Picture This…

The more kid-trends I see on social media, the more I realize that I am no longer a young mom – although in my head I'm only 30-something, but I have to face reality at some point.

However, Facebook will never let me forget.

Now, my youngest is turning 12 in a little over a week, so my chance to post pictures every month with little number patches on tiny onesies, is out.

Half my children were born in the 20th century and the other half in the 21st, which makes my oldest kids millennials. (What are 21st century kids called? Do they even have a name yet?)

For a moment, let's go back in time (did you sing that in your head? – Gotta get back in time…) to the last century.

The 90's- back before we partied like it was 1999 and felt the Y2K panic. To a time when phones were just for talking and capturing the moment meant portraits taken of our offspring at…

Come on, say it with me…

Olan Mills.

Oh, my fellow parents of young adults, let us reminisce. Let's tell the parents of today how they have missed wriggling little bodies stuffed in tiny cradles and plopped in bathtubs positioned to make them look naked.


Oh how to make the perfectly-timed appointment, somewhere between feeding and nap time in order to get the "happy" window. Because you don't want to have to pack up and come again.

At least not before next month. You had to next month.

Because you bought the package. The "Watch-Me-Grow" package.

Tons of cash and lots of pre-planning, because you must buy just the right amount of pictures so that when you have to sit down, address, and mail them to friends and relatives, you must not miss anyone.

Because they would know. Somehow, even before Facebook, they would find out.

Thus, the overbuy.

Today, in the backs of the baby books sit sheets of unsent pictures that you can't throw away, because that's your kid.

And that would be wrong.

Oh, young ones, #thestrugglewasreal.

Social media has made it so easy for parents to share their babies. Not to mention, cheap.

The package prices – can we talk? But how can you put a price on memories? And every picture is adorable.

Every. Single. One.

Then, as more kids come, you get the cute Christmas pictures of littles looking at books in front of festive backdrop that is clearly not your house.

Now I know many have pictures taken by professional photographers. But even these are trends are different.

Maternity pictures. Which are stunning and I'm very jealous I didn't have those done.

Did Olan Mills even offer? I think not.

Now, mommies-to-be post pictures of every stage of the "bump" along with chalkboard signs and comparing baby size to fruit.

I just know when my girl was the size of a rice-Krispie. I'm not sure that would have qualified.

My bump was a boulder by the time we got pictures. Like right before labor.

Pregnant pics were mostly afterthoughts – like, "Oh, we should probably get a picture," usually for the baby book in the "While Mommy was Waiting for Me" section so that I wouldn't face the shame another blank space like the "Daddy before Marrying Mommy" slot.


I could have least worn a shirt without a stain.

Nowadays there is so much prep.

The gender reveal. Not sure when that actually started but we have been finding out the gender of our babies for at least the last 20 years.

But now there are parties? Are there presents? Why didn't I think of this?

Speaking of presents, I need enlightening on this one.

The Push Present.

Mom gets a present from Dad for pushing out the baby? Didn't he just give Mom a baby?

Seriously, it a sweet way to commemorate the occasion. Not that you will forget it. I never had a push present but my husband and I recall each and every birth by what food he ate while I was in labor.

Back to the present -can it be anything? I do see lots of jewelry.

Yet I keep thinking this could be problematic. Apparently new dads don't know what babies do to necklaces.

They eat them.

If this had been a thing in my day (I sound so old and grandmotherly – I actually kind of like it in a weird way), I would want him to give me the gift of a nap. Or maid service.

Alas, we generation X mommies and those from earlier generations only had baby showers. Sometimes only one and some only for the first or second baby.

Somehow, people figured that after a couple of kids, we really had everything we needed. Except sleep, but that still hasn't happened in my case.

But back to Olan Mills and that monthly appointment. We just keep signing up and packing them all up and praying that the squeaky duck would make baby laugh. Then came baby three, and then four.

And one day, your youngest may or may not have asked why his picture looks different and you don't actually tell him that you may have forgotten to set his three-month picture appointment and his was taken at home and developed by Walgreens.

All purely hypothetical, of course.

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…

Cloud-Chasers

I lost it a little.

My oldest son turned 18 on Saturday. My second adult child. My girl is 19 for a couple more months and then she will no longer have teen attached to her age.

The older kids were going out for his birthday. First to yard sales, then breakfast, to do some shopping and just hang out as young people do.

And as my daughter came to kiss my good-bye…

It happened.

The tears started flowing and she had a sort of slightly panicked look.

"What's wrong??"

"I'm sorry – didn't mean for you to see this- I didn't know this was even going to happen," I said as I tried to hold back the tears that came without warning and explain what I wasn't really sure about until that very minute.

See, this was a Saturday and it was party day. This is the day I put on the birthday. I'd be up early cleaning the house and making food and today…

Josh and I were left at home alone.

I realized at that moment that I am not the center of their world anymore.

I'm still a part, but not like I used to be.

We could have have a party, but that's not what he wanted. We will have a family dinner, but it has to be tonight because the older kids both have conflicting job schedules and time together takes a lot more planning.

And it's hard.

I now wish I had spent more time at home at with my parents. My momma used to watch my friends and I get ready and she never asked us to just stay.

Maybe I wish she had because maybe I would have.

And I won't ask because I don't want my kids to do things out of guilt.

They are meant to fly.

This is how it's supposed to be.

But it's hard.

I love that they like to hang out together and have things to do and cars to drive and friends and jobs and lives.

They are amazing and I had a part in that because I am their mom.

A hard part of being mom to amazing kids is watching them be amazing without you.

How can something be both breathtaking and steal your breath all at the same time?

However, I want say to young moms who are posting pics of two-year olds lamenting the fact they are growing fast -which they are, because they do- please do not dread them getting older.

Because it's incredibly fun and if you waste all your time dreading it, you will miss it.

Seeing your little people become their own people is something indescribable.

Having real conversations and deep insights into who they have become is priceless and precious.

Instead of dreading, embrace.

Embrace the stage. Cherish the chaos, be glad for the tiredness, the mess, the tears, and the loud. Not all get the privilege.

Relish babies sleeping on your chest, the running and tugging of littles, the hugs of sweaty, stinky tween boys and the kisses on the head by ones way taller than you.

Sit on her bed and talk about dreams and memories and watch her put on makeup. Shut the door and eat Chipotle and watch re-runs of shows from her childhood.

Because it's far from over.

It's another beginning.

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…




Stormy Weather

Threats of huge storms loomed over us yesterday along with warnings of an unusual storm system bringing tornados like we do not see in this part of the country.  
While there were storms that brought much damage and even killed several in Georgia, my own hometown of Brunswick getting some pretty severe weather, we never got more than a couple of bands of hard rain. Nothing unusual for North Florida.

I waited for the storm. I fretted. I called Jerry to come home from work immediately because it was about to go down. Or come down. Hard.

I watched the highly unlikely-overhyped news for hours. My Facebook feed fueled my fear. 

All for nothing. 

I wasted time that I can’t get back.

My plan was to paint our coffee table but I was anticipating the electricity possibly going off, then I couldn’t finish if I couldn’t see and I needed to watch the news and blah, blah, blah….

I put it off out of fear. Anticipation of the inconvenient.

How often do we put off what God has called us to do out of fear? Procrastinated out of perceived inconvenience?

How much time do we waste waiting for and worrying about the storm that never comes?

Or if it does, do we sit scared instead of warring in prayer?

Whose report do I believe? Where do I dwell- in the Most High or in the pit of fear?

I declared, “It will not come near us” – and it didn’t, but my actions didn’t reflect my words as I continued to pour over the news rather than His word.


In His mercy, He answered my prayer, but I wasted worry. Actually, all worry is wasted. Displaced faith shrouded in the guise of “concern”.

But instead, I will say of the Lord, He is my refuge and my fortress;

My God, in Him I will trust.

Let me look to You and You alone, so the world’s voices do not crowd out Your truth…

On Birthdays, Blessings, and the Beautiful

Today I am another year older. I find it funny how a birthday is but one day, but you become a whole year older. It’s funny how we spend the first half of our lives wishing we were older and the second wishing we were younger. Or maybe that’s just me.

 I’m stealing away a few moments since it’s my birthday and it’s probably the one day of the year that I don’t feel guilty for doing so. Birthdays give us permission to be spoiled so I really kind of like my birthday. 

As I type, I listen. 

I hear sounds of my sweet and special son making his noises, his iPad blaring. He is the treasure, but the iPad is a blessing . It keeps my sanity by keeping him happy through the current illness- strep and sinus infection, hyper-irritability and super-stimming brought on by steroids and albuterol. 

I hear the sweetness of my youngest’s voice telling me, “No, I’ll do it- it’s your birthday.” This shows me he really can get his own breakfast, yet I do it every other day. And I really don’t mind because I feel he still needs me and he says I “do it the best” so I will until he won’t let me when it’s not my birthday.

I hear sounds of quiet while my older children sleeping. Teenagers sleep late and I let them because they are responsible kids and get done what the need to. At least most of the time, but the do’s outweigh the don’t so I give grace. And I sometimes still peek and watch them sleep because no matter how old they get, they will always be my babies. And besides, one left me flowers on the table and set my coffee cup out. 

I hear my phone ring with my husband telling me to enjoy his coffee becasue he left it when he went to give Josh one of his meds. And I’m so thankful for a man who loves his children so unashamedly and does so much for and with them. He does what I can’t and says I do what he couldn’t. And I love him for saying so.

I hear my phone ding with texts from friends and messages of birthday wishes and Facebook posts and remember surprises and lunches and cupcakes and am undeserving but so grateful. 

I hear my heart thank God for all this and more. I thank Him for all I am able to do and for grace for what I cannot. 

Today I cast my cares and remember His promises. We are going through some fires.  

I must believe that He is faithful to bring us out so we won’t even smell of smoke. 

My circumstances do not change Who He is.

But today. Today, I will pray, write, drink coffee, teach and tend. Maybe I’ll read and knit. 

I will spend time with my people. I will go out for a little while with one. I will come home and hear sounds of those I love more than life cooking dinner and laughing since they really don’t cook but are trying anyway.

I will sit at my table with scratches and mismatched chairs and laugh at bad jokes and eat good food.

And thank God for this beautiful life. 

“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.

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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.

 

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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.
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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…