family life – Vicki Neely

Judging Mom

Momma always said that I was afraid I'd miss something.

I see why little kids hate to go to bed. They think they might miss something. My husband says this to me to this day.

Our bodies were made to rest. God created them this way. I frequently lose the battle when I fight sleep, but I dream (sorry-bad pun) of all I could accomplish if not for those precious hours "wasted" sleeping.

Sigh.

Maybe this goes back to my child hood. Maybe because I was never sleep-trained.

I was never sent back to bed if I woke in the night but instead welcomed to wiggle in down between my parents' warm sleepy bodies.

I was never disciplined for getting out of bed, but allowed to fall asleep on the couch. My family joked that Daddy carried me to bed until I was 12.

It's really not a joke.

Maybe because I was a later-in-life baby and a little "spoiled".

Or maybe because my mother said she raised me according to how she felt she should, unlike my sister and brother, who she raised according to how everyone else thought she should.

I am my mother's daughter.

I am more relaxed about bedtime than most. Homeschooling allows for this freedom, but even in the early years, I didn't do what I was "supposed to".

I "rebelled" and felt guilty.

I complained to Momma once that my littles didn't want to go to bed at 7:30 like all my friend's kids did.

She asked if I needed them to get up early. I said no.

"Well then, what's the problem?. They don't have to get up and go to school. Let them stay up later and sleep in."

It didn't occur to me that I'm the parent and I make the rules, not others.

Momma had learned this by the time I came along.

How I miss her non-judging attitude toward my methods or lack thereof. She gave me the much needed permission to do what I needed to do.

This parenting journey is one we forge ahead in often blindly and with great trepiation. And often we fall into condemnation.

Though often inadvertently, I have been made to feel I did everything wrong with regards to my young children's sleep habits. Even by those who didn't even have children.

And likewise, when receiving well-meaning advice from those without special-needs children who suggest what I "should" do about my son- I just smile and nod.

Smiles and nod. And sometimes defend my parenting.

My personal experiences differed with all four of my babies. I've laughingly (well, maybe not) said I had the most no-sleeping babies on the earth. And then, I was given special needs child who still has significant sleep issues. I have no solid answers.

Or a solid eight-hours of sleep.

But, many seem to- have all the answers, that is.

I am not looking to debate Babywise vs. attachment parenting, demand feeding vs. scheduling or any of the countless methodologies and philosophies out there.

But there are always debates. Why? Why do we feel the need to judge others' choices?

I chose to breastfeed my babies – some for so long that I dare not tell anyone because, you know, that judgement – but I'm not going to tell a mom who can't or chooses not to that she's harming her baby or an inferior mother.

Likewise, I'm no less a brave mother because I had my babies at a hospital rather than at home.

I am a firm believer of doing what works for you and your family.

I've offered this little nugget to more than one struggling mom and sense a sigh of relief because someone has given her permission to just do what she must in order to get through another day.

I longed for that grace yet often felt the sting of judgement.

Not that advice is not appreciated or taken under consideration, but when it is served with an air of heir of superiority, it won't be well-received.

My daughter was the first grand baby to come along in 12 years. She was passed from one set of arms to never touching a solid surface for her first week of life it seemed. So when that time came to put her down…

I practically fell into the crib placing her every so gently. Then tiptoeing out.

Then…the scream.

I couldn't do it. I shuddered at her shrieks and became distraught at her distress. This helpless, little life that I had just brought forth beckoned me to scoop her up and hold her.

And I did. For a long time.

The time I resolved to let her cry it out, she had gotten her leg stuck between the crib bars.

I had failed. Failed at making her "self-sufficient" at the ripe old age of three months. Failed to sufficiently ignore her so that she could self-soothe.

Instead I soothed her. My husband worked many hours and was often away, so she slept with me.

And when I became pregnant with my son,

Wait!! Did I just say pregnant?? How did that happen?

Lets just say that she was not always in the bed. And since hubby worked so much, just the fact that I managed to birth four children in fairly rapid succession speaks a bit to our creativity.

But I digress.

Having baby girl snugged next to me in my big comfy bed made the exhaustion and relentless sickness of my pregnancy managable.

It was my "dirty little secret."

I never once thought she was manipulating me by not wanting to sleep in a room by herself across a big dark house. I never thought of sleep as an obedience issue.

I simply think she wanted her mommy.

And I was all to glad to indulge her.

And the next one.

And so forth and so on.

Some slept in the crib. But some didn't take to it as well, like my youngest.

He was the one I was going to finally "do it right" with. But one attempt to let him cry resulted in him shaking the crib so hard it that he literally broke it. More acurately, he broke the locking mechanism so the side would not stay up. So we had to put it out on the curb and never replaced it.

Yet had I been too strict with my youngest sleeping in his bed and his bed only, the stressful time when my Momma was dying could have been much more so. At barely four, he went from a Hospice couch to car seat, to bed and back and forth countless times without so much as a peep.

God's grace covered my "slack" parenting. He even blessed it.

Looking back, I wish I had done some things differently. I know young moms now who are able to do what I couldn't and I admire them greatly. At the time of my kids' babyhood, I didn't have the tools, the energy or the support. I simply survived.

Some days survival is enough.

Truth is, my kids are turning out to be pretty darn amazing.

And guess what I've found?

Teenagers sleep. A lot.

And they weren't even trained.

A few sleeping places of the "no-sleeping" Neely kids…

“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.

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.

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?

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?

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.

My Coffee Table Life

I enjoy decorating. Finding and placing and arranging things pretty. My house is now full of things I love from my childhood home that scatter memories of those I love and those waiting for me in Heaven.

I pin décor and arrangements on Pinterest – pictures of mantels and shelves, bookcases and walls.

And decorated coffee tables.

There was a day when my coffee table held pretty things. Strategically placed and dusted and shined.

Slowly, the coffee table became a place where I propped my feet as I nursed my babies. It has held finger prints of toddlers scaling its sides. It is now often sticky with cereal milk, or pancake syrup. It serves as a Yahtzee and Uno-playing table.

No beautiful coffee table books reside there, but instead a menagerie of stuff that manages to take up residence at some point on this four-legged stuff-holder: Southern Living, homeschool books, an IPad, ear buds, DVDs cases, Josh’s white rags, my tattered Bible and journal, pens, pencils, and various remotes (all in a pretty basket, of course).

Not that ALL of that is there at the same time.

Well, maybe sometimes.

But my coffee table reflects my life. Not only my life now, but how it has evolved.

From freakishly- tidy and arranged to functional and lived-in.

The table is scuffed and the stain is rubbed off in places. Feet places. Truth be told, we could use a new one.

I clean it, polish it, straighten things on it, and cull out unnecessary items. Sometimes I consider placing some pretty candles or an arrangement of books.

But then I think of the feet that will prop on it and decide to leave those things for the shelves.

Those can stay pretty. The coffee table for now will be functional.

I may or may not have years to come of “pretty coffee table”. I’ve heard moms say that when their children are grown and gone, and they can have things the way they want them. Or empty-nester moms with impeccably-decorated houses who say it wasn’t’ always that way.

But with my Joshua, I may always have a “child” around. And I hope to have grandbabies scale my coffee table one day in the future.

So I can gaze at Pinterest and lovely tables. Mine is fine for now. But I may go clean last night’s pizza sauce off of it.

All That Is Needed

Pure contentment. That feeling that all is right with the world.

With so many challenges and trials of life, often contentment is replaced by grumbling, complaining, feelings of dissatisfaction and emptiness. This past year, I confess I have experienced more of the latter than the former.

But recently, I gazed into my living room- my own little world -and I glanced upon what was right and beautiful and amazing about my life.

Not an extremely out-of-the ordinary evening – but I’ve found that family time gets more scattered as children get older and our lives get busier, as little people grow and develop their own friendships. But this night, my family was all in one place. Even my special-needs son, who for so long would not stay in the room during family time. A little thing that many take for granted, but to which others can relate.

As I was finishing up the dinner dishes (actually just stacking them to do later as not to miss this precious time), scooping ice cream and ever-so-sneakingly squirting sweet-boy’s meds in his (don’t judge me, it’s the only way he’ll take it)- I stopped.

And I breathed a prayer of thanks to the Lord. I absorbed the feeling of all-is-right-with-the world. I let out sigh of praise. For the moment. For being able to serve my family. For being where I love, with those I love.

I handed out bowls and then I fed my precious little boy ice cream laced with Amoxicillin. Then I snuggled up next to my youngest and took out some knitting. A movie played but my husband was the only one really watching. My oldest son did schoolwork, my daughter scrolled on her phone until she fell asleep, my youngest watched football videos on my phone that has no sound and my sweet boy began to doze off next to his daddy.

But we were together in the moment. I have set a goal this year to be more intentional. To live fully in each moment God has given me. To be content whatever the circumstances. . Discontentment seethes of ungratefulness. And I have so much to be grateful for.

Like most of us, I get so distracted and preoccupied with life. I am like Martha when Jesus said, “You are worried and upset about many things, but only one thing is needed. Mary has chosen what is better, and it will not be taken away from her.”

Many times, it’s about choosing what is better. Though there was still much to be done and always more waiting, this was what was better.

And as I lingered in the presence of my treasures in the room that night, I realized it’s not about the activity taking place. It’s about presence.

My presence. My family’s presence. God’s presence. Nothing else is needed.

Pure contentment.