Some Days

 

Yesterday was a particularly difficult day- special needs-wise. I try not to “vent” or complain too much on Facebook, but there were several times I was tempted to jump on and let the world know and possibly get a little sympathy.

Because some days, I hate autism.

Some days, I scream it out loud.

Ironically, yesterday I happened upon an old TV show, the doctor adamant that “autistics” were intelligent and teachable and not “retarded”.

I turned it off, because it pained me to watch – not just because of the archaic terminology – but wondering about the fact my son has both cognitive delays from Down syndrome and aggressive behaviors I’ve always blamed on autism. Where in the world does that leave us?

Some days I am confused.

Some days I think too much.

Some days I wish he didn’t have both.

Some days I simply don’t know what to do.

Some days I let him get away with too much, using the excuse that he doesn’t understand, because I often don’t know what he does and doesn’t.

Some days I resort to letting him have his way in order to save myself from physical harm.

Some days I sometimes get weary.

Some days I’m just not fast enough to get away and “block” him.

Some days I just don’t feel like doing it all.

Some days I want to scream, “This is so hard!!!” but I don’t want to. Because then all those who think a child like mine shouldn’t be born, or isn’t as worthy as typical children, might have a reason to believe it.

Some days I feel horribly guilty for complaining, because I see on my news feed a little darling with Down syndrome whose parents must say goodbye because of heart defect like my son’s and am so grateful for him.

Some days I don’t want to let anyone know about those ugly parts because he is such a good-natured and loving boy.

Most days.

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I have been blessed with and entrusted with much.

Some days I must make myself count all joy and be thankful while in the trenches.

My trenches include teenagers.

Some days they are hard.

Some days, I miss baby and toddler-hood when hurts were little like their squishy bodies I that I could scoop up and hug the hurt away.

And as rocky as these years can be, no one suggests we don’t have children because they one day will be hormonal, emotional and both independent and relying on you all at the same time.

Some days, homeschooling an active nine year-old boy frustrates me into a mom-fit because he would rather do a zillion other things than sit and do math.

But no one suggested I abort him because he was perfect and healthy. Not like my baby seen as damaged and defective by those who will never know him.

Some days, this angers me.

Most days.

Every single day.

Some days, I have to cry out to God for physical and emotional strength. Out loud.

Some days are harder than others.

Just like for everyone.

But then, last night…

As he laid in bed, ready for sleep, that precious little soul who had angered me so earlier pulled my head to his and would not let go.

And all the hard of the day left.

I remembered it no more. Like our Father who remembers it no more when we come as little children, even like those who can’t speak and simply love Him and ask for forgiveness in the only way we know how.

Some days I would live over a thousand times for that one moment.

Some days I need to tell the world that no matter the cost, the price is worth it.

Like today…

Love Never Fails

Love is patient, love is kind. It does not envy, it does not boast, it is not proud.  It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.”

Valentine’s Day- a day of full of red hearts and chubby cupids, chocolate and flowers, cards and sappy sentiments. A day set aside to celebrate love.

When my husband and I were dating, I planned a pull-out-all-the-stops Valentine’s Day celebration, only to have him called in to work at the last minute. Left alone with my candles and chocolate, a dinner to pack in the fridge, I cried and mourned the by-myself night ahead of me.

That fairy-tale night. That date circled with a heart on the calendar that shouted to me that I must do something to show this guy I was smitten.

We plan the big wedding, we buy the breath-taking dress, we walk the aisle, and we throw the party.

Life happens. Kids come. Sometimes some are born with extreme needs. Businesses close. Finances become shaky. Tempers flare and frustrations mount.

The daily little foxes that spoil the vines and threaten to crack that very foundation poured years ago before a minister on a rainy Saturday.

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And somewhere down the line, love can become no longer patient and sometimes a bit unkind.

As years pass, familiarity and assurance of unconditional love can make kindness dwindle; its reserves poured on strangers and acquaintances and used up.

Yet in the midst of the daily grind, amongst the frustrated and frantic, I find true love.

Not expected flowers and candy on a day. Not mushy-gushy, but love in action.

Love is the sound of my husband give my special-needs son a shower before school and hearing him say, “I love you…”

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Because love is patient.

Love is his taking him to school so I don’t have to get out on a cold morning.

Because love is kind.

Love is working long hours to grow a business to provide for our family. Love is me not envying those whose husbands work steady hours, who go on regular date nights and take yearly vacations, but instead being thankful for what he does and why he does it.

Love is finding joy in the everyday moments.

Love is eating chips and guacamole in the kitchen instead of dinner out in a quiet restaurant.

It does not envy.

Love is buying new tires and putting gas in my van. Love is calling every night on the way home from work to ask if I need anything from the store without ever being asked or expecting thanks.

It does not boast.

Love is, in many years of marriage, not ever demanding that dinner be on the table, never asking what I did all day or proclaim that the house is a mess. Instead, love tells me that he could never do what I do.

It does not dishonor others.

Love is a daddy starting his baby girl’s car on a cold morning before she goes to work.

It is not self-seeking.

Love is not getting upset when I banged up our cars, got speeding tickets, ran over a mailbox, and even when I hit him backing out of our driveway.

It is not easily-angered.

Love is not pointing out my many short-comings and failures, but encouraging me to do what God has called me to.

It keeps no record of wrongs.

Love is staying together though circumstances that should have ripped us apart.

Love believes God for greater things than what we can see, but only He can do.

Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

Some days love must be sought on purpose. Because tempers flare and some days, people irritate.

But most days, I simply listen.

And I hear love in the sound of daddy-wrestling and brother-chasing, daughter-laughing and angel-seer giggling.

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I hear “I love you’s” and read texts signed with hearts and it makes my own full.

I feel hugs and pucker kisses, small hands in mine and heads on my chest and I drink in all that they are.

I see all around me the evidence of those I love and remember that love is patient when I wish they would put their things away.

I thank God that by His grace that I have those who create messes and fill my days. I thank Him that they love me and He loves me.

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I thank Him for love that always protects, hopes, and perseveres.

True love demonstrated and poured out on the cross – a red unlike any valentine and a love none can ever replicate.

Today I celebrate love, not because I have to, but because I get to. Because of Him and what He gave me. For what He gives me every day.

Love never fails.

 

 

 

 

 

 

 

 

Christmas Lights

Yesterday lights on my tree went out. We thought a plug came loose  – although we all know this could never happen since my kids and dog are so calm and never throw things or hit the tree.  I woke up thinking about how to do this.  I may have actually dreamed about it.

Therefore, today, I will take everything off and re-do my tree if necessary. Even though I need to shop and do a zillion other things, the tree is a priority.

Why? Needles will be everywhere and I will be sap-sticky and aggravated. Why I am I slightly obsessed (although after last night, Jerry would argue that the obsession is more than slight) over a tree? After all, it’s just a tree.

Is it because reminds me of Christmases growing up? Is it because for years when Jerry and I had no money to give each other gifts, the tree WAS my gift?  Is it all for the kids? Why is it that I, in all my frugalness and practicality, must have my real tree instead of buying an artificial one time and using it every year when that makes so much more sense?

I think the tree feels like home.

A real tree looks uneven and has holes. When the lights are off, the branches look bunched up and the wires show. The ornaments look a little dull.

But when the lights are on, it becomes transformed. The wires fade into the green and the ornaments are illuminated. The imperfections are covered and it draws us to sit and enjoy it. It becomes beautiful and inviting.

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Kind of like us. We are real and messy, imperfect and full of holes. When Jesus comes to live in us, we take on His light and become light. We are still imperfect and bunched-up but His light covers us and illuminates through us.

The Light of the World Himself asks us to be Him to the world. His light is inviting. His light is comforting.

His light is home.

 

 

Sorry I’m Late…

I used to be an on-time person. Not particularly early, (unlike those who show up annoyingly early before things are ready and we all know who those people are), but at least arriving at the proper hour. However, lately, (no pun intended), I have just been, well – late.

I stay up late, my kids stay up late, sleep late (don’t judge- they are homeschooled and that means we can), my husband works late. And I run late.

I’ve become that friend who gets there last. The one who calls to say, “Sorry, but I’m running a little late…”

I’m even late on the newest technology.  We still own VCR’s, we still have one TV that isn’t a flat screen and I just got an iPhone 5.  But apparently the 6 is way better. Or so I hear.  So please, just let me have my fun and enjoy my thumb sensor unlocky- thingy, panorama pictures and be happy for a little while.

I will say that one thing I don’t do late is sleep. Late, that is. Well, sometimes I don’t sleep either, but I digress.

This year, (every year), I am late decorating for Christmas. At least according to Instagram and Facebook where I see all my friends’ tinseled trees and evergreen-ed mantels.

But I’m working on it. Last night was the Neely-Annual-Picking-Out-the-Tree-and-Family-Dinner-Out. We got started late. Remember the hard-working husband who works late?

After proper tree-stand adjusting, branch-cutting and the boy’s box-tossing- from -attic antics (if any of my Christmas ornaments are broken….), it was late.  “I’m sorry kids, but 11:30 pm is a little too late to start decorating the tree…” Even I have to draw the line.

So Josh slept late. And was late for school. And taking him late means homeschool starts late. Again.

Daddy used to say, “I’m a day late and a dollar short,” but I never remember him being either.

Unlike me. And I can also excuse my tardiness with “Better late than never.” That is if I’m going to start quoting  clichés.

Yet, somehow in the business of life, it all gets  done. At least the important things.

So the tree will wait until tonight after church.  Although, I really could do it today. I could squeeze it in while my girl is at work, between school and all the other stuff I have to do. I could even decorate it just the way I wanted – all symmetrical and color-coordinated. Not that it would be wrong…

But then it wouldn’t be “our” tree.  And the point of it all is to do it together.

Isn’t it about the journey rather than the destination? Another cliché. I must stop.

So here is an original:

Isn’t the doing it better than it just getting done?

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Here is a peek at my naked tree and mantle scattered with things just sort of left there and tossed upon it. Definitely not my usual decked-out mantle decor.

But I kind of like it. It’s simple and a bit rustic. I may decide to keep it.

Some things we come upon by accident. Sometimes they come late.

I’m thinking that late doesn’t always mean after the proper time.

Just maybe, sometimes late is the perfect time.

 

 

 

 

 

Called

I just came across an article in a magazine about raising a disabled child.  While I am thoroughly immersed in the special-needs world, I am drawn to articles in publications of a more typical nature.

Maybe I’m drawn because I am so aware of how the normal in this world often forgets about those deemed different.

The article caught my eye specifically as it highlighted a child with the same diagnosis as a close friend of mine’s son.  While rarer than Down syndrome or autism, it often “looks “similar. And yet still different.

Like disability itself.

The scope of disability is broad.  The word scope itself is contradictory to me, because it means “extent”, but my mind sees a telescope. Narrow, but enabling us to see an expansive view of things far away and out of our normal field of vision.

Disability is often like this. For those of us who live it daily, whether physical, intellectual or the many and varied combinations of both, our world can seem very small and closed as we operate with tunnel-vision.

My own experiences have often left me feeling alone and isolated.

Left wondering if anyone except me and those who live as I do really care about the seemingly small, yet realistically broad population affected by disability.

Social activities, clubs, groups and even churches are geared to the typically-developed.  While many strides have been made to accommodate the disabled, there remains the unspoken sense that things just don’t apply my special-needs child.

I parent him differently.  Time and again I have heard to treat him like my others and  have the same expectations, but the reality is – well, unrealistic.

How can I explain right and wrong to a child who often does not understand a word I say?

And if he does, how do I know he does? He can’t tell me. I can only assume and hope.

I never really know how much he knows. Only by extreme repetition and extensive practice is a task accomplished, but I really never know if he gets it, or if it is just rote habit.

The physical, mental and emotional exhaustion can be overwhelming.  For me, it’s the constant and active stage of pre-talking toddlerhood, encased in an 80-pound 12-year old. There is no indication or prediction of when or even if the next stage will come.

Throw in puberty changes and up goes the ante.

And that’s just the now.  The stress of planning for the future overwhelms me and while I lay it before the Lord, I feel irresponsible if I simply don’t worry.

Recently, my son accidentally got locked in our van. Fortunately, it was running with the AC on. But as I motioned repeatedly for him to unlock the door: “Come on, right here,” as I banged on the place the lock would so simply slide, he just looked at me and smiled.

I ordered a tag for his shoe with a safety alert blaring “I have autism and am non-verbal. “ Because running or bolting is a concern.

My typically-developed toddler once ran from me in a parking lot and after discipline never did again.

But again-it’s different.

I long to hear: “I love you Mommy”.  And add cute sayings for my list. My other children have many.

But one has only a name.

I know that words are not always necessary.

But the want in me aches to hear a spoken phrase.

And my self-centeredness makes me ashamed.

I read a comment recently from a mother who lost her baby who would have been severely disabled if he had lived. She said people told her it was for the best.

And she said she would see parents of disabled children and think how lucky they are.

I am blessed beyond measure to be his mother. I am privileged and unworthy.

My reality is the constant check of wanting more for my son and feeling guilty for doing so.

The constant element that permeates my life is only occasionally smattered in a magazine that talks of usual life. My constant different mixed with my everyday normal calling of wife and mother.

It’s where my callings meet –  of those I chose and those He chose.

A ministry given by the same grace by which He sustains me in my weakness.

He carries me through what He’s called me to do.

 “He who calls you is faithful, who also will do it.”

I often hear, “I don’t know how you do it.”  I do not think any of us really know how we do it, except that we just do because we have to.  And I don’t know how those fighting harder battles do it.

But we do because we are called.  Chosen.

Each of us is chosen, by Him, for Him, to do His work and share His heart.

And whether the world ever fully accepts or includes or even mentions those He has chosen me to speak for, I will not stop.

Because He has called me.

Because He is faithful.

Because He will do it.

What is your calling?

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Embarrassed

It happened today.

A slight blush shone through his little freckled cheeks and small tears hung in his blue eyes. His head hung a little low, and I knew what was coming.

“Mom, those kids were staring.”

His face couldn’t hide the mixture of embarrassment and self- ashamedness for being embarrassed by his older brother.

This kind of embarrassment only comes with having a stare-worthy brother.

As we parked for our end-of the-year celebratory lunch for Josh, I felt a twinge of angst. My eight-year old asked if we were taking the food home.

“Don’t you want to eat inside? What do you want to do? “I prodded and probed for his true “why” for asking and though he said it was fine to go in, but the truth was the proverbial elephant in the room.

The unspoken. The un-admittable.

Embarrassment.  And shame for being embarrassed.

According to Wikipedia:

Embarrassment is an emotional state of intense discomfort with oneself, experienced upon having a socially unacceptable act or condition witnessed by or revealed to others.

Joshua’s condition is considered socially unacceptable by some.

And though he does not know it, those who love him do.

His brother doesn’t want to feel this way.

But he’s eight. And things are a big deal at eight.

So as I tried to explain that they may just be curious, and even if they weren’t  we need to stand up for Josh and not worry about what others think, and people just don’t know what our lives are like and all the blah, blah, blah…

In my ramblings, I struggled between anger at those boys who were staring and my boy embarrassed about it and myself for feeling it sometimes myself.

I will clearly state that we not embarrassed by Joshua. We are not ashamed of him. Embarrassment creeps in rises up when those who do not understand him make us feel like he is less.

I needed to glimpse into my young son’s heart. As my own heart poured out sympathy and shared his pain so intensely, I felt Joshua’s pain unaware. My soul tore for each for different reasons.

“They think he’s weird. And that might mean they think I’m weird.”

“Well, I’m weird,” I said in some lame attempt to somehow make this whole “thing” better.

Then I told him that we needed to love Josh more than what people thought about him.

My oldest son, who often does with Josh what I cannot, had moments before pulled him out of the booth when he didn’t want to leave , put him in his car seat, then took him out of the van when we arrived home.

As we walked in, my soft-spoken and gentle son said to his youngest brother, “You know, I used to feel that way too.”

And I asked, “What changed your mind?”

He simply stated: “What you said.”

I can’t change people’s minds. I can’t know what they are thinking. I don’t know if they are curious or think my son is weird.

I don’t know if they are whispering prayers of thanksgiving that they don’t have a child like mine.

I could say I don’t care.

But I do.  I hate the stares. I hate them for all of us.

I hate that we look at people through our eyes instead of God’s.

And as I told my son in eight-year old language, “God loves all of us the same. God loves Josh as much as he loves you. God loves the homeless man drunk and smelly on the street as much as he loves the man who lives in a mansion.  We should all love each other like that. But unfortunately, people don’t.”

Later, we talked a little more and I asked him if he felt bad for being embarrassed and he said he was. Because he loves his brother.

But he said that people think Josh is stupid and they might think he’s stupid.

“So what can we do about it?” I asked.

I can love my son more than what people think about him.

Is that enough?

And what can we do about it?

 

Heart Sleeves

I have often heard that special-needs parenting requires a thick skin. However, this mama’s skin feels pretty thin much of the time.

My own momma used to tell me that I “wear my heart on my sleeve.”

So my exposed heart gets hurt and the skin under my heart-covered sleeve is fragile.

And I become weary.

Weary of the continuous fight. Education, services, therapies, specialists, doctors and the gamut of who and what is needed to simply sustain “special-needs life” overwhelms me at times.

My child, who cannot speak, possessing the cognitive skills of a toddler encased in a pre-pubescent body, often expresses his frustration through unexpected meltdowns and constant, loud stimming (self-stimulating behavior).

Learning a simple skill require constant repetition.

Nothing comes easy for him.

Heart defects and respiratory problems loom in the back of my mind as well as the risks of certain diseases more common in a child like mine.

I’m a guard keeping constant watch over a delicate, yet mighty fortress which is Joshua.

Other parents deal with similar issues. Some less. Some more.

Many watch helplessly as their child suffers from multiple seizures daily. Others cannot leave their home because of health or behavioral problems.

Others practically live in a hospital, as I did for several years. Surgeries become commonplace.

Others change feeding tubes, haul wheelchairs in and out of vans and struggle to get through doors while onlookers do just that. Look.

Penetrating stares and flippant remarks seem acceptable and even appropriate.

Name-calling and jokes are merely a Facebook newsfeed, doctor’s office and grocery store aisle away.

“Sit down! What are you, RETARDED??” yells a father at his running children as my husband sits waiting for an appointment.

“You know, I have the opposite problem. All three of my children are highly gifted,” boasts a mom as I push Joshua on a swing.

“You do know he’s sucking his toes, “says a woman disapprovingly to my friend.

“You must ride the short bus,” says a guy, driving an airport shuttle, to my friend whose son also has Down syndrome.

“There’s no such thing as ADHD. That’s just something lazy parents make up because they don’t want to discipline their children,” says a mother who is blessed to have children with no such issues.

We deal with insensitive bedside manner and quietly nod as doctors and specialists give their “expert” opinions.

“You know he will be moderately to severely mentally-retarded. You may want to reconsider terminating your pregnancy because you are so devastated,” says the obstetrician. To me.

“Your son is too profoundly mentally retarded to go to that school, “says a specialist. Again, to me.

Facebook pages dedicated to using people with Down syndrome for target practice.

Memes calling people retarded, tards, retards, potatoes.  And my friends “liking” them.

Look at my heart. On my sleeve, wet with tears for my precious boy and all those like him who would simply hug and smile at someone who called them that or posted that picture.

I have cried to the Lord in my most raw, real moments before Him that he picked the wrong person to do all this. Because I don’t have the stamina, the fortitude to withstand all that goes with this journey.

But God doesn’t make mistakes. He chose Joshua for me.

His life is worth every single hard thing I must do.

Or hear. Or read. Or even ignore.

God’s grace enables me to turn the other cheek when I want to scream, “YOU DON’T LIVE MY LIFE!!!”

He has entrusted me with much.

Often the most difficult is not what I must do for him, but what I have to hear about him.

But hurtful comments and careless words are no match for his smile.

And I realize that I am able because His power is made perfect in weakness.

And while my heart my lay open for all to see, I know Who holds it. And as long as it beats, it will always be vulnerable as not to harden to the harshness of this world, but to soften the hearts of those around me.