You Are Not Living Until You Have Kids

My dad is one of the best storytellers I have ever met. I’d like to say I inherited that from him, but his skills are not matched by many in that department.

He is also well known for his many life sayings. One story I remember him telling since as far back as I was old enough to even kind of grasp the meaning is the “you’re not living until you have kids” story.

When he was a young adult, back before him and my mom had ever really even decided to have children, an older man once told him that “you just aren’t living until you have kids.”

Although, as my Dad tells the story, he thought that man was crazy and didn’t think he really know what he was talking about.

He and mom had a great life and things were humming along just nicely.

Then a few years later my dad and mom, in fact, did have their first child, my sister. As the story goes, turns out the man wasn’t crazy at all. He was spot on. And I’ve heard the saying, “you’re not living until you have kids” my whole life because of it.

For whatever reason, whether I really believed my Dad or I just loved to hear the story, that saying has always stuck with me.

As a teenager, I liked to think of myself as wise beyond my years. But I’m sure most teenagers think that and few truly are.

Regardless, as aware and wise as a person can be at a young age, there are certain life lessons that can only be taught by experience.

Kids are one of those lessons.

Although mentally I could understand how having children could change your life completely, like my parents, I also did not really understand the full meaning behind the man’s story until our daughter was born.

From the moment I first laid eyes on our daughter, there was a feeling there I’d not known I was missing in my life.

The word joy comes to mind, but at the same time doesn’t seem like it adequately describes that initial feeling when your heart is so full you wonder if it is going to explode in your chest.

In those first moments of life, you want everything for your child.

Love. Safety. Comfort. No hurt. No pain.

You have a feeling of protection like you have never known that seems to set in immediately and comes out of nowhere.

A feeling of protection that is so strong, you would without question and without hesitation, give your own life for them. And that was just the first moments of our daughter’s life… before we ever knew she would have special needs.

When I’ve been asked what it is like to be the parent of a child with special needs, the best way for me to describe it to someone, is to tell them to imagine all of those first parental feelings you have … on steroids.

All special needs families have dealt with their share of hell at some point or another, that just goes with the territory.

Most that I know have also experienced traumatic events, some multiple times, and a lot suffer from some degree of PTSD.

Our family has certainly lived our share of these events. What tends to result from those experiences is an even more intense bond with that child and a greater appreciation for their life and your own.

There is something to be said for those parents who have sat in emergency rooms, NICUs, and PICUs.

The ones who have held their child’s hand while they lay in a hospital bed helpless.

The ones who have ridden in ambulances and watched their children medivac off to a hospital while leaving the parents behind.

The ones who have got down on their knees, with tears in their eyes, and prayed for more time or a better life for their child, for their own strength and guidance, for answers and purpose.

Many of these of feelings I wish I’d never had to experience and hope to never have to again. But there is a flip side to all that too.

You experience the good feelings just as much, if not even more, intense as you do the bad.

Those first words from a child that is non-verbal. That smile you were not sure you would ever see. The sounds of laughter you never thought possible.

Holding their head up on their own for the first time. A few steps with assistance after three years of hard work.

The joy in your child’s eyes when you break out their favorite book or sing their favorite song. These are joyous little miracles that will make your heart skip a beat.

Most parents put their all into raising their children.

Special needs parents put their all and then some. That’s not to say they are better parents by any means.

They do it because there is no other option. Children with special needs require special attention, special doctors, special therapies, special school plans.

If you are like us, you spent the early months in specialists’ offices trying to determine the best course of action.

When you thought you had something figured out, something new popped up and you started again.

You spend more one on one time with special needs children because most of them require it.

While most traditional children begin to gain independence as they get older, some children with special needs never do.

When people have joked that they’d just take my daughter home with them, I joke back and tell them they can have anything they want but her…

I’ve got too much time invested in that one.

But if I’m honest, it’s only a half-joke because the hours we have put in just to accomplish in three years what most kids accomplish by six months are too numerous to try to count.

Being given the opportunity to love and raise a child unlocks a portion of your soul you never even knew existed.

When it comes to your children, you feel with an intensity that you never knew was possible.

And that is true for both the good and the bad that comes with raising kids.

For special needs parents, I think that intensity is magnified a bit. It’s not that a parent may love a special needs child more than another child.

I simply mean that parenting a child with special needs brings awareness to a person that you don’t even recognize is missing.

For me, my Dad’s story resonates even more because our daughter does have special needs.

Now, three years into this journey, I can’t even imagine our lives any different.

I don’t know what we ever did before we had her. And she reminds me every day that we are finally living.

A Puppy Kind of Love

Before we ever decided to have a child, we first decided to have a puppy. That puppy would grow to be 6 years old by the time our daughter was born. He was spoiled beyond any scale of necessity.

We rarely went places that he did not accompany us. And if we did, he got some type of treat when we returned. Although he was 60 pounds, he was still a lap dog most of the time and loved to cuddle.

He got all the attention all of the time.

And he was our first experience at caring for and keeping alive something other than ourselves.

Fast forward to my pregnancy and things started to change. He was no longer allowed in the bed with us because I was miserable and couldn’t sleep.

Then after her birth, our lives changed even more. We didn’t just spend the three nights in the hospital away from him initially after she was born, which really threw him for a loop.

When she was two weeks old, we started our month long stay at Children’s hospital. He stayed with my sister who he loved dearly.

But I know he must have felt like we had abandoned him completely.

Over that time span, I think I only came home and saw him once or twice.

Once we finally came home, I don’t think he really knew how to act. He was glad to see us. But at the same time, we had left him.

On top of that, there was a new person in the home that seemed to take all the attention.

And admittedly, we were just zombies for a while, going through the motions of living because we didn’t know what we were doing anymore.

Our home felt like a revolving door at times with all the different therapies our daughter was receiving.

And he didn’t know what to do with that either. He didn’t understand why someone would be coming over and not want to see him.

He never really bonded with our daughter, and to this day ignores her for the most part.

He’s not mean to her. He just tends to act like she isn’t there. Occasionally, he will let her pet him, but only for a short period of time and only when it is his idea.

I know this article is a bit off the beaten path, but I write just to show how special needs affects so much in the family life.

It affects the parents of course, and the siblings if there are any. It affects how the extended family and friends who are like family interact with you.

Some say nothing because they don’t know what to say.

Others over include because they don’t want you to think for one second that they are treating you different (even though you are obviously different).

It also changes the family dynamic in the best ways too. It makes families grow and exposes families to things they would otherwise never really know about.

It makes people more compassionate and patient. It makes people check their own lives sometimes and make adjustments.

But it also affects the family pets. They are usually the most loyal, but often times the last thought of.

As our puppy is approaching 11 this year, and our daughter is approaching 4, we have come a long way in this special needs parenting journey.

We are learning that no matter how hard it is, at times we have to take moments for ourselves. And we are also working on paying our first baby, our puppy, more attention these days.

He was our first experience with loving and caring for something day in and day out, other than each other.

He’s laid at the foot of our bed through the hard nights and been a should to cry on when the tears came.

Even though our daughter isn’t his favorite person, he still gets up with us at night if she is sick or cries out.

He’s celebrated the high points with us even if he didn’t understand what we were celebrating. And he is a constant source of comfort when we need it.

We were lucky to have him first, as he has been a big part of this journey for us. And our daughter is slowly starting to grow on him some.

I write this article mainly to say that if you have a pet the feels more like a person in your family, stop and show them a little extra love today.

They are a much bigger part of this journey than we tend to give them credit for. And occasionally we need to recognize them for that.

A Cerebral Palsy Diagnosis

Cerebral palsy (CP) is something I knew existed but had only heard about in passing until our daughter suffered from brain damage at two weeks old.

The result, a CP diagnosis when she turned one along with several other diagnoses.

My daughter is classified as having quadriplegic CP. And yes, it basically means what it sounds like; her entire body is affected in some way.

It is not a muscle issue, meaning there is nothing wrong with her muscles.

The problem is the brain is sending the wrong information to the muscles.

And because of that, the muscles can’t do their jobs correctly.

The hardest part of an initial CP diagnosis is that it covers such a vast variety of things. People can be minimally affected, having only a limp in their gait.

Or they can be totally affected like my daughter in which every area of the body is limited in mobility.

For her, she struggles with everything from sitting, walking and talking to pickings up a simple object off a table.

People with CP can have low muscle tone and their limbs almost look limp. Or they can have high muscle tone and their limbs look contracted all the time.

Then there is my daughter who falls somewhere in the middle with varying muscle tone.

Sometimes she looks like she can’t bear her own weight. At other times, she can stand up with support.

You can put her in a sitting position, and she will just fall over. But you give her a little support and sometimes she will sit relatively normal.

When you are given a CP diagnosis, well that is really all you have in the beginning.

Many of our doctors told us that it is up to our daughter to show us how her CP would affect her life long term.

It wasn’t what we wanted to hear at the time.

We wanted real answers. But you don’t get real answers with CP.

The only thing truly known to help people with CP is therapies. So, ever since we received the diagnosis, she has seen every type of therapist you can imagine.

And even now she still has 2 physical therapists, 2 speech therapists, an occupational therapist and a music therapist. She also attends riding therapy on the weekends.

These are the people, who over the years, have made things possible for our daughter that were otherwise thought to be unachievable.

Because of these therapists, a little girl with little hope of ever walking is taking independent steps in her gait trainer.

The same little girl who could not hold on to anything at 1-year-old, is grasping toys and bringing them to the midline.

Because of these people who refuse to give up on her, a little girl who was released from the hospital with a g-tube for feeding is now able to eat some.

She is also jabbering and talking some and she is using a complicated speech device to show off just how intelligent she really is.

The CP diagnosis stinks. When you are handed that diagnosis, at the very least, and if you are lucky, there is a minimal limitation you will have to deal with.

And for so many people it means a lot of nevers.

But it isn’t a death sentence. It is an obstacle to climb in life.

As parents, we want to remove obstacles from our children’s paths because it is hard to watch them struggle. But overcoming life’s obstacles is where real strength and character is built.

People with CP are some of the most amazing individuals you will ever have the chance to meet. I know because I’m raising one, and she inspires every day.

I Will Not Drive a Van

It is always the odd things I seem to have trouble really accepting.

It is rarely the overly obvious things that most people see and feel sorry for us for.

Nope, it is always something crazy, something you don’t expect, something completely random.

And it usually comes out of nowhere.

It’s been well over a year ago, maybe even closer to two, when my sister and I were out shopping one day.

We were in the kids clothing section, and I walked a little too far into the older girls clothing.

I was trying to make my way back to the infant section when I happened to notice a stand with little girl’s underwear.

For some unknown reason, I stopped in my tracks and just stood there staring at them.

My sister finally found me and asked what was wrong.

I tried to shake it off like it was nothing.

But being the persistent person that my sister is, there was no changing the subject, and I finally confessed that I didn’t think I’d ever be able to buy our daughter underwear.

She assured me that it was too soon to know that.

I agreed with her, but for the rest of the day all I could think about was the real odds of ever being able to potty train our daughter.

It was quite unlikely I’d ever be buying her underwear.

This really shouldn’t have been that big of a revelation.

At the time this happened, I had already come to accept a lot things: our daughter would never leave the nest; we would never celebrate her wedding day; if we didn’t have other kids, we would not be grandparents; walking would be very hard for her but maybe not impossible; speech would come a little over time, but most likely it would be limited and aided by a device; and a wheelchair would be a necessary part of life.

Potty training was just another to add to the list.

So, naturally I wasn’t expecting to be thrown that day in a retail store walking past underwear in the children’s section.

This same kind of thing happened to me again recently. I’d been driving around a Jeep Grand Cherokee for several years.

For just me, it was all I ever needed in a vehicle.

It sat up high enough so that if I ever “accidently” ran over a curb I would not tear anything up.

I loved the way it drove (even after a few encounters with the curb). The seats were comfortable and I had the radio presets like I liked.

I knew it inside and out and I was completely content.

For longer than I should have, I fought the need for a different car that could actually fit our special needs lifestyle.

So what if we were breaking our backs trying to get our 30 pound daughter in and out of her car seat.

So what if we had to take the wheelchair completely apart to get it in the car.

So what if we had to put everything in just right if we wanted to also get her gait trainer in there.

So what if we were crammed into the car like sardines every time we took a trip.

It was MY car. The reasonable side of me knew we needed a van. I knew a van made more sense than anything and it would make my life easier.

But it felt like I was giving up the last part of me that felt normal. I knew that once we bought a van, that is what I’d drive for the rest of my life.

And I wasn’t ready to accept that.

Even if it was my reality.

But you know the interesting thing about normals? They can change and adapt.

And if you give it long enough, almost anything can become a normal. Like having a child with special needs for instance.

After you’ve done it long enough, you don’t really know what life is like without it.

So, I finally broke down and we bought a van.

And you know what I’ve figured out?

This van suits me better than any other vehicle I’ve ever owned.

It’s really my spirit vehicle because I’m an extremely practical person.

On top of the van being ridiculously functional enough to handle all of our special needs requirements, it’s also just functional at everyday life.

I’ve always been notorious for buying something big and not having a way to get it home.

This has happened on more than one occasion and has caused a few small fights throughout my marriage.

But the same weekend we bought the van, I was able to haul home a piece of furniture (that would not have fit in my jeep) with ease.

And just the other day, I made a trip to the home improvement store to get 8 foot boards.

They were no match for the van.

I didn’t even have to hang them out the back window, and they weren’t up in the front seat with me as I drove home.

Sometimes I think when we are hit with something out of the blue, it helps to try to change perspective a little.

That’s what I’m working on with my van.

Sure, it’s not my Jeep, but in a lot of ways (and not just for special needs) it is better.

This Mama is now a van owner (even though when I was much younger I swore I’d never be), and it is really not so bad.

Life is all about accepting the things we really can’t change and embracing the things we’ve been given.

I’m sure six months from now, my van will be my new normal.

And I think I’m going to be okay with that.

A Roll Tide Kind of Saturday

For those who will read this post and do not personally know our family, we are from Tuscaloosa, Alabama (USA).

That’s right…. title town itself.

I am a University of Alabama grad and returned to my alma mater a little over a year ago as an employee. As my husband and I dated through college, we loved the atmosphere of this town.

It is simply electric during football season on a home game Saturday. You can feel it in the air days before kickoff.

Even before my husband and I walked down the aisle, we knew Tuscaloosa would remain our home.

We wanted to raise our children in the college town we had grown to love.

We knew we wanted our kids to experience the atmosphere of a brisk autumn day in Bryant Denny Stadium with pom poms shaking in unison and everyone united with one common goal … winning.

We wanted our kids to know Big Al personally, to run freely on the quad after watching the elephant stomp, and to experience tailgating with family and friends.

We had visions of enjoying family events like the homecoming parade, trick or treating at the sorority houses, attending gymnastics meets on a Friday night or spending a Sunday afternoon at The Joe.

However, our introduction to parenting was nothing like we had imagined and this college town, at first, was just one reminder after another of that fact.

Being parents to a daughter with special needs made our life seem so different than everyone around us.

We did not know how to navigate outside our own home. At first it hurt too much seeing children our daughter’s age doing things she should be doing but couldn’t. But as time passed we learned to cope with those feelings, and we slowly began to venture out a little more.

We started tailgating every now and then with family and friends. And we even tried attending a football game for the first time in 2017, but it was not the best experience.

Our daughter’s limited visual input made it hard for her to understand why people started cheering spontaneously and why the band would start up out of nowhere.

We just didn’t know if it was something she could understand and enjoy.

By the time the 2018 football season rolled around, our daughter had grown so much that she was in a wheelchair.

So, when the opportunity to buy season tickets arose, we initially thought there would be no way. We were concerned about wheelchair access.

We were concerned about having to take in medical things like mic-keys, medicine, and formula. We were concerned about people and whether they would be accepting. We were concerned about the crowd noise.

But the stubbornness in me decided that we shouldn’t just write it off as an impossibility yet, and I started to do a little research.

I learned we could get wheelchair accessible seating and we would have a reasonably close parking space.

After a few calls, I found out that we’d be able to take in all our daughter’s medical supplies and there would be first responders at all games in case of emergency.

Thanks to the wonderful company my sister works for, we would have a place to tailgate with people that already knew our daughter and would welcome us with open arms.

Last, I found some ear muffs that could help cancel out some of the spontaneous noise.

It was starting to look doable. So, why not try?

That’s the conclusion we finally reached. Our daughter, despite her limitations, is a people person. She loves to socialize more than anything else.

What better way to encourage that than with 100,000 of your closest friends and family? We figured, worst case scenario, we would try it for a season.

If she hated it then we wouldn’t do it again.

This past fall, we attended four home football games. And she LOVED it!

Our experience could not have been better.

We found that most of our Alabama family are extremely nice and welcoming to our situation. Our seats were great, and we had no problems with accessibility.

We were a little surprised to find out that the University really had things figured out and everything worked well. The stadium event people and first responders were amazing.

We even started looking forward to seeing Ms. Nancy, the event concierge assigned to our section, each Saturday.

We also found that by the end of the season, our daughter no longer needed her ear muffs. She had grown accustom to the spontaneous noise of the stadium and even seemed to enjoy it.

This past football season was an amazing experience for our family.

It reiterated the reason why we love our college town and why we chose to grow our family here. Sure, our original vision never had a special needs child in it. But that is only because we did not know what a blessing that would be.

And if I am being honest, time has shown me in more ways than one that our future never really goes according to plan anyway.

What’s that saying? “Life is what happens when you are busy making plans.”

It couldn’t be more true. While I’m still a major planner, life has shown me that to survive and be happy in this world, you and your plans have to be adaptable.

Sometimes you have to find a different way to accomplish the same goal. We are so thankful that over the years the University has adapted to the growing needs for handicap accessibility and does it so well.

We are also thankful for the family atmosphere the University brings to this town. We will forever be supporters of crimson and white.

Let’s bring home another championship to title town!

Roll tide!

Coming Home… Again

Sometimes you just have to be unfiltered and raw and tell the story just like it happened. Our story is not always pretty, and we are a constant work in progress.

But we have grown so much because of it.

When she was around 6 weeks old, our daughter was released from our local Children’s Hospital after about a month stay.

She is our only child, and we had only parented “alone” and at home for two weeks before she got sick.

The next four weeks we had the help of the medical staff at the hospital making sure she was going to live and once that fear passed, making sure everything was going as well as possible.

When we loaded her up in the car that August day, it was like bringing a new born home from the hospital for the first time all over again as she was not the same child we arrived there with.

She was no longer sucking on a bottle.

She now had a g-tube placed in her stomach to assure that she receivd proper nutrition, and she had daily doses of medication to prevent seizures (something my husband and I had no prior experience with).

We were told many things by hospital personnel. She has significant brain damage. She will be developmentally delayed. We don’t know if she will have much cognitive function. It may be dangerous for her to try to eat.

And so on and so forth.

Some of it was my sheer ignorance to what I was being told. After all, I had no medical training or experience whatsoever.

The other was likely the stubbornness I’ve carried with me since I was a child.

Whatever the reason, I just couldn’t process it all. Even after being told everything we had, I was determined that those things they were saying would not be my child.

After all, she was awake and alert and breathing on her own. She had some strength in her hands. She could move her arms and legs. She could cry when something was wrong.

These were all things normal babies did.

So, pulling out of the hospital drive I clung on to the only positive thing anyone would say “babies’ brains are plastic and they have the capability to build new pathways.”

All the other things didn’t matter, because our daughter’s brain was going to remap and we were headed home finally to start our life. Admittedly though, as happy as we were to be going home, we were scared to death.

The hour-long car ride was terrifying and our daughter cried nonstop.

With us from the hospital came a medical pole, a feeding pump, feeding supplies, a mic-key, prescriptions we needed to fill, a link to several videos on seizures, and a litany of follow up appointments we would be returning to Children’s Hospital for.

We would soon learn that our daughter HATED her car seat and tears and screams would come every time she was in it, for the entire time she was in it or until she fell asleep (whichever happened first).

We would also come to learn that brain injuries and certain medications make children very cranky.

I remember there was a period of time when we wondered if she would ever stop crying.

When we discussed this with her neurologist she told us that some kids that have suffered similar brain injuries will be cranky and cry for years. How would we endure that?

Several people, in their attempt to relate to our situation, told us, “oh my child was a fussy baby” or “she must have colic like our child did.” But neither of those things were what we were experiencing.

No one that passed along those tid-bits of information were dealing with a child whose brain was destroyed by an infection and was having to take high dosages of medication to control seizures.

At those comments, because we know people mean well, we would just smile and agree (I know better now than ever that sometimes people just don’t know what to say).

We did our best to find some kind of routine.

After several weeks, I finally went back to work and our daughter started preschool at a local childcare center.

The ladies that watched her everyday were a God send, and to this day we are still so grateful that God put them in our lives at that time when we were still walking lost in this world.

They had our daughter during some of the worst days, but they never complained. They were so gracious, and it gave us a much-needed reprieve at times.

But no matter how hard you try, you can’t find a normal that early on.

It takes much more time and knowledge than you can possibly understand just a couple months in. Looking back, we were more like robots, going through the daily actions, but not ever really being in control.

We did our best to hold it together on the outside, when it felt like there was nothing left on the inside. Most days were filled with work and preschool.

In the afternoons I’d pick-up our daughter, and she would already be crying.

I’d take her home and rock her until my husband or my sister or my mom came to relieve me.

It truly takes a village, and we broke three rocking chairs in 18 months trying to comfort our baby. Days were long and numb and nights were sleepless.

The emotional turmoil, at least for me, was the worst part.

We loved our childcare center, but it was hard dropping our daughter off everyday and watching all the children in her class develop like she was suppose to.

Everyday, I left wondering if it was possible now for her to ever developmentally get where the other children already are.

And if I’m honestly, that conundrum never really goes away… with time you just learn how to deal with it better and gradually think about it a little less.

Many mornings I would fight back the tears until I made it back out to the preschool parking lot.

Then I would cry myself to work, dry it up, and put on a face of “everything is okay” for the next 8 hours.

I’d be lying if I said there weren’t a few extremely bad days during it all. Several household items were broken in anger (of course never with our child in the room).

Sometimes I just had to walk away from it all and actually allow myself to feel the anger and sadness I had inside. Sometimes I took my feelings out on others.

Admittedly, I stopped talking to God all together for a while.

Luckily though, others had not.

If you give it long enough it seems everything bad has a turning point, a rock bottom so to speak. Mine was the day my husband got home from work and our daughter had been screaming for hours.

Nothing could comfort her or me by that point. He was exhausted. I was exhausted. She was miserable.

I looked at my husband and said, “I can’t do this anymore.”

This was not the first time he had come home to this scenario; it seemed to be becoming our norm. His response that day was the reality I needed, “well what do you suggest we do, put her up for adoption?”

When I heard the words out loud, I just cried uncontrollably. It brings tears to my eyes now to even think about that day.

My husband has been the rock in our family through all of this.

I know he never for a second actually considered putting our baby up for adoption. But he knew me well enough to know I had to hear that, out loud were the words were real, in order to find a way to move forward.

I needed to come to the realization that this was our life, regardless of whether we asked for it. I needed to find the blessing in all the madness.

Adoption was not something we ever considered, and it has never been talked about again.

The mere image in my mind of our daughter being cared for by someone else; the idea of not seeing her and holding her every day hurt more than everything else we’d already been through.

That day, those words, that moment of truth was exactly what I needed. No matter how hard what we were dealing with was, we still loved our daughter more than anything in the world (that is why it all hurt so much).

That was the point I realized I had to move past my self-pity and figure out how to help her.

Once my mentality shifted, the days slowly began to work themselves out. We found that Taylor Swift songs would stop the crying for a little while, and a swing donated by a good friend allowed us all some sleep at times.

We sought early intervention through local therapist and eventually got our daughter into a special needs school.

We found little ways to adjust our lives so that we could find our new normal, and I started back talking to God. I can’t really tell you when it all happened, when our “normal today” first took hold.

Each day things just got a little better as time passed, and I am sure thankful for that.

Looking back on those early days is a blur almost like a dream. Some days the past doesn’t even feel real or it feels like a lifetime ago even though it’s just been three years.

Other days, when something doesn’t go quite right, you can feel the pain again like it was yesterday.

Special needs parenting teaches you life lessons daily, but more than anything, it teaches you unbelievable love and incredible patience.

It forces you to grow as a human and learn compassion for others like you have never known.

At times your life spirals out of control.

There will be days your heart stops in fear and other days it feels like your chest is going to explode with excitement.

I’ve said it many times, but it’s worth saying again…even through all the heartache, I wouldn’t trade this life we are living for anything.

And I am just thankful we were giving the opportunity to make that journey home from the hospital…again.

The Middle of A Storm

When Firefly asked the blogger family to see if a friend would write a blog about what their friendship with our family means to them, there was immediately one friend I knew would be up for this challenge.

You see, I grew up in a very small town which arguably has both pros and cons.

One of the best things that came out of this though, is that I met one of my very best life-long friends there.

She is a person that I share some of my earliest memories of my life with, and there are very few of my school age memories that don’t have her in them.

Even through adulthood, we have maintained our friendship and talk sometimes daily. Our friendship only grew closer when we were both pregnant at the same time, our children being born less than 2 months apart.

I love the admiration she has for our family because I feel the same admiration for hers.

What her blog post below doesn’t tell you is that she too has been given a life she did not plan.

She is now the mom of four beautiful children. Her second child turned out to also be her third and her forth. Three beautiful baby girls all born on the same day.

Now, I have no idea how she handles a three year old son and triplet girls under one on a daily basis, but she does so with grace.

I am so thankful that we were put on this earth to share our lives together and watch each other grow through the good times and the bad.

I hope you enjoy her blog post below, and if you want to read more about her daily life, you can view her blog at https://justholdenon.com/.

Blog post by: Ashley Smith Parr

I remember the first day I met Lanie. Lindsey, who I have known since we were in diapers together, walked me to the NICU at hour local hospital to meet her.

Lanie was just perfect, and Lindsey was beaming with the joy and love only a new mother does!

The second time I got to see Lanie was a day I will never forget. Lindsey’s sister and I drove an hour to the closest Children’s Hospital where Lanie was being treated for spinal meningitis.

She was a very sick baby and the whole trip was gut wrenching. I remember on the ride home I just questioned God. Why did this happen? How did this happen? How could you let an innocent child get so sick?

Why would you allow such amazing parents and people endure so much pain?

The days and months following this trip changed my entire view on life. Lanie did get to come home from the hospital when I know there are kids every day that never do.

However, that doesn’t take away from the month they stayed in the hospital with their child while she fought for her life, only to be told she has a diagnosis but they will not know the extent of the damage until she gets older.

I saw it rock them to their core.

Their lives were changed forever and they didn’t even know what to prepare for. I can only imagine it’s like knowing a storm is coming but not knowing rather to seek higher ground or get in the basement.

Today, over 3 years have gone by and Lanie amazes people every day!

She has bounded over expectation and astonishes not only her parents, family and friends but also several doctors and nurses. She is doing more than some ever thought possible and she does not give up on anything.

She is the strongest, smartest little 3-year-old I know.

She always has the biggest smile on her face and she has a love for life that is contagious!

Sure, this isn’t the life that my friends envisioned when they found out they were pregnant, but I can honestly say that Lanie could not have asked for better parents.

Lindsey and Travis are as good as they get and they have not let any news or diagnosis hinder them or tear them apart.

If they were ever bitter, you never knew it.

They have used everything as a stepping stone towards how to help and give Lanie everything that she needs. They did not stop living their lives, they just had to change their direction.

This family has taught me that you will never understand the storm while you are standing in the middle of it but you must have faith that there is a reason.

I have always admired them, and they are so unaware of the impact that they have made and continue to make daily in the lives of the people around them. I love them all and am blessed to know them.

Let’s Trick or Treat

Special needs parents, more so than anyone, know that special needs come in all forms. Some are very minimal, barely recognizable by the naked eye. Others are so severe it impacts your every daily function.

Our family falls somewhere in the middle . . . severe enough to be noticed … it’s hard not to see the wheelchair, but we have been able to find our own kind of reasonably normal daily life.

That being said though, this time of year always brings up the question, what do we do on Halloween? And I know we are not the only special needs family to wonder this.

I’m a big holiday Momma, and we celebrate all the holidays in our household (Halloween, Thanksgiving, Christmas, Valentine’s Day, 4^th of July).

I feel like they remind us to stop a few days out of the year and have fun. And as a bonus, the holidays usually bring us close to family and friends we might not have seen in a while.

We decorate our house for major holidays and there is always good food involved. I enjoy dressing our daughter up in holiday attire, and I can remember how excited I was the first time we bought her first Halloween costume. It felt … NORMAL.

Unfortunately for us, a lot of our holidays have been accompanied by sickness; Halloween included the stomach virus the first year and RSV this past year. On top of that, our daughter does eat much by mouth and has a lot of physical limitations.

So, every year we tend to have this struggle, if she is even well enough, do we take her out and go trick or treating?

In the back of my mind I know this would not even be a question if she did not have special needs. But still in the past the answer has been no.

However, not going trick or treating creates an internal struggle for me because I am a firm believer in inclusion despite a person’s limitations. Our daughter attends a school where inclusion is just the norm.

So, when she is at school or attending school events, we never worry about whether people will look at her funny or wonder why we brought her.

But going door to door in our neighborhood would be a different story, and so we have yet to embark on this adventure. Maybe it is fear or just uncertainty that tends to keep us inside on this holiday. I’m not really 100% sure.

I try not to focus on our child’s limitations, but they exist whether we dwell on them or not … that’s just reality.

So, what do you do when you have a child that is not physically able to ring the doorbell or say trick or treat; when they can’t reach for the candy bowl or say thank you and walk away; when feeding issues limit their ability to even eat candy; when their costume revolves around what the wheelchair will accommodate?

Well to say the least, it makes trick or treating a bit discouraging, and it is easy to find a million reasons why sitting out this holiday might make the most sense.

And in years past we have let all of these reasons justify why we did not get out there and knock on doors with all the other kids.

After thinking about it a lot though, I believe it is time our family changed this and tried something new! When I let myself move past the negatives and really start to think about it, there are just as many reasons for why our daughter should go trick or treating.

We have tons of friends who love her and will welcome getting to see her in person in her Halloween costume; she loves being around people and the interactions will make her day; our wheelchair will make it easy to get her from house to house (and she can’t run off); we could design her costume to include her wheelchair.

We can record “trick or treat” on her big mac button and let her push it when people open the door; we can help her get a piece of candy and this will work on her reaching and fine motor skills; she will be exhausted by the time we are done and we all should get a good nights sleep; and since she can’t eat a lot of her candy, we get a treat as well.

I’ve learned first-hand that there are so many ways to talk yourself out of doing things when you have a child with special needs.

But lately I’ve been learning more and more that I need to find ways to include our daughter into things instead. Anytime we’ve ever forced ourselves to push through a social situation we thought would be difficult, we have found most often that it is rewarding and our daughter usually enjoys it.

What I’ve also realized is that it is us parents that tend to stress over these social situations way more than our kiddos seem to.

Ultimately, I’ve come to the conclusion that if we don’t get our children more publicly involved, especially at a young age, the world will never learn to see them like we do (amazing).

Please don’t think it is lost on me that some people just can’t do this. I know there are some conditions that merely getting out in public puts a child’s health at risk or exposes a child to sensory overload. I’m a firm believer in parental intuition, and parents know best in these type situations.

My thoughts are merely for those parents who have ever sat out something because our children are a bit different and don’t fit the norm. I certainly can’t judge because I’ve been that parent… more than once.

But I think sometimes we have to change our own point of view in the effort to change others hearts and opinions.

My most recent revelation in this special needs quest is that our daughter’s limitations should not hinder her from trick or treating on Halloween. Instead we need to use this night as an opportunity to embrace this life she has been given and share in the fun with our friends. So, for the first time since she was born, we are going trick or treating on Halloween!

What’s Not to Love?!

Now, when I’m asked to describe myself, the first thing I tell people is that I’m a mom to an amazing three-year old daughter with special needs.

However, that has not always been the case.

Several years ago, if you would have asked me that question, the first words I would use to describe myself would be an attorney.

It is a career I worked hard for and am very proud of.

One of my favorite areas of practice has always been estate law.

And while I was pregnant with our daughter, I helped a special needs mom gain guardianship over her adult daughter that has Cerebral Palsy.

As part of my case prep we discussed what brought about the medical condition… complications during the child’s delivery.

It broke my heart to hear that my client had a normal healthy pregnancy, and if her delivery had been different, she would not have been sitting in my office that day seeking a guardianship.

It shook me that something so routine could change a healthy child’s life in a matter of moments.

I prayed that night for God to protect our child from this type of situation because I didn’t think I had it in me to be the amazing parent and person that my client is.

I did not think I was strong enough to raise a child with special needs.

Sometimes it doesn’t matter how much you plan, life has a way of taking over and reminds you that you are just a long for the ride.

Three years into parenting a special needs child, and I wouldn’t change it for the world.

It still amazes me how time and experience can change us.

Sure, most days it is not glamorous, but in reality, no form of parenting is truly glamorous.

No one is ever really ready to have child with special needs.

Especially, when it comes as a complete shock from an illness after birth.

When it comes to children with special needs, you mainly hear and see the bad side of it.

But there is so much good too.

To people who ask the question, “How do you do it?” I typically tell them that raising a child with special needs is not bad, it’s just different.

And everyone has something hard in their life they are dealing with … this is our hard.

These days, I wear my, “Special Needs Mom”, badge proudly, and I have truly grown to love it.

My daughter is, “non-verbal”, but you wouldn’t really know it.

One of my favorite things to do is have a conversation with her.

Sure, most of the time I don’t really know what she’s saying.

But you can tell she means it and it is serious.

Then, there are those rare times (that are becoming a little less rare) when she calls for me or answers a yes or no question. Those times give you hope that there is much more to come.

I also love her smile, and something that is fairly new, her laugh.

I wasn’t sure she would ever smile, but at eight months old it started and it is rare to see her without one on her face.

And the sound of her laughter brings my heart pure joy.

It was a sound I did not think was possible.

But now it’s even becoming a regular thing, and that is the best feeling.

Good things also take some adjusting to at times.

Having a child with special needs requires me to be more personal and conversational with people.

Years ago, I rarely talked to strangers and I would never be caught striking up a conversation with someone I didn’t know.

Not anymore.

Our daughter loves personal interaction, and this draws people to her which in turn draws people to me.

But I have grown to love that too. I am so proud of her, and I love to share her progress and accomplishments with others.

It gives me a chance to educate people on things like therapies, speech devices, and wheelchairs.

I’d have to say though, that what I love most about parenting a child with special needs, is that it has shown me time and time again that I can overcome things I never thought possible.

My husband and I both have come a long way from receiving bad news in a PICU room.

It hasn’t been an easy journey, and there is still so much more to go.

But it has been the best journey of our lives, and I could not image our life without our daughter.

She pushes us every day to be stronger and it is inspiring.

Who couldn’t use a little more of that in their life?

I think about it sometimes and wish I could go back to that conversation with my client several years ago, knowing then what I know now.

I would make a point to tell her what an awesome mother she is, and this time I would not take pity on her because I now know that she doesn’t need it. I would also pray a different prayer that night.

I would still ask God to protect my unborn child, but I would also pray that he guide me to my inner strength that I now know I have, to raise a special needs child if that is his will.

The most rewarding part of being a special needs parent is the capacity at which you find yourself able to love and the compassion that it allows you to have for other.