Never Give Up

Somewhere along the way I quit trying.  It all became just too much.  And I didn’t even realize it was happening.

I hate complaining.  I hate hearing people complain.  I’ve tried to teach my son not to compare himself to others, but to just be the best Freddie he can be.  And that’s been my focus for Logan as well.  I don’t want to have unrealistic expectations and be disappointed or drastically reduce his quality of life trying to meet goals that just may not fit him.

But somewhere along the way I began to compare myself, my life and our family to others.  And I did so in a way that began to slowly diminish my life in my own eyes.  

Let me explain.  I’ve always said and believed that everyone has their stuff. Yes life is hard, but someone always has it harder.  And while that may be true, looking at life only through that lens is unfair and potentially dangerous. At least for me.

We have it so good compared to others I know.  And yet we have it incredibly hard should I shift the focus of that comparison. 

But how do either of those truly help me?  It doesn’t.  Instead it makes me question the validity of my feelings and stops me from sharing my experiences with anyone. 

It somehow starts to ingrain in my soul that my life is of less importance than that of someone else’s.

I’m seeing that now because of a very lengthy conversation with my 11year old.  And hearing it through his words.  I didn’t even realize that’s what I was hearing until the playback in my mind.

Our pastor delivered the most incredible message this past Sunday.  I would love for you to check it out here.  As my sweet friend said, he was parked right in my parking spot with everything he said.  It was all about the mind and how everything is driven from what we allow through the gate of our thinking.  

And here’s how I’ve been thinking.  

I’ve been thinking that I’m getting it wrong and everyone else is getting it right.  

I’ve been thinking that if I focus on what are challenges for our family then I am simply giving in to feeling sorry for myself. 

I’ve been thinking that I am an inconvenience because we take up more time, more space and often more attention.  That the uncomfortable look on someone’s face because they have to alter their life is somehow my/our fault.

I’ve been thinking that gratitude has to include ignoring my actual feelings. 

I’ve been thinking exactly what evil wants me to think and it’s drowning out all the good God wants me to hear. 

Here’s the deal.  Life with a special needs child is hard and different and incredible and emotional. 

Life with a child who is growing and changing and learning and struggling is hard and incredible and emotional.  And when that child sees the bigger picture of the world, sees beyond himself - it is even harder.  

Mesh those two together and it’s not an emotional roller coaster.  

It’s an emotional theme park during a hurricane on the hottest day of the year packed shoulder to shoulder with screaming kids, half of whom are throwing up or passing out while the other half can’t get over the fact that it’s snowing the biggest flakes ever known to man while parents are trying to hurry everyone up because it’s almost closing time and the pink elephant has already begun to sing How Great Thou Art. 

It makes no...logical...sense.  NONE.

And then you have to leave the house and re-enter society.  Where around every corner you encounter a situation that tells you you’re different.  Your family is different.  You don’t really fit or belong here, but we welcome you and sort of feel sorry for you because you have it so hard.  As long as that hard doesn’t impede our lives in any way.  Or it can impede our lives as long as we are expecting it or have a plan for it.

But there’s no plan.  As hard as you plan, there’s no plan that will always fit. 

And before you tell me “That’s life” or “That’s being a parent”, it’s not.  It’s not just life as most people know it.  And it’s not just life as a parent.  Because when I’m with my typically developing son, it’s different. Not nearly as hard.  We can blend and adjust as needed.  

And when I’m with my non-typically developing son, it’s somewhat easier.  I can adhere a little more to a plan or at least affect fewer people if adjustments need to be made.

But, when we throw everyone or even one more person in the mix...all bets are off.  That’s if we even get to leave the house as a full family.  Too often half of us are home because of the non-typically developing part of the family.  Missing out on life that happens outside of these walls.

Part of the reason I’m sharing all of this publicly is for the countless families that live this life day in and day out.  It’s those people you know that you admire.  You are in awe of their strength...don’t know how they do it.  It warms your heart when you see them together as a family just enjoying life. 

And while all of those sentiments are appreciated more than you will ever know, I’m going to go out on a limb and say that they are likely some of the loneliest people you know.  Or if not, they have been through some incredibly lonely times when they couldn’t imagine facing another day. 

And by lonely I don’t even mean depressed.  I just mean they have reached a point - probably more than once - that they are beginning to fully realize that life isn’t going to truly get better.  It will change, but not in the way it does for most families.  

For example, I will always have to change my child’s diaper.  Always.  No matter where we are or what we’re doing.  And they don’t make changing tables in the ladies bathroom large enough for him at 8, much less as an adult.  And he doesn’t pee any less the older he gets.

I will also, likely have to give him every ounce of nutrition he gets through a plastic button in his tummy.  A button that we have to monitor for infection or inadvertent removal.  And this nutrition has to stay on schedule or it could screw up the entire day.  There’s no lazy day on the beach with this kid. 

Vacations are never the true definition of vacations anymore.  Remember when you couldn’t wait to go on vacation and not have to take the entire house including the kitchen sink?  And when you could finally enjoy sitting on the beach all day while the kids played?  Yea.  Not happening here. 

We have to battle those people who - knowingly or not - park over that little lined area beside a handicapped space and block me from getting Logan loaded back into the van after we come out of whatever establishment we have decided to brave for the day.  That’s especially fun on a rainy, super hot or super cold day.

There’s no calling a babysitter or heading out on a quick spur of the moment couples dinner with friends.  And forget any type of quick weekend getaway.

You know how you can sympathize with that new mother who isn’t getting any sleep at night?  You tell her it’s going to get better because you’ve been through it.  For so many families like ours sleepless nights are part of our lives.  It doesn’t go away.  We keep thinking that we can do it, but eventually that lack of sleep makes us not nice people. 

And we have to help our child poop - every day.  I can give you the play by play of that if you really want.

At the same time, we still wonder who they could have been while trying to celebrate who they are. 

The point is that day in and day out we battle these silent and unseen things that most families either never have to experience or they grow out of.  They reach a point where they are free of diaper bags, car seats and bathing their child every night.  And while I can celebrate that with one child I will forever experience it with another. 

I don’t mean to sound bitter or angry, but I also get tired of feeling invisible or insignificant because I can’t participate in life like most everyone around me. 

I still want to contribute to the world, to go to a job that I love, to travel.  I still love the idea of being spontaneous or having a girls weekend.  But it’s just not in the cards. 

And finding care that is competent, that you can trust and that will stick around?  There isn’t one family that I know that doesn’t constantly struggle with that as well. 

Bottom line, those families just deserve a shout out.  The divorce rate is high.  The depression rate is high.  And often the daily struggle - emotional, physical, mental - is unspoken. 

And that’s the non-typically developing child.  Many of us still have the typical stages of childhood that we’re trying our best to navigate with our other incredible children.

All the while trying not to let the special needs world completely overshadow the typical one.  

Not letting our typical children get lost in the seemingly never ending innocent demands of the non-typical ones.

Trying to use the challenges of one child to help positively shape and mold the character of the other. 

Trying to keep a positive perspective while acknowledging the real pain along the way.

Trying to remember that the world’s voice cannot be louder than the voice of truth that only comes from a strong belief that God is in control, loves us and has a plan better than we could ever imagine.

I quit offering my voice because I felt like what I was hearing was that my voice was not worthy of being shared.  And while I don’t truly think I was hearing that, that idea got past the gate of my mind.  And it became louder and louder and louder.  

We live in a world where if you’re not the best of the best or the worst of the worst, or if you fit into one of the smallest crowds then you don’t matter as much.

Our community voice has gotten softer while the world voice has gotten louder.

I’m here to tell our small little community of special needs families - I hear your.  Whether you’re coasting on easy street or never think you’ll get out of the trenches, you’re not alone. 

Keeping putting one foot in front of the other. 

Keeping showing up every single day.

Keep turning the volume up on the voices that say you can - loud enough that they drown out the voices that say you can’t.

And celebrate those little angels that God hand picked for you.  I believe with my whole heart they are the closest thing to heaven on earth we may ever know.