Autism – Vicki Neely

To Joshua on your 15th Birthday

Dear Josh,

I can’t believe you are 15. When you were born- even before- I couldn’t think past the first few years. I always pictured you as a little boy, never thinking about teenage or adult years.

So much focus in our world is on young children. It almost seems like moms stop being moms when kids reach a certain age but we know that’s not true. Kids need their moms at all ages.

But especially you. You still really need me.

It makes me happy and sad all at the same time. That’s called bittersweet and I think it describes life so well.

You know I thank God for you every single day. I tell you how much I love you and you see my eyes glisten with tears when you look at me with your gorgeous almond pools of blue.

I mostly cry because I’m overwhelmed with the joy that is you.

But I have a confession- I sometimes get a little sad when I think about what you might be doing. I used to let these thoughts consume me. Now I wonder if you wish things were different or if you miss doing certain things.

Sometimes I’m afraid to express any sadness or question anything will let all those who think you aren’t perfect just the way you are be justified in their thinking.

You were born perfect as much as your brothers and sister and as perfect as any other child.

You are unique and exquisite. Fearfully and wonderfully made.

But sometimes I go there- to the place of “what if”…

Take your birthday. You can’t tell me what you want for presents or what you want to do.

Birthdays are different for you. You don’t talk about what you want to do a year in advance. You don’t ask for a party or request your favorite meal or even have a say in what kind of cake you get.

Would you want to have a party, or just some friends over to hang out and play video games? Would you even like video games? Would you want to go to a movie? Out to dinner? You can’t tell me your favorite resturant. But I’d love to know.

Sometimes I picture you in the youth group. You would be raising money to go on a missions trip. You might even be going with your big brother.

I’d be “griping” about the Mother’s Day Bake Sale and how it’s not a relaxing Mother’s Day for me and we’d all laugh because it’s tradition and we would get in the kitchen all together and have fun.

Would you want to go to Verge Camp? I sometimes picture you sleeping on the bus and playing pranks and worshipping with thousands of teenagers and eating junk food and making silly faces at the iPhone pointed at you so I can see you on Facebook and know that you’re having a blast.

We would have had the “talk”. You may or may not be girl-crazy and you may or may not ever tell me about your crushes.

Instead…

I pack a pull-up in my purse (just in case), tie your shoes and look at the tag velcroed in the laces that reads: “I have autism. I am non-verbal.”

Your life is full of “special” conditions- special needs trusts and guradianships and IEP’s and medical issues and hundreds of things that complicate already difficult to navigate waters.

But in your 15 years, whether you know it or ever will realize it, you have changed my soul more than any typical teenager ever could. You have impacted lives without saying a word well beyond what most do in a lifetime.

Your smile is so genuine and pure, I know that you hold the secret of joy.

Contentment comes effortlessly and while I struggle against the worldly and unimportant, you are satisfied.

I feel lonely for you sometimes. You don’t have friends in the sense your brothers and sisters do. But I’m grateful that they let you hang out in the middle of them, and you laugh and put your hand on one of them to let them know, “Hey, I’m here. Thank you for letting me join in.”

Maybe if you could tell me if any of the things I wish for are your wishes. Maybe it’s my selfishness that wants these things for you that you care nothing about.

Once your Mamaw asked if I thought you knew you were different. I honestly didn’t know then.

But now- I think I know and I think you do.

Does it bother you and will I ever know?

But today, these questions can be left unanswered and I celebrate you, my precious young man who lives his beautiful life simply.

I am immensely proud of you. You, Joshua Neely, change attitudes and hearts. I pray God gives you the desires of yours because I know no one more genuine and deserving as you.

I don’t know if you can or will ever fully comprehend any of this. I guess I really don’t need to know if you do because God knows and He always knows best. What I’m sure of is that I am honored that He chose me to be your mom.

Happy Birthday. I love you.

Eight Months

The year-in-the-making, dreaded day happened exactly eight months ago today.

We’re on the other side. Life is back to “normal”. As normal as it gets for us, anyway.

The six-month follow-up appointment is well behind us. Our surgeon who guided us through for over a year has moved and it all seems a distant memory and like yesterday.

Series of X-rays to monitor progression come down to these before and after pictures of Joshua’s back.

Two rods inserted to correct a just-shy of 60-degree curvature.

Surgery is generally recommended when the curve is around 50 degrees. Josh’s was was progressing rapidly – around five to ten degrees every six months – an indication that it would only continue to worsen.

Such a curvature would most likely cause pain and could press on his lungs, although it may have already been happening.

Such is life with a non-verbal kid who gets frequent lung infections and severe reflux, who acts out aggressively when in pain, creating a constant guessing game of what causes what and what how to fix it.

This severe reflux caused extreme esophageal inflammation and a stricture which caused him to regurgitate his food. He underwent three endoscopic surgeries, medication and nutritional counseling. He had to gain weight and strength. We had to wait for his esophagus had to heal.

So over a year later from when he was originally scheduled to have the surgery, my husband and I once again turned our boy over to a gracious God’s care and a capable surgeon’s hands.

I would later question the decision.

The surgery went as well as it could have – except for a few moments of slight terror when the surgeon said he’d be finished then didn’t get to us until quite a bit later. While we were waiting Jerry said, “I hope this doesn’t mean there are any complications.”

We breathed again when the doctor gave us good news of successful surgery and I quickly forgot my husband’s words.

I reluctantly went home that night leaving him with his daddy and the amazing PICU staff, exhausted but relieved.
Until I received a call at 6:30 from my husband saying he developed fluid on his lung. I walked into a room full of nurses and staff and my son’s body protruded with tubes.

Bi-pap machines and GI tubes, catheters (one pulled out by his own feet), IV’s and PICC lines, soft restraints. Maintaining the balance of enough sedation to keep him still and out of pain vs. not too much for his blood pressure and O2 levels to go too low.

Watching lines and numbers on monitors and listening for beeps and bleeps became a twisted sort of game

My sweet sister-in-law didn’t want me to post pictures of him while he was in the hospital. I really didn’t want to either. But I took a pictures and texted them to her and others.

When Josh had open heart surgery as a baby, there was no such thing as Instagram or Facebook to instantly share every moment of life like there is today.

But even then, Jerry didn’t want pictures of him with all the tubes and how frail he looked. Back then, I wasn’t able to update like I do now and I wonder if that is better. Yet, I wish I had more pictures from then to look back on and realize the fragility of our humanness.

Looking back reminds me of how far we’ve come and that “this too shall pass” although sometimes things don’t pass how we anticipate or how we want.

The “normal” hospital stay of three to five days days stretched to twelve with most spent in the PICU. Jerry had to go back to work so we took shifts- I took days and he stayed nights.

I could set a watch by the time I began to get texts- precious friends who messaged, called, and visited.I felt prayers prayed from far off, and in that room.

I cried and prayed silently facing the wall as my sweet boy had tubes pushed in him and needles threaded through his veins. I watched his face plead with mine as he tried to lift his hands, restrained so he wouldn’t pull the tubes out.

He broke my heart.

One day, I had to leave his room which they inserted a PICC line to administer meds, as his veins were all collapsed from so many IV’s. I went out to the veranda outside the PICU.

The warmth of the sun was welcoming, thawing the chill deep in my bones.”Why did we do this God? Why are we putting him through all of this? Is it worth it?”

The guilt plagued and questions gnawed.

But there was no turning back. I couldn’t let my mind go to the place of something happening to him and it would be our doing.

I knew God had him, but I really didn’t know how much.

One one day much later -as in a couple of weeks ago – I asked my good friend who is a NICU nurse at Wolsfon, when the doctors let you I know when it’s “bad”.

She said they don’t really say much until it’s really bad. And then I asked her, “How was Josh, really?

And she said, “The day after when I came to see him, I was worried.”

I wonder with Josh, how many times God just protects my mama’s heart – how many times He keeps me from “going there” because I generally don’t. I don’t know why- maybe I am naive and it hits me later.

As we face another round of dental procedures done at the hospital in the next couple of months, I remember a recent conversation about the risk of anytime one goes under anesthesia.

Josh has been under more times than I can count off-hand. I’ve said before all this doesn’t get easier, but it does get familiar.

But should it?

I think I need to be be more concerned. More worried. If I’m honest, I feel guilty when I have peace. Resting feels wrong.

I’ve questioned myself over why we didn’t address Josh’s stomach issues earlier, chalking it up to stress over a new school, berated myself for not being as diligent about oral hygiene so that he doesn’t have to have all these dental procedures under anesthesia, the fact that I put my child “at risk” time and again.

One day during out hospital stay, one of the nurses who had worked for an orthopedic doctor previously asked if we wanted to know exactly what the surgery entailed. It was much more evasive than I imagined. At the same time, I was awestruck at how God designed out bodies to heal and regenerate.

Why the surgeon didn’t go more in-depth, I don’t know. Maybe because my husband already had to leave just hearing the basics If I knew everything, I may have run out screaming and saying, “No way!!”.

Should I have asked even more questions?

Am I not the diligent super-special-needs mom I should be?

I want to be the lionness-mom, but sometimes feel like the sheep who just trusts the doctors’ opinions and heed their advice.

I never feel like I do enough. I feel like I don’t pray enough, keep up enough, participate enough.

I feel like I don’t believe enough for things others think I should believe for.

Expectation is often exhausting.

But finally, a smile.

And now Josh is back in school and doing all his normal Josh-things.

And we are going through different trial now. Looking back on all of it reminds me that there is the other side of the mountain that stands massive and seems immovable..

I know the mercy of my Father. But I struggle because I know many whose outcome was not the one prayed for. Is God still faithful?

We know He is because He cannot lie, but my fleshy feelings want to whine and throw a tantrum and yell, “It’s not fair!!!”

Why do some children go through a lifetime in a few short years? Why do some have to endure so much they don’t understand and yet can’t tell anyone how much it hurts or how scared they are or ask, “Why are they doing this to me?”

I don’t always need to know, but I always have to trust.

Finding joy in the journey…

“But How Are You- Really?”

While I’m sure this probably isn’t just a southern thing, my whole life I’ve followed, my greeting of choice- “Hey,” -with, “How are you?” It just sort of runs together and people usually answer with the obligatory, “Fine, thanks,” or “I’m good. How are you?”

We all say it, because let’s face it – do people really want to know how we are? Does the acquaintance I see in the restroom really want to hear the whole, sorted story of my life at the moment? Does the cashier at the grocery store really care what my typical day is like?

True friends love us through our snark and are woman (or man) enough to tell us to get off our pity pot or conversely lend us that shoulder to cry on at just the right time.

The friends that ask, “But how are you – really?” and really want to know. My momma was that kind of friend. I’m so grateful for those friends.

Now, I don’t want to be that special-needs mom who just writes to complain how hard and constant it is, how different or dependent, or sick my child is. I have written such things at times because I think those who don’t live our kind of life need a glimpse in order to give parents and families of those with special-needs the understanding that is so needed and desired at times.

I also have three neuro-typical children and as much as I’ve tried to treat Joshua the same, his needs are different, his development is different, and parenting him is just, well, different.

Parenting any child – babies to young adults and in between, special-needs or not- is one tough job. But it’s the one I love with everything I am.

But some days, dang it, I just want to say, “I’m tired. I’m over adulting and want to just do something fun. I don’t always feel like the “strong mom.” But I have to be to because I am the mom and there is no break, no vacation because even if I were able to get away, my mind would never rest.

But I tell myself when I’m not good that things could be worse and I’m very blessed. Others would love what many of us complain about and that thought flips my gripe into grateful.

When it comes to “those” days with my son, I remember that he is worth every hard thing I must do.

Recently I was asked at church and I responded, “I’m doing very well,” and I truly was at that specific moment.

But then there is today.

And I’m not really sure how I am. I’m doing the daily, but it lingers somewhere behind, creeping up and in as I plan.

Because in one week from today, even at this very moment as I write, my son- the one with Down syndrome, heart condition, non-verbal autism who can’t tell me his pain level or express his fears – will be having a six to seven- hour surgery to fuse rods into his back in order to fix his 60-degree spinal curve.

Preparing by list-making for the week-long stay, coordinating with my older kids about who wants to be there and determining what to do with my youngest distracts me and I welcome the distraction.

This journey to next week should have been over a year ago. A hump/bump I noticed on his back started in motion a roller-coaster I didn’t see coming. We set a tentative date, and then were hit with another challenge that put the spinal surgery on hold.

Joshua had started at a new school after nine-years at his elementary school (he started at age three and we held him back in 5th grade) and he simultaneously started regurgitating his food. We thought it to be adjustment issues – not liking the cafeteria, the noise, the food. We packed his lunch and tried to figure what made it happen.

Finally, we concluded it must be physical and he had endoscopic surgery. He received a diagnosis of severe inflammation of the esophagus and reflux, with a stricture which inhibited his food from going down. After several months of medicine, three endoscopies and seeing a nutritionist to help with weight-gain, we returned to the orthopedic surgeon to reassess.

While the reflux was remarkably better, the scoliosis had worsened and surgery became inevitable.

Joshua is never a “typical” case. Normally, bloodwork and heart tests (EKG and echocardiogram) are done under anesthesia when he has other surgeries. But this time we had to hold him down for them to do these pre-operative tests and he doesn’t understand why and it takes much physical strength (on my husband and teenage son’s part to hold him) and emotional strength because, it honestly breaks my heart to watch.

Surgeries are not new for Joshua. In addition to the endoscopies, he has numerous dental procedures done under anesthesia, ear tubes, tonsils out, adenoids removed, hearing test (because he can’t respond to the typical ones), ear canals cleaned, tear-duct probe, and I’m sure I’m forgetting something because surgeries and illnesses and hospital stays all run together after a while.

But one I will never forget. Open- heart surgery. The first and most daunting.

October 30, 2002 is branded in my mind. The anticipatory feelings occasionally rise up and overtake me even almost 14 years later.

I hesitate to say I’m more “used to” him having surgery, but while it doesn’t get easier, it does get familiar.

I remember my daughter having a tear-duct probe as a toddler (same as Joshua) and thinking it was monumental.

Everything is monumental when it comes to our children.

During one meeting with the surgeon, my husband had to leave as he described what he would be doing to fix our precious son’s back.

I listened.

In the car on the way home, I looked at my husband and said, “I’m going to have to cry for a little bit.”

And while spinal surgery isn’t open-heart, it’s still major and while I am honestly okay this very minute, I’m not sure about the next.

I’m pretty certain that the feelings I had turning over my six-month old to a surgeon to fix his broken heart while mine broke too will most likely resurface as I watch my 14 year-old young man-child be wheeled away as I put my trust in my God and a highly-skilled surgeon.

And I will wait.

And pray.

And cry.

I really haven’t yet cried the ugly cry. Tears have come, but not the real, the body-shaking, tear-streaking, contact-lens fogging, “God, please protect my baby” cry.

There’s something cathartic about weeping. I will let myself at the proper time because I know I will because I know me and I am a mama and I love that boy with every bit of my breath and will fight for him for everything that is in the deepest parts of my soul.

And I know God is listening and will put those tears in a bottle and hold them and hold me and most of all hold Joshua.

So, how am I?

I’m good.

Maybe.

I honestly don’t know.

I’m busy and distracted and putting off the thinking too much. I’m Scarlett O’ Hara and will think about that tomorrow.

I’m grateful as I hear him in the other room making his noises and knowing that when I walk in to check on him, he will smile at me and I will tell him how much I love his face and he will pull it to mine.

And then I may not be okay.

But he will be, and that is all I need.

Paradox

Sometimes the very thing you never thought you wanted becomes the very thing you would die for.

Sometimes the dying gets real – putting to death pride, offense, ignorance, whether it’s within ourselves or in those around us.

I never thought I would have a child with Down syndrome. The concept was foreign to me as I would soon find is to so many. No one thinks “it” will happen to them.

I wanted no part of it.

At one time, I would have been one of those shouting, “Hallelujah,” when a diagnosis of Down syndrome was negative.

And I would have said, “I’m sorry,” when a parent got a diagnosis.

I would have continued to say, “I don’t care if it’s a boy or girl – as long as it’s healthy.”

Maybe I would have inadvertently and ignorantly used the R-word.

I would have, until I knew better.

But my most gracious God gave my husband and me a gift, wrapped in a slightly different package. Opening this gift opened up a whole new world.

It gave my other children the gift of compassion and fierce love along with the courage to defend and be proud of him and love those like him.

In life, the paths we anticipate to travel change in a moment and our journey changes for a lifetime.

A single chromosome.

Something too small to be seen with the naked eye, yet displays itself for the world to see.

Today, that world celebrates that little something extra.

But many still fear Down syndrome. For many it is the enemy. Many wish it away and even fight to eliminate it by eliminating those with it before they even have a chance to be born.

It’s not the desired outcome.

The irony is that the undesirable are often the most loving and become the most loved.

Today as I scroll through my Facebook feed I see the beautiful faces of those being celebrated and read words of those who celebrate them. Famous people and not-so-famous people alike honoring those they love.

Down syndrome in my world isn’t uncommon. I live with it, around it, through it. It envelopes and surrounds. I am always aware and never preoccupied. It is never far from my thoughts and yet it is never on my mind.

An extra chromosome. Minuscule yet enormous.

An enigma, this Down syndrome.

Such a part of him, but not who he is.

Yet he is all he needs to be.

Alternate Reality

Trudging through social media, I am reminded time and again of the old adage about opinions and how everyone has one. For the shy and the outspoken, Facebook and the like give all who wish to climb upon it a platform- a level opportunity to express one’s opinion – and I find that opinions are as widely varied as the subject matter.

I also find that sometimes conversations are needed. It was evident as I scrolled through my Facebook news feed last Wednesday morning.

A&E premiered Born This Way, a reality show featuring young adults with Down syndrome. I anticipated its showing; I consider myself as a special-needs advocate, so I support anything that promotes awareness.

As I watch shows or movies, or read novels featuring those with special-needs, I feel this on-edge anxiousness, waiting for some derogatory comment or inaccurate statement. In conversations over the years, I have learned to wait for something hurtful to be said.

I believed Born this Way would portray Down syndrome in a positive light, so I went in with no trepidation. I knew my friends within the DS community would be talking about it but I was not prepared for the discussions that would follow nor did I think my own questions would become a catalyst for such conversations.

Fellow parents of children with Down syndrome asked if the show was truly representative. Opinions varied, naturally. Posts and comments from moms whose children are more like my Josh were not being able to watch because they said their children will never to be like these young people.

Others with younger children were encouraged. They felt their children could grow to be like these young people and nothing could stop them from reaching their full potential.

Small white boxes held very different words. Hopeful parents lovingly compared their children’s progress and accomplishments, thinking optimistically about their future. Others anguished over multiple diagnoses, things their children still haven’t done and might not ever.

My own Facebook post initiated a discussion between moms that have been on my journey with me since Josh was a baby. We met at our local Down syndrome association and have remained friends. And the opinions of the show were as varied as our children’s abilities, but not necessarily because of them.

I remember back to Josh’s diagnosis. I craved encouragement. I sought out support. I wanted others to know that Down syndrome was not the end of the world. I even worked on a pamphlet of information for new parents that presented Down syndrome in a more positive light.

I too thought nothing would limit him. With intervention and therapy, nothing would be out of our realm of possibility for him to reach his full potential.

When I read about the show, someone commented that it should be shown an OB offices when a Down syndrome diagnosis is given.

Maybe.

Or- maybe not?

Many times the lines become blurred between expectation and reality. Sometimes those lines are so distinct and bold that reality is a slap in the face. Our own reality can be far from the reality on TV and certainly from “reality TV”. Even in the Down syndrome community.

Last year I wrote a blog post called “A Different Kind of Wonderful” and it was shared on another blog, title rewritten as “A Different Kind of Beautiful”.

However, my original idea was actually, “A Different Kind of Down Syndrome.” But when I mentioned that term in a comment, a fellow mother of a child with DS told me this was divisive.

So I changed it. Divisive is the last thing I would ever want to be within the community that needs to be bound together in order to support each other and advocate for our children.

But I am finding that there is division.

A friend expressed that she is afraid to tell of her son’s accomplishments. She finds herself apologizing that her child is doing well when others struggle so greatly.

There are moms like me whose children function at a much lower level and have additional diagnoses. We feel hurt and cheated that our kids “aren’t there “and may never be.

The young people on Born This Way are all – pardon the term, because I know many don’t care for it – high-functioning. But even the father of the young man with Mosaic Down syndrome himself said his son was higher-functioning.

And as I watched, I mentally pictured a collective eye-roll among many of my friends who can’t relate. I confess, I’ve rolled my eyes. I’ve thought, “If he just had Down syndrome,” or” If only he could talk.”

My heart sank as I read comments of friends and their friends on Facebook Wednesday morning. Many cried as they watched. Others won’t watch because they knew it would be too painful.

I know that pain. I quit attending Down syndrome association meetings and Buddy Walks after Josh’s ability to participate in the activities ceased. As autism became part of our reality, watching his peers pass him by developmentally sent me into a pit that took me years to climb out of.

Some days I still claw my way up from that dark place where I could only see through disability-colored lenses. The place where I didn’t think other moms “got it” because their kids could talk and sing in circle time and went to the bathroom and held a pencil and wrote and drew and read books and sat still at a table without turning it over.

After all, their kid had “just Down syndrome.”

I still get the cheated feeling.

Yesterday, my youngest son was in a Christmas program at our church. Before I had children, I used to dream of my kids being in precious pageants and watching them play on sports teams and dancing on a stage.

I’ve gotten to watch three.

But not Joshua. Never him on the church platform. Never him singing, filing in with the others and me seeing his face on the big screen as the camera pans to each child.

While some children with Down syndrome can, Josh cannot.

I know what it’s like to be smile with joy for my other children through tears about another.

I felt their pain and anger – anger about a show that is to represent Down syndrome, yet seems to only highlight the brightest and the best. Resenting the fact it doesn’t accurately paint the broader and wider picture of what Down syndrome looks like in many lives.

But I have to say I did not feel that pain or anger as I watched. I don’t know if I somehow detached myself or if it’s just where I am in my own in my journey.

Many days have been spent with me on my face before my God and Him showing me that my path is my own and not anyone else’s.

And that He chose my son for me.

As I quit comparing him to others, and only to him, was I able to see him for whom he is and he is not the sum of his limitations, nor his accomplishments.

In turn, it has made me be more open to those of all abilities and simple celebrate people. I write and tell our story because I want people to know that while having a child with special-needs is life-altering, it is not a tragedy.

Will this show help change the perception of Down syndrome? Can it accurately do so if it doesn’t represent the community as a whole? Do we as parents want the most positive or the most realistic picture presented of living with DS?

These are questions I am not sure how to answer, because if I’m honest, my feelings are fickle and can change at a whim. I don’t always know what I feel about Josh’s disability. Some days it’s no big deal. Other days it is all-consuming.

I just know what I feel about him. And that absolutely nothing will change the depth of love I have for that precious soul.

Will I watch tomorrow night? Most likely. Simply because I want to and because I can now. I may not have been able to before. And that would have been okay.

A few tears may fall from my eyes for the young woman who cannot bear to hear the words “Down syndrome” because it makes her feel uncomfortable. Or be angry toward her mother because for taking her 20 years to accept her.

I may laugh because some are witty and I may even have to shoo my youngest out of the room if they begin talking about more adult subject manner.

I may cry because certain days it hits me harder and just because it didn’t last week doesn’t mean it won’t.

Stay tuned…

Invisible

I really don’t have time to write today. But it’s one of the days that if I don’t, I may explode, the pieces of me, of my brokenness scattered for all to see.

And though writing is like breathing and sometimes I just have to, I hesitate to be real. To write real.

So I hold my breath. Because I never want to invite my friends to a pity-party with me as guest of honor sitting on my pity-pot like the queen of I’ve-Got-It-Bad-Land, sobbing as my tiara gets ripped of my head from my steroid-raging, non-verbal child while my subjects scurry to get towels to wipe the plethora of mess I’m privileged to clean numerous times daily.

Privileged? I changed that three times before I actually left it because it kept coming back and I could not shake it no matter how I tried. So, I must be. God has given me this life and I am to be thankful in all things. Not for all things, but in them.

And while being a wife and mother is my heart’s desire, some days, I sense that it’s not enough.

As a young woman, I felt that need would be satisfied with a career. As I’ve gotten older and dedicated my life to the Lord, I admit I can envy those in ministry, those preaching inspiring messages and leading magnificent Bible studies. I want to tell my story on a stage, be given a platform for what God has called me to do through speaking and writing. I want to go on mission’s trips and even envying my own children who can and the fact they have their whole lives ahead to serve God. I wasted so much time with foolishness.

Yet I know comparison produces nothing and I must walk my walk and do what I am called to do right now.

But sometimes, my legs get cramped, my feet become calloused and my body weary and sore. My arms bear the physical marks of a frustrated and ill child.

I cry to God, “Do you see this??”

“Do you see what I am doing?”

“Do you see me?”

No one sees.

I am invisible.

My other children bear the brunt and carry my hurt. It’s unfair to them, but I know no way around it.

I looked at my oldest son as he helped me one day. I just looked at him and said, “It’s a different life,” and he nodded. He often carries a load I feel unfair but am so thankful for his heart that is so soft, yet must be so burdened. But he never complains.

But I do at times. I complain when I shouldn’t because others are facing worse. I complain that others complain about things that seem insignificant.

I am a hypocrite when I complain. I have much to be grateful for and the greatest at this very moment is that God’s mercies are new every day.

Every minute.

When I am at the end of my rope, He grabs the other end and pulls me to Him.

He wipes my face and bottles my tears. He does not judge me for them. He knows my heart and feels my hurt and sees my thankfulness even as I shake my fist at Him.

And He sees me.

The Loudest Silence

This fell out of my Bible the other morning. One of my favorite pictures of my boy. One that just seems to capture all that he is.

A few years ago, Joshua had surgery to have impacted ear wax extracted, ear tubes inserted as well as having his tonsils and adenoids removed.

This was the first time my husband stayed with him overnight at the hospital. We decided it best that he stay, since Josh had been going through behavior issues and had become increasingly harder for me to handle. Looking back, I realize I had never considered when he was an infant anything long-term. I blocked any frightening future and only considered the right-then.

My quiet time with the Lord the next morning consisted of daily Bible reading. Determined to read the Bible in a year, I followed the plan, often falling behind.

But that day – in black and white was my word from God.

I wrote it on a post-it note and put it on the back of the picture.

Because Joshua’s ears were just cleaned and cleared and opened by little tubes, now his tongue would be loose and he would speak plainly.

So specific in what I had always hoped for.

When Joshua was little, I thought we could have enough speech therapy so he wouldn’t sound like he had Down syndrome. I used to think people with DS sounded “deaf” and my pride took over as I told myself that my child would sound “normal.”

I shudder as I type this.

If I read this from someone else I would likely be angry and offended because my perspective has changed so greatly. I also how shallow and selfish I can be.

But confession is cleansing and I confess I how prideful and arrogant I’ve been.

Pride is a dangerous thing. God opposes the proud. I am so un- proud of my pride and ashamed of my entitlement.

I’ve laid bare, pride stripped and feeling forgotten. I no longer care about plain. I just want words. And feel like that is selfish too.

I’ve heard that words aren’t always needed and I have myself said that Joshua has changed people without ever saying one.

Some say this is how God intends for him to be because this is how He made him.

So the LORD said to him, “Who has made man’s mouth? Or who makes the mute, the deaf, the seeing, or the blind? Have not I, the LORD? (Exodus 4:11)

I have been told I should be grateful in all that he can do. He has made amazing strides and has given us glimpses into things he knows that we never thought he did.

But Joshua does things that we don’t understand and he can’t make us understand. Some of them are potential harmful to himself and to us. Right this very day we have a doctor’s appointment to seek answers for an issue that has been going on way too long and is taking its toll on him and our family.

Just two words would give us a starting point. “Josh hurt,” or “Josh sick.”

Or, “Me sad.”

Actually one word would suffice. “Mad”.

Anything to know what he is feeling and why he does the unexplainable.

He has therapy to lessen his frustration by increasing his communication and he has made great strides. Many times, we know exactly what he wants.

The other times..

I know – sometimes words are not needed.

But sometimes I’m selfish.

Some parents of non-verbal kids have said they have a secret language. I get that. I can “read” Joshua pretty well and he can communicate his basic needs of hunger or thirst by taking our hand and pulling or simply grabbing what he wants.

But there is something about words.

As a writer, I love words- their sounds and the way they paint a picture in one’s imagination that is so intimate to the one reading. Or listening.

When I talk to people with Down syndrome and am both amazed and envious.

For years I’ve ached to hear, “I love you Mommy.” I waited to hear his cute phrases and word mix-ups and all those funny things that I have written down from my other children.

Joshua’s page is blank.

My mama’s heart still longs to hear his voice, though now it is more of a man’s than a boy’s. And that leaves me feeling a bit cheated.

But really, I want it more for him than for me, so that he can express himself in more than grunts and limited signs.

I remember a friend years ago describing a special-needs girl, saying that she couldn’t talk and made “retarded sounds.”

I know the sound. I live with that sound. It resonates through the rooms and blends in the walls.

I’ve been asked if it gets on my nerves and if I’m honest, I would say yes, sometimes.

But I am afraid to be honest because the sound-maker was almost taken from me. The sound means that he is here with me and my gratitude at God’s grace leaves me with a sense that I shouldn’t complain.

But my humanness longs for words he can’t form no matter how hard he tries. My soul cries silently while I smile at him as he pushes out a sound that makes no sense.

I can’t lean to my own understanding because I don’t know how or even when autism took over and stole his voice.

And the point in which I no longer cared that he might sound as if he had Down syndrome.

It is no longer the enemy.

But I’m broken and helpless over his frustration.

I hear mommies say to young children, “Use your words,” and hope they realize how blessed they are to say that.

I listen to animated and greatly detailed stories from my youngest with eagerness because I don’t take for granted that he is able to express himself so brilliantly.

I am a talker and a listener and love teenagers in the kitchen telling stories and laughing and often watch Josh take it all in and wonder if he knows he’s missing out.

Even as I type, I hear the sounds of silent. The noises of the non-verbal.

In a conversation with my mother-in-law, I mentioned that Josh listens to this counting song over and over and that if he could talk, I bet he could count.

I bet he can read, as he recognizes words on his movies and can “match” them to their cases or knows if that movie is playing.

So could he read? Isn’t reading the recognition of letters, really? Letters arranged so that they take on meaning in their form. But he can’t “read” because he can’t speak.

So why can’t he speak?

She asked if he had speech therapy. yes, but only to the extent of other forms of communication. One can’t work on speech that isn’t there.

And as we talked, I started saying words I had never thought through, yet seemed to make perfect sense – to me, at least.

Signs with Joshua must first be done hand-over-hand, as with most everything we introduce to him. He generally does not imitate. Seemingly endless repetition leads to his mastering the task and eventually, he learns a sign will get him what he wants.

Neurotypical children learn imitation quickly. As a baby learns to talk, he babbles and soon imitates what he hears – words. A parent tells the child to say a word, and eventually will, forming vocabulary.

I realize there is really no way to “show” Joshua how to talk.

He makes noise, so his voice “works” but he cannot form words.

I don’t know why he doesn’t imitate sounds – is it because of cognitive delays, or autism or because he doesn’t know how to form the words. I can’t jump in his throat and “hand-over-hand” a word physically like I can for signs or tasks.

And as I explained this, she merely said, “That is a shame.” And I guess it is, because I cannot find anyone who knows how to make this happen and I don’t either.

But instead of wondering why, or asking if I caused this or even what can I do, I look to Jesus, Who Himself said, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.”

God isn’t finished with Joshua. Or me. Or any of us.

Through Joshua, I’ve learned to not for granted things that come so easy for most of us. I have learned to rejoice in the simple and am in awe of the mundane because it is difficult for many.

The works of God are displayed in him whether he talks or not. But I don’t think He wants me to stop asking. We are to seek and we are to pray and we are to believe.

In the meantime, His grace is sufficient.

Until that day…

On Mother’s Day

Mother’s Day. As a young woman, even before I meeting my husband, I longed for the day I’d become a mother. I never thought much beyond that-then imginary first child. My family plan was planned more by God than us.

I never considered homeschooling and and not going back to work once my children reached elementary school age. I certainly never expected to have been given the gift of a special-needs child. Life turns unexpected and sometimes hard and often bittersweet.

I miss my momma. That early, middle-of-the-night-morning as she began her forever in Heaven, I wiped my tear and sleep-filled eyes and thought, “What am I going to do on Mother’s Day?”

Not her birthday, not my birthday, not even her funeral, but Mother’s Day.

This day. I confess, I love waking up as I did this morning to gifts waiting to be opened.

I was even given an early gift late last night after 14 hours of baking for my son’s mission’s trip bake sale today. A dress to wear to church this morning. Because my daughter knows I don’t buy much for myself. And also because I’m sure she likes and wants to wear it too. And I love that.

I love her. She is my fiery soul unleashing her inward and outward beauty growing into her own woman as she shares her love of Jesus and passion for people with the world. She is not only my daughter, but my friend. My firstborn. As I held her the first time, I thought, “This must be what Heaven feels like.”

And my boys. I adore my boys. My oldest son, my quiet man-child finding his voice. He embodies Proverbs 17:28, “A truly wise person uses few words; a person with understanding is even-tempered.” His heart is of a servant and a protector. He is much like Jesus.

My special one. My own heart died a bit when I found out his was sick and he would not be what I expected. I discovered that all gifts do not have to come in the usual packaging to be exquisite and journeys begin with a single step. I may be on this one for my lifetime, and I welcome it. He has made me love with a fierceness I didn’t know I possessed and has given me a ministry without ever speaking a word.

My baby. He’d hate being called that as he will soon enter the year of “double-digits”. My child of trust – the one God spoke to me so clearly about. He is his daddy. He gives me a glimpse into what must have been my husband as a boy. He is all boy, all the time and thinks he’s a teenager too, yet still comes to me to sneak his hand up my arm – my “cold arm” as he called it when he was little and ask for a hug. I am so glad I listened to God, and not to man.

As much as I love this day, it makes me weepy. Not just because I miss my own momma, but for those childless mothers. The ones who want so desperately to be mothers. Newly married, I sat in church and watched my friend stroke her toddler’s hair as his head lay in her lap. I desired that so much I could taste it.

And I have no idea why God blessed me so easily with children when I have friends who want them and can’t or have had to go to great lengths to have them.

I think this day must be agonizing for so many. Especially in a world where children are idolized and parenthood seems to make one complete. I am guilty of sharing too many “mom” stories and getting so caught up in my busy-mom everyday, that I forget.

I think of the childless mother. Those who long for children, yet arms remain empty.

The grieving mother. Those without their children this first Mother’s Day. And those who have had to endure this day year after year.

For many, today will take every effort to step foot out of bed and breathe. Many will walk the halls of churches with plastered-on smiles covering a hollowed-out heart. I pray I am sensitive to those who may be hurting this day and am a source of grace and healing.

A mother is an influencer. A mother is an encourager. A mother is a mentor. A mother is a teacher. A mother is a friend.

For all mothers. Those with children and those without.

Happy Mother’s Day.

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.

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.

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…”

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.

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.

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.