Two Worlds

A lightbulb finally went off.

Well, maybe more like a flickering that I can't ignore any longer.

I am forever trying to "figure things out".  I think, all...the...time.  It never stops, my brain never turns off and covers a wide variety of topics.

If I can just understand why something is or when it started, or who all might be involved, what it means, how I can or can I make it better and does it really matter, and on and on and on....then I'm good.  I can move forward with my role in said "something".

Seems simple enough to me.

Except that there aren't always answers to those questions.  Not all of them at least. Sometimes something just is.  Maybe later I'll find out why, but maybe for now I don't need to know the answers. Or maybe there are no answers for me...at all.  It's just part of life that I have a role in, but not a part that I need to necessarily understand to the fullest extent.

I always prided myself on being one of those go with the flow kind of people.  I didn't need to control things, I was not a controlling person and I did not have a controlling attitude.

All these things I think about include how there is the slight possibility that I have a bit of a controlling side to my personality.  I honestly don't think it's huge, but it's effective enough to rattle me some days.  And if you talk to those who know me best, they may disagree with the size of the control chunk...so maybe just don't talk to them.

But still, control factor or not, one thing seems to continue to ring true in all of my thinking.

I feel like I live simultaneously in two worlds.  Two completely separate worlds that have trouble connecting, coinciding or even running parallel very smoothly most days.

I have one child who goes to a private school in North Carolina.  And my other child is in a special needs program in a public school in South Carolina.  Both of which are such a blessing.

I am trying my best to teach one child about relationships, embracing independence and not running from the hard stuff.  With the other child, I'm just trying to find smiles and contentment most days.

With my oldest I am trying to navigate playdates and which, if any, activities he might like that will help teach cooperation, coordination, teamwork, sharing, honesty, integrity, a competitive spirit and the value of being on the losing side.  With the youngest I'm trying to figure out ways that he can move independently and bear weight to help his hips not develop major problems later on, all while trying to make it something he enjoys....or at least doesn't make him cry, hold his breath and turn blue.

One needs to learn to read and write without being overcome with frustration and the other would love to just explore having actual food in his mouth.  He seriously gets so excited about taking his Prevacid.

One wants to have conversations that are oftentimes more engaging than those I have with adults and the other just wants to be outside...without the possibility of having to come back in, even though his life is such that even this is hard to accomplish consistently.

They are both so incredible in such different ways.  And they are brothers.  They share family and a home, yet it all seems so separate.  It is often about one or the other, not both.  When we try to make it about both, it just isn't.  Freddie gets to talk and tell us how he feels, but we can only guess what Logan thinks, so Freddie often calls the shots with what we are doing and seeing.  But then Logan requires so much attention to do what is necessary for him, that often Freddie must feel alone because when it's just the four of us it will likely take two of us to care for Logan.

Sure, I could be blowing all of this out of proportion, but day in and day out it sometimes does grow to be bigger than I feel like I'm equipped to handle effectively.

Then I land in the world of special needs as a reality more real than any you can imagine.  Everyone with children has struggles and challenges and I would never venture to say my life is harder than anyone else's.  But I can tell you without a doubt that there are things that parents of children with special needs or special medical conditions endure that make it very clear why we are not shown the whole picture at one time.

I have a friend who was not really a friend until our Logan was born.  Now we have mini therapy sessions.  Often on her porch with yummy coffee.  But, as we just learned, they can occur over text with cute little pictures and exclamation points and a deep understanding through just a few words.  She is one of the few that can understand this stuff.  This stuff that no matter how hard you try, if you don't live this life you just simply can't understand.  And that is more than ok.  It's not yours to understand.  All of our stuff is what makes us who we are.  Sidenote - Kelly Clarkson's Stronger (What Doesn't Kill You) is playing as I type this.  YES!

She and I talk about how hard it is and how tired we are.  And she's been doing it much longer than I have.  In so many ways it's like you never leave the baby stage.  Sure things change, but they just don't travel the same path.  I can't watch Logan follow in Freddie's footsteps, see how alike and how different they are, watch them interact and fight like brothers do.

Instead I'm trying to let Freddie live in this reality all while trying to shield him at least a little.  "Pretty cool" is not the description I would use when I hear my not quite 7 year old ask specific questions about Depakote and ask if I was on the phone with Logan's neurologist. Seven year olds don't typically us words like that.  But, it is our reality.

And with Logan, I honestly don't know how much he understands or what all he is feeling so we try our best to include him in everything we do as much as possible.  But that's even hard on him sometimes, no matter how much we all want it to happen.

When this journey with Logan began four years ago it seemed crazy and kinda hard.  New paperwork and people in our lives.  Specialists I never dreamed we would be seeing and medical information that was scary to say the least.

Now, it's so different.  So very different in so many ways.  It doesn't necessarily get easier, you just learn to deal with things as they come even if you don't like it.

I get mad that we have to have bed rails on the bed for Logan.  We have to transport those bed rails everywhere we go.  Have you ever packed bed rails?  Have you ever used bed rails for a extended period of time?  I would really like to talk to the people that make those.  I have a few tips for them.

Diapers.  He's almost 4 1/2 and we've almost outgrown the largest size pampers, which I can currently only find at Babies R Us in any decent size box, or online through Amazon.  But, oh joy, the state will pay for him to have diapers and wipes delivered to the house.  Have you ever seen these things?  They are huge and from what I understand, are not the highest rated in absorption.  And...he's still on the ketogenic diet so he wets diapers like crazy.  And because of the diet he also has to have special wipes.  So I have to make sure whatever we order through the list of state approved resources doesn't contain carbohydrates.  Or least very low levels.  Just so you know, that stuff isn't listed on any packages.

And because Logan is pretty severely delayed (which, by the way, is the worst description ever) it is likely he will be in diapers and need bed rails for the foreseeable future.

I am constantly adjusting these log sheets that we keep for Logan tracking seizures and what he eats, when he's sick, when he poops, what he weighs and current dosages for all of his meds.

We're always ordering something - new syringes, urine test strips, g-tube stuff, purple P chewy tubes, supplies for Logan, comfortable clothes that look nice too.

We're always analyzing his every move.  Does he need more calories?  Which is harder to change than it sounds.  What did his poop look like?  Did he sleep more than usual today?  What are those bumps?  Does his button have enough water in it so it doesn't accidentally get pulled out of his tummy?

Getting the kids hair cut feels like I am reinventing the wheel.

And the appointments for kids like Logan...let's just say we have a lot more than with Freddie.

I'm always giving someone the rundown of my life.  Where I'll be, what time Logan ate and got his meds. Every time I have a doctor's appointment, lunch meeting or school event I am attending or sometimes every phone call I make or need to make.  My life needs to be an open book when all I want is for it to be a little more private.

I may sound mad, but I'm really not.  Other than the bed rails.  It's just things you don't typically think about, but things parents of children with other than typical needs live with day in and day out.

A little story for you.

We recently took a quick trip to the beach.  Sounded so fun and we did have a good time.  But we stayed on the second floor of a condo.  Not a huge deal, we didn't think.  But after lugging all of our stuff up those stairs, for just a couple of days, it started to sink in.

One afternoon as Fred and Freddie headed out to the pool on their bikes, Logan and I planned to poop (him, not me), eat and maybe take a nap.  We thought we would just meet them a little later.  We pooped (him, not me) and ate and he decided against the nap. So, after a pity party of how hard it was going to be to get him to the pool on my own I started getting our stuff together.  I had a renewed wave of determination that I--could--do--this.  I got it all together and was ready to head out.  We have to give him stuff every two hours, so at this point I had to hustle to get him to the pool so he could get his water on time.

Then I realized.  I couldn't carry him, all the stuff and his stroller down and get it all loaded in the car at the same time.

Ok....so what are my options?  Turn the car on, air conditioner going full blast, get him loaded up and then run back up and grab the stuff.  Hmm...leaving my special needs child with seizures in a running car by himself?  Remove the special needs and seizures part and it's still a terrible idea.  So, I decided to leave him on the bed (with the bed rails from home), carry the monitor with me and hustle to get everything in the car.

We finally made it to the pool, got his water in him, he had a great time and we were back home in maybe an hour and a half because he was pooped.  He almost fell asleep on the way home.  And he most certainly wet his car seat through this swim diaper and board shorts.  I do everything in reverse and we're all in.

Then I can't seem to find my phone, which I carry around like a life line, so I check on him, leave the door cracked a little and head to the car with the monitor.  I check the car and no phone, but when I get back up the door isn't cracked anymore and I don't have a key.  Surely my phone is in the car and I just couldn't find it because there is no way I have locked myself out of the condo while Logan is in the condo, with no way to contact anyone.  I typically stay pretty calm, but at this point my heart is racing, I'm starting to sweat and my mind starts heading down the path of the worst that could happen.

While trying to breath slowly and calm myself down, I find Fred's key in the stroller that I had inadvertently picked up with our stuff.

I rush back in, realize all is well and the worst didn't even come close to happening.

And that all occurred (pool and all) in the course of about 3 or 4 hours.

That night we gave Diastat for a brutal seizure and we headed home the next day.

It doesn't mean that wouldn't have happened with any other child, it just feels so much bigger, harder, more intense, more involved and sometimes more exhausting with a child like Logan.

Then there are things that I take a little pride in, I'll be honest.

I know what the abbreviations BID, TID and PRN mean and can use them accurately in a sentence.

I have added to my resume administering meds and feedings through a g-tube and could change one out by myself if absolutely necessary.

I'm almost able to rattle off Logan's weight in kilos without the use of a calculator.

I'm not afraid of neurology, medications or seizures anymore.  I don't necessarily like any of them, but they do not rule us.  We have the upper hand at this point.

I am an expert on my son.  I seek out the expert advice of various professionals and use their knowledge and training to help me, but I know Logan.  For that matter, I know Freddie too.  And we are blessed to have doctors, therapists, teachers, caregivers, friends and family who are the most amazing team and village to help us every step of the way.  But Fred and I are still the ones in charge...and that feels good.

Life will always be a little different for us.  Take a little longer.  Require more stuff.  And only be fully understood by those in the same boat.

Logan doesn't eat dinner with us even though sometimes he can join us at the table.  Sounds like not a big deal, but it is. I really strive for all of us to be together at the table for dinner.  It makes a difference.

And forget about catching up with my sweet husband at the end of the day when all is quiet and peaceful in the house.  We might get to say goodnight to each other as we pass in the hallway.

Our bedtime routine looks atrocious.  It's not that bad for Freddie during the school year, but we can't bathe the boys together and we have to lay with both of them.  Don't judge...it is what it is at this point.  Everyone just needs to sleep.

We sometimes try and read to them both, but they don't necessarily go to bed at the same time, so that doesn't always work.

We don't get the recommended 7-8 hours of uninterrupted REM sleep a night.  I'm not even sure I enter REM sleep every night.  But for now, that's how it has to be.  Logan's seizures happen at any time day or night, and much more often when he's sleeping.

And then there are the mornings.  I can't scoop Logan up, give him his meds, throw him in the car with his breakfast and head off to take Freddie to school.  So someone has to be here by 6:30 each morning.

During the summer, I can't take both kids to the pool by myself or throw Logan in the car to have a fun day at the zoo.  It just doesn't work that way.

Believe me, I know I'm completely rambling and probably pretty hard to follow at this point.  But that's exactly how life feels sometimes.

As summer winds down and school gets ready to start back there are more things that I need to try and keep track of, add to my calendar and fit into each day all while helping these kids progress with things that are just harder for them than other kids.

It's just life.  I know that.  I get it.  I do.

But sometimes I just have to put it all out there.  For me as much as anyone.  I have to remember that we are living this right now, so that when I glance backward I'll know we made progress.  I'll know that we moved in the right direction and that we weren't just getting through life.  I'll know we are really trying to embrace life, do things even though it takes longer and requires more stuff.

I'll know that I worked hard to combine our two worlds and make them into one beautiful, complicated family story.

I'll know we went through the hard stuff to get to the good stuff and enjoyed a lot of good stuff along the way.