizing our daughter, we wandered down to the Marvel Comics area. We ran into these amazing guys on stilts right outside that area and they were just the best. They had us laughing so hard the whole time and both girls adored them!

Universal Studios13Evie then started asking for the ‘train’ again, though, so we then walked back over to Universal Studios to ride the Woody Woodpecker ride some more. I think we went on it 6 or 8 times just over and over with Evie giggling away.  Everyone was getting tired then so we caught the end of the parade and then headed back to Give Kids the World.

We got dinner and while we were eating, an entire group of ballerinas came over to the table to invite the girls to their show over in the castle. My two little dancers quickly finished eating so they could go to the show. Because of how scheduling at the village went and the fact that most families were still at the parks, the girls got a private show and plenty of attention afterwards.

GKTW Photos10The ballerinas eventually had to head home, so we popped over to the Princesses and Pirates Party and it was BY FAR the best party of the week. All of the volunteers completely committed to their various characters. The mermaids, princesses, pirates, and knights were just phenomenal.

The knights and pirates who froze when Aleyna would use her freezing powers on them.

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The mermaids who made fishy faces with the girls.

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The princesses who danced and twirled with Evie and made her feel so special.

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We laughed so hard and had so much fun. We also learned that we should watch out for Aleyna. Upon learning that the knights were after the pirates, she immediately sided with the pirates and helped them escape. She’s trouble, that one.

We partied quite a ways into the night, but then finally headed back to our villa where we ordered pizza and stayed up way too late until Evie crashed for the night. And then the rest of us crashed.

P1020081And that was our last day at the parks! I’ll try to do a quick little post about our last day there just hanging out at the Give Kids the World for the day. I love that place.

Evie’s Wish Trip: Hollywood Studios

Hollywood Studios was the one park where we felt we needed to get there as early as possible. Aleyna really wanted to do the Jedi Training they have for kids, but sign up is first come first serve. We headed to the line first thing and got her signed up and then went over for her to ride Star Tours. Evie was still waking up a bit, so she wasn’t keen on doing anything quite yet. From there we went to the Frozen show. Evie was a bit overwhelmed, but she peeked up at everyone. Unfortunately, they had some smoke effects and, being in the front row, we were suddenly surrounded by smoke. We took Evie off the side, but then THAT side had smoke when Elsa appeared, so we went back to the middle. And then everywhere had smoke for the big finale, so I just rushed her out. I have no idea if it was dangerous for her, but that’s not something I want to risk. On the way out, I ran into someone who works in Safety and shared my concerns. He assured me they would pass that on. That’s what I love about Disney. They just want to do everything possible to make it a great experience for everyone.  After that, we walked over to Muppets 3D. Evie was NOT a fan even though she generally likes the Muppets, so I ducked out a bit early from that with her.

Hollywood Studios5Since The Muppets wasn’t exactly a hit, we wanted to do something that we knew Evie would love. Buzz and Woody for the win! Oh man, this girl has the best expressions EVER.

Hollywood Studios1Aleyna was supposed to have the Jedi training next, but because of the rain, it was canceled. She did get a personal meet and greet with Darth Vader, though, which was exciting for her!  I’m so proud we’ve passed on our love of Star Wars to her.

Hollywood Studios6Evie and I walked over to the Disney Junior show and waited for Ty and Aleyna to catch up with us again. One of the Cast Members spotted us and pulled us over to meet Doc McStuffins before the show, though! How neat! Both girls LOVE watching her show, especially since it’s doctor stuff that they’re so familiar with. We went into the show next and Evie LOVED this one. This one of the few that I had her watch on YouTube before going and with how well it went, I wish I had shown her EVERY show to prepare her. Afterwards we ran over to meet Sofia the First who is a favorite of both girls, too.

Hollywood Studios7We ran through the rain to Voyage of the Little Mermaid next which I have NO pictures of, but both girls enjoyed it. Since the Star Wars Launch Bay was right there, we popped in there to see if we could meet some characters. The line was a bit longer than we could handle with it being already WAY past lunch time, but the wonderful Cast Members again grabbed us and took us right to the front of the line. We got to meet both Chewbacca and Darth Vader. 1) I love tall people/wookies/sith lords and 2) I am such a nerd.  Darth Vader was so fun with his stern warnings that if we join the Empire and betray them, we would regret it.  Ty worked VERY hard to keep a straight face!

Hollywood Studios3Fun side story: Later in the week, we met a really neat volunteer at Give Kids the World and chatted with her for a while. We gave her a thank you card before we left and said goodbye. Later, we ran into her again and she said that her best friend has one of our cards, too! Her friend works with Darth Vader at Hollywood Studios! She showed us her Instagram post about it where she commented how much she loves her job and how much that simple thank you card meant to her. THAT is precisely WHY we did them. I was just so touched.

We went into the ABC Commissary to grab some food from there and then thought we’d let Aleyna hit some of the thrill rides. Ty and Aleyna went on Rock’n’Roller Coaster first and then she and I went. This was when I realized I can never trust Aleyna on anything. Ha! I asked her if the ride went upside down since I had my phone in my pocket. She said she wasn’t sure and couldn’t remember, but she didn’t think it did. LIAR! I spent the entire ride digging my elbow into my hip trying to keep my phone in my pocket as we went upside down repeatedly! When we got off, I asked her why she didn’t tell me! “Well, I wanted you to be surprised!!!!” Gaaaahhhhh!!!!

The rain really picked up at this point, so we ducked under an awning and chatted with one of the photographers who grabbed some pictures of the girls. It seemed like it was probably time to head out, but Aleyna REALLY wanted to ride Tower of Terror first, so I sent her and Ty off to do that. Amazing that she hated Haunted Mansion, but LOVED Tower of Terror! Fortunately, the rain let up a bit again and Evie wanted to jump in the puddles some more. She quickly discovered that the manholes held the most water and was quickly soaked, but loving it. I may have begged Aleyna to ride Rock’n’Roller Coaster again at that point, but this time WITHOUT my phone! So much more fun that time! The rain started up again, though, and we ended up running out to the van in a complete downpour. We were all soaked!

Hollywood Studios4Back at Give Kids the World, we grabbed dinner fairly early in the evening. Since there weren’t many other families there yet, we rounded up as many of the volunteers as we could and took some group photos with them. Such amazing people who give of their time so freely. The Christmas party was that night, too, so the girls FINALLY got to meet Santa! Since Christmas falls in the middle of sickness season, we’ve never risked a trip to meet Santa. It was amazing to get to do that at Give Kids the World. Both girls each got to choose a present as well, though Evie trying to manipulate her way into getting two gifts. Stinker. We got everyone showered and ready for bed and let Evie watch a show to calm down. Within a few minutes she was out cold. Sweet girl. She had such a great time meeting characters, seeing shows, and jumping in puddles.

GKTW Photos9Again, such a good day. We all just had so much fun both at Hollywood Studios and Give Kids the World!