Welcome to Living in Left Field, where living with chronic illness, raising three boys, having a child with Asperger's Syndrome, and raising children in general, means that I'm seldom on the same playing field as everyone else!

Monday, July 10, 2017

On Being "The Example"

I read a reposted tweet the other day that really struck a nerve with me.  The original poster tweeted that she, as a person with chronic illness, was tired of being the example for others of what they should be thankful for: i.e., she was their example of 'things could always be worse.' 

WOW.  Yep.  

After the month we've had with my own health, and things we're dealing with with the kids, and how sick and tired I am of hearing how wonderful and strong I am (I promise you, I just might throat punch the next person who tells me what a strong mom I am--excuse me?  Just because I'm raising my boys?  Three kids with special needs?  Get over it.), that repost just about broke me.  Okay, it did break me.  It was truly on point.  I'm tired of hearing people thank God their kid "isn't like that," after seeing a child on the spectrum, or thanking God they don't struggle with their health the way some people do.  I understand not everyone means it the way I take it, but I am tired of hearing it.  There but for the grace of God go I, you know? We could all have it worse, but why use someone else's life as your example of it?

That's not the kind of example my kids and I are here to set.  We're not here to make you grateful for what you have, or what you don't have.  I'm not here to qualify as the shining example of motherhood merely because my children have neurological and learning disorders.  There are times I want to break down and not be strong--but dammit, I'm a strong mother, so I can't, right?!?  My kids and I, we are who we are, and we muddle through.  We make the best of things, and do our best, because very honestly--being negative about it doesn't help.  It makes things worse.  Yes, there are times we get caught in a negative spin, but we work our way out of it.  Yes, there are times I'm completely overwhelmed, but I dig my way out. I begged for these children, and I love them dearly.  I will do everything in my power to make sure they get everything they need that will help them.  I want my children to grow up fighting.  And this is how God made us, so acceptance is key: There's a reason for this.

I'm dedicated to my kids just the same as you are.  If our situations were reversed, you would work just as hard, if not harder, for your kids, as I do mine.  Being the mom of kids with special needs doesn't guarantee me super powers, it doesn't automatically make me strong(er), and it doesn't make me any better than you.  

My kids are just like your kids.  Different, but the same.  Having a diagnosis or two doesn't make them inspirational or an example of anything, good or bad.  They're just regular kids.  

My rap sheet of autoimmune illnesses doesn't mean you should count your lucky stars you aren't like me.  It doesn't mean I want your sympathy or pity.  

The example we are here to set is for those coming along behind us.  The moms, the kids, and those with chronic illness like me--we are foraging the way for them.  We are setting the example that it is what is, but it isn't what it has to be.  Don't settle for anything less than a stellar life! THAT, my friends, is the example we are here to set!  When we are strong and inspirational, it is for the families and moms coming after us, who need the way paved for them.  The ones who need to see success, and who need to see that yes, it can be done. When we are strong and inspirational, it's for those parents and kids who need a reason to keep putting one foot in front of the other when all they want to do is give up.

And on the days I'm not so strong?  It's so those moms know they have a friend they can count on when they aren't so strong.  And it's so, should my own children raise children like themselves, they know they can come to me when they aren't feeling so strong, too. 

Wednesday, June 28, 2017

Immanuel

I've been struggling with this one for about two weeks.  I just can't quite get it right. Yes, I am being deliberately evasive, not for attention and pity (I don't want your pity, I want your prayers), but because I just want things confirmed first, and really, it's just hard for me to talk about right now.   I just need to talk about what I can talk about, get it out of my head, and leave it here, you know?  I've rewritten the title 349827 times, and finally settled on Hebrew for "God is with us," because I know, without a doubt, He is.  I tried doing research for my paragraph about those dealing with fear, not doubt, but my head is so clouded, I just really can't make words make sense.  I tried doing research to tackle the enemy at hand, and I can't make those words make sense, either.  I cry so much, my eyes are always red and my face is constantly puffy.  I need to vent and scream and rant that I'm not prepared for this. I want to wake up and find out it's been a horrible nightmare.  It's a weary, kind of grief feeling.  This is not who I am and I don't like it.  I just want to get my act together and keep it together.

Have you ever had a time when you've known without a doubt that God is in a situation, you've seen Him with your own eyes, felt the massive, powerful prayers of others surrounding you and your family--you know He's right here--but you just can't find the energy to pray yourself?  Your energy is concentrated most on keeping breathing, keeping your head above water, keeping one foot in front of the other, convincing everyone you're fine, because you are just so overwhelmed by the situation before you?

I'm sure you have, and possibly more than once.  Oh, dear one, I hope not. 

Motherhood can be overwhelming at times.  Everyday things aside, we can find ourselves battling the enemy in hand to hand combat for our children.  We can find ourselves facing diagnoses we aren't prepared for.  Sometimes we might even find ourselves facing those diagnoses in more than one child at a time.  Perhaps another child is in the midst of growing pains, as well--the one child who is supposed to be making your life easy!  Life is just swirling right around all around you, and you can't quite seem to get a grasp.  

And we have to handle it all--with grace, in high heels, while walking backwards, right?   

I've been blown away by God's presence recently, but I'm still emotionally drained.  I can barely function, and I'm scared.  I know we will handle whatever comes down the pike with God by our sides, but I'm scared for my boys and their futures.  I am reassured by a mentor who comforts me, saying this is normal, and okay.  There's a word I still can't form, even in my head.  I'm filled with so much fear, but leaning entirely on God, because there is no other direction to go.  There are many Christians who would doubt the strength of my faith, and even my faith itself, because of my fear.  I would like to point them to the bible, to the many people in it who still had fear, but did God's work anyway.  They had fear, not doubt.  There's a difference.  I do not doubt my Abba. (I actually spent some time last night attempting to parse out the difference between doubt and fear with a friend.  My brain is not up to par however, I really can't put it into words.)  God is in the friendships I have--the friendships HE has given me; He is in the devout, fervent prayers said by those friends as they hit their knees in the names of my children; He was in the two complete strangers He had waiting in the doctor's office lobby to comfort me when I broke down into sobs; He is in the doctors, therapists and mentors He has provided for my children; He is in the everyday things I find reminding me He has not, will not forsake my children.  I am constantly reminded that my children were His miracles before they became mine, and they are His children before they are mine.  God loves them with a love I cannot possibly fathom, no matter how much I love them.  


I've seen too much to doubt God.  I've seen too much to not have faith that will move mountains.  I've seen too much to not believe He will use this for His good.  I also know that what comes of this may not be immediate, it could be years from now, and it could even be a testimony we won't necessarily get to see.  What I do know is this:  As we tell our story, there is only One Name we proclaim.


Thursday, May 25, 2017

The Sanctity of Life

Seventeen years ago around this time, Shawn and I were preparing for a wedding we hadn't been planning on, because we found out we were expecting a child we hadn't been planning on, at least, not at that point in time.  Both of those life events were part of our 5-10 year plan, not something we were expecting at 23 years old.  We were poor, had no long-term plans or savings or well-earning jobs (and we were slightly stupid).

At 23, we were really weren't much older, and I won't even waiver at our maturity level, than Maddi Runkles is now at 18.

If you haven't heard, Maddi Runkles is the teenager making headlines because her Christian school won't allow her to walk with her graduating class.  She has a 4.4 GPA and had a place of honor in student leadership.  She's never been a problem student.  So, why isn't she being allowed to walk as she graduates?

Maddi is pregnant.  And, as her school states, she is being punished for being immoral--even though she was already suspended for two days, and stripped of her student leadership.  The school maintains they are not punishing Maddi for being pregnant, but when we get right down to it, isn't that what's really going on?

As Maddi has stated herself, if she had killed her child through abortion, the school would be none the wiser, she would be forgiven by Christ for her sins, and she would be walking across that stage to receive her diploma.  As it stands, she's asked forgiveness for the sin of premarital sex (immorality), and as our Father promises, she has received His forgiveness.  Yet, the school refuses to grant her the same.

Folks, this young girl has bravely chosen life.  This is a black and white issue--the school wants to make it one because of the code of conduct she signed, stating she would not engage in immoral behavior. That's not the reason though.  The black and white issue is choosing life over death; yes, Maddi sinned in sex, but sinning further in abortion would not have solved this.   Maddi is choosing to raise her child with the help of her parents, and will continue her education through a very well known Christian university's online program.  This young lady is a world changer!  And yet--she's still being punished!  Let's just paint a gigantic scarlet letter on her!

I'm in fear for the Christian community, and quite frankly, the future of Christianity if we continue down this road.  This is most certainly NOT a part of Christianity I want to be a part of, and I'm embarrassed and ashamed.  Yes, I said it--embarrassed and ashamed by my fellow Christians for their behavior.  This is not what I want to be known for!  No wonder we are looked upon as a crowd of hypocrites!  My prayer is this school realizes just how wrong they are, and they can open they hearts and their minds to some wisdom and discernment.  My prayer is they will beg forgiveness.  In a time when Maddi needs support and love, she is being met with the harsh and unforgiving wills of those adults she was told she could trust.

In this one incident alone, what are we teaching our children, and the rest of the world about our beliefs?  God help us, what are we teaching any current, and future pregnant teen girls about the sanctity not only of their babies' lives, but of their lives?

Just like Maddi, Shawn and I chose life for our child--for Noah.  In our family, we stand for life.  In our family, we stand for Maddi, and we stand for the life of her precious child, and the lives of the many precious children to come.

Tuesday, May 23, 2017

It Is What It Is, But It Isn't What It Has To Be

Recently, I've had several opportunities to talk about our early experiences with Noah and his diagnoses, how he's doing now, and our more recent experiences with Avery and now, with Ezra.  I often think God gives us these testimonies to give hope to other families.  It's one of the reasons I'm so obnoxious vocal.  I tried the victim card, and it really didn't suit us (I was talking with a friend just this morning about the one time--and only one time--our kids said, "But I'm autistic, I can't." ONE TIME! They both got the finger in the face lectures and everything! They never tried that excuse again!  Now, I do have another child who uses Every.  Single. Excuse. He. Can. Think. Of).  So here I am, displaying the mother-warrior-don't-give-up card instead. Yes, it's difficult some days (there are times you completely understand and embody the exact definition of the word 'weary')--but wow, the other end of the tunnel is Just.  So.  Incredibly.  Amazing.  When your child looks back and says, "I survived that--No, I didn't survive, I tackled it, I beat it, I let my freak flag fly and I'm a warrior. I'm exactly how God made me to be and I'm proud of it"--folks, that's just--WOW.

I will admit this did not come easy--as I said, I did try the victim card.  I begged God--why me, why them, why us?  Go pick on someone else's family!  I literally screamed at the injustice. I cried.  I wanted an easy life for my kids; it looked, and felt, as though everyone else's kids were having it so easy when my kids were just struggling.

I had a choice to make.  What kind of example did I want to set for my children, and what sort of life did I want to lead?  Did I want to blame God, or lean on Him?  Did I want to be angry at Him, or trust His plan for my--HIS--children?  Did I want to teach my children to be comfortable in who they've been created to be, and how they've been created, or did I want them to grow up thinking something was wrong with them?  Perhaps most importantly, did I want my boys growing up safe and secure in my love for them, or questioning why their mother didn't believe in them and didn't like them?

I also had to consider what I wanted to teach my children about facing adversity--do I want them to give up?  Do I want them to learn to keep going?  Or, do I want them to challenge adversity, and not view it as such at all?  It's just another day in left field, after all.

Obviously, I want them to challenge it, not view it as adversity at all, and keep going.  As I've said in previous posts, everyone has differences.  Our different just happens to have names.  Our different just happens to take a little (lot) more effort sometimes.  Some days, our different just needs a lot more cheerleading. And an early bedtime for everyone.  And a whole lot of humor.

There are still days I want to throw in the towel.  Only several times a day. And there are days my kids do, too.  But that's life for you.  It's not always sunshine and happiness.

I saw this quote from Michael J. Fox and I feel--I hope--as though it embodies what I'm trying to teach my kids about growing up different.

"Acceptance doesn't mean resignation.  It means understanding that something is what it is and there's going to be a way through it."

Wow.  Yes!  

Acceptance comes in all forms, most of them forms of moving forward and not giving up.  Acceptance tries one more time, and celebrates victories.  Acceptance is focus and (positive) response.  Acceptance tries to keep a sense of humor.  Acceptance says, "See ME, look at all the things I can do, look at me the person, not my diagnoses!"  Acceptance is living by cliches such as "Why fit in when you were born to stand out," and "Be yourself, everyone else is already taken." Resignation comes in defeat and victimization, it comes in being defined by your diagnoses, not by who you are.  Resignation comes in not moving forward, in giving up, and using your diagnoses as excuses.

Our biggest lesson in acceptance versus resignation has been that God is in control.  He has to be, because we can't do any of this on our own.  Without God, we truly are resigned to our own human-ness and our diagnoses.

I want my children to accept how God created them, because I know He has His purpose behind it.  I believe I've already seen that purpose several times in Noah.  I want them to be comfortable with who they are, and not worry about what others might think.  I want them to accept their diagnoses, but I do not want them to resign to their diagnoses.

These boys have been, and always will be, tremendous blessings to me.  They are gifts I am able to give back to the rest of the world.  In that turn, I want our family, our stories, to be the light that keeps others moving forward.



Bootstraps

I'm in the middle of writing a get up and go, hopefully-inspirational-"you can do it, special needs mamas"-post this week.  I've been feeling pretty good!  I've been uplifting others, sharing our adventures, and it's been good for the soul!

Then the latest paperwork for Ezra's speech therapy eligibility and what I'm hoping will be OT for sensory issues, and if necessary, early intervention preschool in the fall, arrived.  I sat down, ready to tackle it.  I am Mother Warrior, hear me roar!  I was ready to fill it out, pen in had, when it hit me like a load of bricks.  I saw that box checked "developmental delay," and I just folded.  I fell apart.  There are tears now as I type this.  

I know life isn't supposed to be easy--how else will our children learn anything?  But I really just want things to be well, alright--easy--for my kids.  When we found out we were finally pregnant with Ezra, we joked he was our Obi Wan--our last hope (to raise a neurotypical kid, haha).  After his heart defect scare and after his heart healed, we told him straight up, alrighty sweet boy--you've given us your scare, that's the only one you're allowed!

I knew this was coming, though.  I knew this was our reality before I even took him in for screening.  Our pediatrician and I have been watching him before his 1 year well check when I realized he wasn't 'on schedule' with a few things.  Because of Noah, I watched Avery, and now Ezra, like a hawk.  Perhaps I watch a little too closely (I've been told so more than once by more than one person), but that's how you catch things early.  So, having two kids ahead of Ezra with similar issues, it's possible I knew more than the experts.  I could say it ("There's a delay..."), I could talk about it ("I think we're looking at some delays with Ezra..."), I could describe it ("He had a few words at 12 months, but stopped using them, used vocalizations only until a few months ago, and has fewer than 15 at 25 mos, which is below the 100-150 words most two year olds have, and we're also seeing a lot of sensory issues...."), but seeing it all there in writing just knocked me to my knees.

You'd think I would be used to this by now, right?

That same afternoon, Noah and I were talking about the other blog post I have been writing.  I told him about it, and said, "You know kid, you really shine quite a light, I hope you know that."  He winked at me, and told me he's had a lot of help from a really great mom.  Yes, you know what happened next.  I burst into tears and asked him if he really thinks so.  "Mom, why else would God not only give you two more kids everyone else told you weren't possible, but two more kids with needs like mine?  Because He knows you're a great mom too, and He knew they would need a great mom to stick up for them."  This kid.

Thankfully, this delay is not something that defines who Ezra is, nor who he will be (something else I've learned from Noah).  It will not confine him to a certain sort of life or restrict which doors open for him, and which doors stay closed to him.  I would never allow that. I know what I'm doing so either get on board or get out of my way.  I will also continue to fight for whatever Ezra needs, for as long as he needs it.  Mother Warrior.  Roar.  I will celebrate every victory and push Ezra just as hard as I've pushed his brothers. In fact, that very morning we'd had a huge victory with the hair dryer!

I know Abba is in control.  I don't know His reason, but I know there has to be one for all of this.  I also know we caught this delay and these sensory issues early.  I'm grateful we live in a society where we have access to early intervention, and that Ezra is able to receive it.  As I've learned with Noah, and as I'm learning with Avery, I know everything will be okay with Ezra.  God is in control.


Monday, May 22, 2017

The Unsung Hero: The School Bus Driver

I put Avery on the school bus this year.  It was one of the most difficult decisions I've made as a mom, but between Ezra's naps and my health, standing in the pick up line at school was becoming less and less of an option.  Allowing Avery to ride the bus was much to his childhood delight, and most definitely to my maternal fright.  That first morning, he was so excited, he was at the bus stop twenty minutes early.  My second grader looked so small waving to me from that school bus window.

Before I made my decision, I stalked followed the bus around its route to watch the driver and her driving habits.  Was she worthy of my trust?  I prayed and prayed and prayed. We prayed at my mom's group.  I sent out prayer requests to friends and others I knew would pray with me.  I asked God for a driver who would care for my child the same way I do.  I asked God for a driver who would drive with the same care, caution and attention I drive with, with my children on board.  I asked God for a nice person with a sunny personality, a happy person who likes young children and knows what to expect from them, and knows they can change with the weather, with the holidays, and just day to day.

God answered those prayers, and more, with our beloved Miss Dottie.  One day I forgot it was an early dismissal, and was out running errands when she dropped Avery at home; she called the school from the bus, who then called me--and I couldn't have been more grateful, as I had planned to be out for at least another hour!  She smiles every time we see her.  She waves to Ezra, who LOVES that big yellow school bus!  She's cautious and careful.  She's taught the children how to wait for her to stop, how to board the bus, how to disembark and cross in from of her so she can see them.  Last month, with a bad storm approaching, she instructed the children on what to do so she could them all home quickly, safely and carefully before it hit (and they listened!).  She knows they get louder the higher the temperatures get and the closer the holidays get (no kidding, recently I heard the children over the diesel engine when she was still several stops away).

What I hope Miss Dottie knows the most though, is just how grateful we are for her, and how much she's blessed us (I may or may not have called the transportation department already to make sure we'll still have her next year).   Not only has she given my legs a break from standing in the pick up line, and given Ezra the chance for nice, long 2-3 hours naps, but most importantly, she has relieved my anxieties and fears.  I know Avery is safe, and I know he's happy with his neighborhood friends.

As the end of the school year approaches, everyone remembers to thank the teachers, the principals, the school nurses and the administration.  Please remember to thank your school bus driver, too!  Quite possibly, they have the most important job, getting our little ones (and big ones!), to and from school safely every day.


Wednesday, May 10, 2017

Calming Tea and Escalators

Avery had an appointment in the 'city' early yesterday morning, so I did something I seldom do... I declared a day of hooky.

Then I did something I never do.... We took off for the two story mall...  Without. The. Stroller.

I started out like this.
Oh, the littles were so excited!  And yes, it was fun--it really was.  We rode the escalator countless times--until Avery declared his fear conquered and himself a pro--but first we had to watch it and study it, because that's what we Furrs do.  We watched the timing of the steps, how people stepped on and off, if people walked up and down while they were on the moving steps, how they held the handrail.  Then, we were ready.  Oh, wait, not quite yet... Okay, yes!  And... We're off! I mean, on!  And twenty minutes later, we were escalator riding pros!  And we had to ride every single one we saw after that!  

We also rode all the open elevators.  Perhaps just as many times as we rode the escalators! It was fun to watch their little faces, watching the scenery as we rode up and down, their faces and hands glued to the open glass.

One thing I know we did more than both of those things combined was chase Ezra.  My goodness, that child can take off like a shot and RUN.  He did very well holding my hand, but really, who wants to be tied down all the time?  A few times I allowed him to roam free, and then he took liberties, of course, because he's two and that's what two year olds do.

I can't imagine what I must've looked like by the time we reached the final stores (like an idiot I tried to actually accomplish a little shopping).  I'm sure I was frazzled, and it's even possible my head was spinning (but I promise I was still having fun!)!  In the last store, the very nice clerk offered me a cup of tea to enjoy while I shopped.  "Would you like a cup of chamomile tea?  It's a lovely calming tea."  She seemed to really emphasize that it was lovely and calming, with a sympathetic hand on my shoulder.  Was it my children running circles around me?  My hair standing on end?  My exhausted face?  WHY DID I LOOK LIKE I NEED A CUP OF CALMING TEA??????

I ended the day like this.
Maybe just take the tea.  And the stroller.