Josie

The afternoon of March 18, 2015, we were driving home from the Marcus Autism Center. My brain was pulsating with a stress migraine so severe I could hear the pounding in my temples and at the same time my thoughts were racing as it dawned on me that the future hinged heavily on what decisions we made immediately for our son. I wasn't even sure what those decisions were.  I was plagued with doubts. Could I do this? Could I be THAT mom? To advocate. To educate myself. To intervene. "I am not your girl, God," I kept thinking. "Why would you entrust such a responsibility to me. Wesley deserves someone more Type A. It's not me."

Andy and I were silent, but I knew we were thinking the same thoughts. In our entire marriage, we have never had a more silent or more deafening car ride. 

I will give you some relief and say, I haven't felt anywhere near that devastated since that day. In fact, I refuse to look at any part of our journey with Wesley as devastating. Just so you know…we're great.  He's great.  He’s our precious Aspie. And he's smarter than all of you reading this…combined. So there.

But back in March….In the midst of all I was trying to recollect from the advice we were given that morning, words like "socialization" and "involvement" kept popping back into my brain.  I was handed pamphlets and told to sign up for classes that I would never be able to afford or get to since I had a job and I just didn't know what to think, feel or who to call. I was trying to recall all the details I was told with no written report in my hands since it wouldn't arrive for a few weeks. What had they just said to me? I already felt like I was failing my child.   

But I did recall one thing from that day…it was a big one. I knew I had to create opportunities for socialization. So during that car ride, I began to make a mental list of all the things I could do to make our world more social. For Wesley.

And that's when the weirdest, most off-track, this-will-never-pass-through-the-Andy-level-of-approval, I-think-I-have-been-drinking, thought came into my mind. 

We need a dog. 

I was convinced of this. As ill-timed as my ludicrous plan was, I imagined all the social scenarios a dog would create for us.  

Looking back on that day, I am highly amused that of the 25 hours of therapy, speech intervention, preschool classes and play therapy…my one take away was the full conviction that the Turners needed a dog. Not once did anyone at the Marcus Institute tell us to leave there and go straight to the pound. But that was indeed what I was thinking. 

By the time we got to our exit, I'd gotten up the nerve to mention it to Andy. So the very first thing I say to my husband after the day we had had was my firm belief that what this situation really needed was a puppy. A chewing, barking, pooping puppy. That's what I said. To a man who is highly allergic. Well played.  

I'm surprised he didn't drop me off somewhere along the road. I knew my husband wanted no part of a dog.

Here's a little background on me and the animal kingdom. I hadn't owned a dog in 25 years. I liked dogs but I didn't love them. I like petting dogs. I like looking at cute pictures of puppies. But in our entire marriage, I had never even indicated that I wanted a dog to my husband. The thought never crossed my mind.  Mainly for three reasons.  John Paul, J.J. and Sandy.  I had had three dogs in my lifetime. 1.) John Paul - my mother's poodle who was brilliant and devoted to her. The dog didn't care anything about me. 2.) J.J. - the psychotic poodle we got after John Paul died who looked like John Paul but was actually quite crazy. Also - chased cars. 3.) Sandy. Whenever I would open the door to let Sandy out, I would run to the left and Sandy would run 47 miles to the right. I would spend the rest of my life trying to get that dog to come back home. Also - chased cars AND stole food. 

So…I didn't have much of a Lassie childhood. Besides, my sister had three dogs. We could always visit. 

In fact, I was so blah about dogs that if you had told me that your dog had advanced medical issues and was going to need to be put to sleep, my first thought would have been that THAT decision was going to save you so much money in the long run. 

I know.  I'm not proud of myself.  

Besides, I'm in the midst of being reformed and I owe the entire dog-owning world a gigantic, humble, eyes-to-the-floor apology. I am ashamed. So so ashamed. 

Needless to say, Andy thought dog therapy was a bit of a crazy first response to our day. I so didn't blame him. The idea was 50 shades of crazy. 

I put the thought aside. It was not a good idea. 

But in secret, I couldn't shake it. I wasn't sure if there was a reason for this or if I might be one of those people cracking under the pressure of recent stress and my only symptom was hair-brained ideas like complicating our already complicated life with a dog. 

Sometime in the next three weeks, I was outside playing with the boys when a woman walked by with a medium-sized black curly dog.  I am not in the habit of noticing dogs, but I am in the habit of talking to absolutely every person I see. Always. No exceptions. Amen. So as I was meeting this new neighbor, I noticed the dog, Oliver, watching my kids. Oliver's person told me that he was interested in playing with the kids, would that be okay?  I said that it would and I watched as this rather large dog was released to play. I was amazed as I watched him dance around my kids wagging his tail and being so gentle I couldn't take my eyes away.  Dogs are supposed to jump on people. Oliver didn't jump. He was so agile and careful, but completely enamored with the boys as they played. I was completely taken by this large dog's demeanor. Oliver was amazing.  

I hella NEEDED an Oliver. STAT

I found myself asking about the breed and the breeder. THAT, my friends was when I was told that Oliver was an Aussiedoodle and was bred by a woman in Blairsville who has three autistic sons and found this breed to be amazing as service and therapy dogs.  

I froze. 

What? Stop talking to me. Are you serious? What-you-talking-'bout-Willis?

I didn't say any of these thoughts to her because…well, crazy shrieking neighbor lady.  But see...I do believe in divine situations and I couldn't see how that wasn't God setting something amazing up for us Turners (just wait until I tell Andy what God is doing to try to get us a dog). 

The next day, I called the breeder and we spoke for an hour. An HOUR. We were new besties. Actually she was letting me in on the abilities of these dogs to help in stressful situations. I had no idea that autistics could benefit from service dogs. I had just been hoping for a source of conversation in our home and a reason to be running around and interacting…but this…do I even need this?  I wasn't sure, but I was so excited.  

Surely the path was going to be made clear in the next few days…we'd come this far. 

Three weeks after our visit to Marcus, my son broke his femur.  Let me correct myself…I broke his femur. It was a freak fall. It was, of course, not intentional, but the mommy guilt train is not interested in details…it only sees the cause and effect of the injury. 

My son was in a body cast for seven weeks because of me. He didn't deserve this. What more can we heap on this precious two year old? I was devastated and I spent many nights reliving the fall in my mind.  

Kid with broken femur, guilt-ridden mom trying to keep it together. Dog forgotten.

We spent 7 weeks caring for a child that couldn't move. Couldn't go to therapy. Couldn't socialize. Couldn't go to school.  Isolation. Isolation. Isolation. This was NOT what he needed to thrive. 

Cast eventually came off and we spent three more weeks getting him to walk again. Then it was time for IEP meetings and new schedules. Through all of this my son was amazing. My husband and I grew a lot closer through our recent trials of Marcus Center and femurgate and we moved ahead. 

I began to read up on Neuro-diversity and how my son's gifts should be celebrated. He had an uneven skill set and while we worked with him to answer simple yes or no questions, I would do a double-take every time I walked into a room where he had spelled words like "lopsided" and "pumpkin" in scrabble tiles.  

I struggled a lot internally as a mom over this last year. Who to tell about Wesley. Who not to tell. How to handle responses I didn't like from people who didn't understand or just meant well. How to be proud of my son without attaching a disclaimer or limitations to him. How to make peace with something that I was also actively fighting.  Where to place any of this neatly on a shelf in my mind...He's going to be a code breaker for a special government organization one day…who cares if he gets his pronouns confused. 

Life went on.  

Then, as I feel God does sometimes, he brought my crazy idea…my insane first thought in a crisis, back into my life in the last few weeks. I was anticipating that we could swing a dog by summer...

When God is ready though…move over.    

I'm here to tell you that within a matter of 4 days…we had our Aussiedoodle. Every obstacle fell away. Every. single. obstacle. All of them. 

The breeder had one puppy left from a litter that was perfect for us. She was a little older so she was cheaper. We worked out a time to drive to Blairsville to get her. My sister (could NOT have made this happen without my amazing sister) helped outfit us non-dog people to bring home a puppy. We were even able to make her an early gift from Santa. 

And Andy. My wonderful husband. The man that along every step of this journey with Wesley was 100% onboard. The man who trusted my judgement. The man who was not tempted by his own ego to push away the nagging thoughts in the back of his mind. The man who goes to work early and stays late. The man whose life was a lot calmer without a dog. This man…told me to go for it.   

The plans I have for this sweet girl are big. Maybe they are unrealistic. But I prayed for this dog for nine months. There were nights I would say to God, "I know this is crazy. I don't see how this can happen. I have a terrible track record with training dogs…but I want this. I want this for Wesley. For all of us." 

And He made a way. 

And so now we have Josie…and we are reformed. 

We are dog people.

The "A-Word" - Part 2

I wrote a post with a,"to be continued…," attached to the end of it, and I have been debating on whether to do a formal update.  As I've thought about it and also after being SO impatient for subsequent Back to the Future installments, I know the struggle and I need a proper follow up on our visit to The Marcus Institute (for the THRONGS of readers I have). You guys reached out to me in amazing and loving ways and you just simply don't know how much it has meant.  We feel so loved.

How to give this update has been tricky to figure out.

Because, here's the thing - I don't really have any intentions of blogging about Wesley's journey. I'd rather go back to posting humorous essays twice a year (the rate I'm currently going) about how I can't find my vacuum cleaner and how much I hate Moon Dough (like it's awful).

There comes a time when your child stops being an extension of you and they have their own secrets and stories to tell. In other words, one day, this ceases to be OUR story and becomes WESLEY'S story.

And I'm not here to be his spokesman, I'm here to be his advocate.

Inspiration for writing for me is usually born from a form of frustration and a passionate desire to share my experience in the hopes of connecting with people.  It's how I get my random thoughts in order too. Usually that's with humor. But maybe something I'm navigating resonates with someone out there who feels alone. With Wesley in particular, it has been a lot of connecting with people I already know who have walked this journey and have given me critical pieces of information that I honestly don't know I would have had without it.

- The former coworker who introduced me to Babies Can't Wait.
- The old school friend who's son sounds so similar to mine and offered me paragraphs of information about what I was about to encounter on the path to possible diagnosis.
- The people in the community who have embarked on IEP journeys in the schools systems of their own and have lent me some great advice.

I like these connections. I find the camaraderie to be comforting and the advice and guidance to have been critical in all the steps we've taken to this point.  This year has been emotional and confusing and I have learned a few things along the way with a LOT of help.

But I also want to be careful about shining a light on a member of my family who will grow up one day and read this on his own. No judgement meant…just personal feelings.

Nevertheless (is that one word…cuz, I feel like it should be like five), at our appointment, it was determined that Wesley is smart, sweet and perfect (obviously) but that he exhibits a few red flags of ASD (Autism Spectrum Disorder).  We will go for a full day of structured testing in a few weeks where we will receive our special "map of Wesley," a diagnosis (if it applies), a game plan for intervention and a ceramic dalmation (just kidding…there's no dalmation - I know, I was disappointed too).

This appointment was VALIDATING - They acknowledged that he was a tough case to call.  The appointment was REASSURING - I was finally told by an expert that up until this point, I truly HAD been doing everything I could.  The appointment was POSITIVE - because whatever we call it, Wesley is and is going to continue to be just fine.

At first glance it appears that he's so engrossed in his world of letters and numbers and his own play that he tunes out. Not always, but enough to miss out on some important social and cultural learning  you pick up in your life (seriously, I'm pretty sure I'm doing this very same thing when I play Candy Crush).

Then we come to the label. "Autism".  We won't know if we claim that word until the 18th of March. I have to be honest that at this point, I don't really care if we do or if we don't.  Wesley is a person, the label is merely a means to an intervention.  A classification that is incredibly beneficial but fails to adequately describe the extraordinary son we have.  If you have an hour or twelve…I'll bore you with the amazing-ness of my boys.

Still there is that word. Autism. It can mean a lot of things. If we come to own that label, Wesley lies on a seemingly very high-functioning part of that spectrum. That fact is kind of important and kind of irrelevant all at the same time.  There are families who have kids who lie on a more challenging place in that spectrum.  We could have very easily been one of those .  Those kids are just as special and important and unique.  And I feel weird celebrating Wesley's placement for any other reason than simply his road in overcoming vulnerabilities might be a little easier.

There is a very good chance that he could get a diagnosis now and then not meet the criteria for it in a few years. A lot of great research suggests that THAT is due to early intervention. - This is why I beg, plead and implore you to put aside your fears and seek out answers if you see anything that makes you wonder about your own children. The earlier the better. If you need support - I'M HERE - but don't stay paralyzed by fear and don't get discouraged.

There is also a chance he doesn't meet the the criteria to be on it now.  We simply won't know until he gets structured testing.

The truth is, Wesley now is no different than the Wesley that I held on September 11, 2012 (all 10lbs of him). We've just had the pleasure of getting to know him better.  I'm the one that has had to do the changing.  I've had to come to terms with a word that, quite frankly, used to scare the hell out of me.  I've had to open my hand wider…to not clench so hard because my expectations of my kids are laughable. They are their own people, with their own strengths, with their own weaknesses. They are never going to be a reflection of my plans for them - at least I hope they won't.  I am here to merely help them unlock the people they were designed to be. To teach them about life. To lead them to a loving God.  To keep them from juggling knives.  To BE THERE for them as they grow up in a world that is strange and confusing and cruel and also wonderful. To help them understand that they are a contributor to this world and not a victim of it.

So while Autism is a spectrum...the love of the parent with a child with Autism…or any other special need - is not a spectrum.  The trajectory of all of our children's lives has to be their own. We must help them blaze their own trail…in their own way.  That trail may look extraordinary.  That trail may look ordinary.  That trail may look strange or sad to others.  But whatever form it takes, the potential to do great things on that trail is not something that can be measured by anyone.

In closing, please forgive me if I don't answer the big "Is he or isn't he?" question on the 18th on the blog.  It's not that I want to keep it a secret. It's merely that it's no longer the point. One day Wesley can choose to keep that fact to himself or wear the descriptor proudly. If you want to know something and we are Facebook friends, feel free to ask me, as my mother would say, "behind the wall," in a private message. Or email me: justpeachy1123(at)yahoo(dot)com.  I am thrilled to share my experiences, hear great advice or know that we are being thought about even a little in your busy lives.

The “A-word”

On February 24^th, we are taking my youngest son, Wesley, to the Marcus Autism Institute to see if he needs some further testing. So as you read our story, please know that I don’t know if Wesley is on the spectrum. I am writing this because I think it’s time. I am writing because being in Autism limbo is confusing and maddening. I am mostly writing because I don’t want anyone out there to be afraid to explore a potential diagnosis or intervention because of fear or because someone tells you they are too young. I have already begun to see the benefits of early intervention.    

In February of last year, I noticed my youngest standing about an inch away from license plates…a lot.  He was getting to an age where it was becoming apparent that his speech was delayed, but honestly, that was the least of my worries.  It was his fascination with letters, his constant counting and his tendency to isolate himself that secretly terrified me and kept me up late Googling.  After failing the 18 month MCHAT (the autism screen), my pediatrician recommended first addressing his chronic ear infections before jumping to any neuro-conclusions (totally made that word up). 

So within a week, he had tubes put in, adenoids removed and allergy testing done.  In terms of ear infections, it was a game changer. To date, he hasn’t had an ear infection in almost a year.  Also, he began to isolate himself less, he attempted more words, his balance seemed to get a bit better.  What remained was his obsession with letters and numbers and no real interest in communicating.  Always sweet, giggly and laid back – I didn’t see anything that I thought was considered “on the spectrum”.  I mean, I have a Masters in Googling and what not.

We began the Babies Can’t Wait process for his speech delay.  This is a state offered program that offers a free evaluation for kids showing delays. If you qualify, the therapy is affordable. I would recommend it to ANYONE in the state of Georgia.  Wesley got evaluated in July, qualified for the program and we began speech and play therapy in August about a month before he turned two.  At the start of Babies Can’t Wait he knew 13 words and ten of them were the numbers 1 - 10.

A few weeks in he had a language explosion.  He went from a few words to all of them.  I began to relax. Autism left my mind.  An idea that had once terrified me seemed preposterous now.  He was talking like crazy. But what I would soon realize is that he was doing more repeating than communicating.

I went to his follow up ENT appt.  When it was over, the doctor looked at me and asked if I thought my son’s behavior was normal.  I felt my heart sink to the floor, but I tried to play it cool.  I knew he had some quirks.  We ALL have quirks. He told me to make an appointment with the Marcus Institute. Two is a good age to go I remember him saying as I tried not to cry.  

I did end up crying in a parking lot to my husband as I was giving Wesley to him to take home so I could go to work.  He grabbed my shoulders and said words that I won’t ever ever forget, “None of this changes who he already is, Rachel. THIS is not cancer. THIS is not fatal. WE can deal with THIS. Whatever IT is.” 

I love that man.

Later that week, I relayed the ridiculous interaction with the ENT with his play therapist.  I looked at her and said, “I mean, are YOU watching him for Autism?”

She nodded her head.

Wait.

She nodded her head?

OMG I have given my child Autism.

A few weeks later, I took Wesley to an after-hours pediatrician.  He literally wouldn’t talk about Wesley’s upset stomach because he was too busy commenting on his toe-walking, on his lack of eye contact. All I wanted was a prescription but he wanted me to know that Wesley had some characteristics of a child with Autism.

I wasn’t sure how to process this. It was now October and I had been afraid of Autism since February. All the people who knew him on a medical/therapy level, told me he showed characteristics. All the people who knew him on a personal/educational level told me he was a typical two-year old. I was exhausted. I was stressed out. I was so done thinking about it. Every time Wesley did anything, I would think to myself, “Is that an autism thing?”

When really, it was just a Wesley thing.  

And as my wonderful girlfriends reminded me on a desperate FB thread I started, Wesley was the happiest kid they knew. 

He wasn’t a bit upset about what we all thought HE had.

It was around that time that I realized he knew the alphabet. It was the next week that I realized one night he was sitting in his car seat spelling the word train. He was barely two. After train came snow, stop, Wesley, frog, lion, dog, dad, ice, key, etc.  It was fascinating. I soon counted about 40 words that he could spell, identify when spelled and read off of a page. Trust me when I say that I wasn’t working with him. He was spelling words my 7 year old struggled through.  His play therapist called it Hyperlexia…and it can be a splinter skill of autism or it can be its own thing.  It was the one bright spot “red flag” wedged in the am-I-doing-what’s-right-for-my-child world I was in. 

Wesley is a bright, sweet, funny, laid back and happy kid.  He’s goofy and silly in ways that leave Andy and I in stitches. He cuddles with me where my first, I am in charge of the world, child never did. He sleeps like an angel, rarely throws tantrums and is never happier than when we are leaving Target and he can scream out the numbers on the check out lane signs.

We have heard the word “aspergers”, “mild” and “high-functioning” as it relates to him. The statement that took all my fears away was when I was wavering on this Marcus appointment and my pediatrician looked at me and said, “Rachel, do this now.  Have him evaluated now. If he does have Autism, at this age with intervention, I’m not going to tell you he can be cured of it, but he can overcome it.”

Andy and I are in a good place with this. We have had time to digest and discuss and agree on what’s best for Wesley.  We’ve been doing it for a year. We have adopted the mission statement that we will do whatever we can to eliminate frustration and roadblocks for learning long term.  If that means Wesley gets a label, then so be it. We have also discussed the possibility that we will go to Marcus and pay money for people to tell us that Wesley just doesn’t really have anything to say to us. Both would be fine and neither would change all the things about Wesley that we already know.  We all have challenges in our life that we have to overcome.  Wesley is no different.

I have had a wonderful community of people reach out, pray and simply share their input.  In fact, I have learned the most helpful things from other people who have been there and done that.  That’s why I’m unafraid to share this. 

If Wesley is on the spectrum, we will have a lot of things to learn and decisions to make.  I am a bit overwhelmed at the thought and so I would appreciate good thoughts and prayers on the 24^th that we will listen and understand what we are being told.

And pray for sweet Wesley. His best interest is at the forefront of our minds and hearts. God chose our two boys to be ours and, like all of you, we are in this for life. He is one of two of the biggest blessings we have ever been given. Andy and I would do anything for these precious boys. 

Through this process I am learning to allow fear its due time but let resolve quickly overtake it so you can focus on doing what’s best for your children and your family. 

And in all things, we thank God for his presence in our lives. 

Rachel 

A Night Without the Kids

You get back to the house after dropping your kids off with grandma.  New Years in the house by yourself.  You have been looking forward to this for weeks.  Tonight you are going to get caught up with your life, have the quiet to think to yourself and get really ready for 2015.

Walk into the house, remove your coat and savor the silence for about 10 minutes. You don’t know what to do first.  You are overwhelmed with options. You have a running bucket list of things you want to do when you get control of your home again and you literally don’t know where to begin. 

But you are excited…because the undeniable truth is that at some point tonight you, my friend, will get to pee alone.

Tonight you are going to have the quiet to finally whip the house into shape.  Christmas decorations will come down. You will make your purge, donate, return bins and get a jump on that resolution to declutter your home for good.  It’s going to be heaven. But you’ve got time for that…you need some downtime too.

Maybe you’ll watch some tv first. Who are you kidding…it’s time for those yoga pants. Go get them on if you aren’t already wearing them…always.

You walk over to the remote control and hit the “on” button.  Dora immediately begins screeching orders at you. “Not this time, you pint-sized, screeching like nails-on-a-chalkboard, type A banshee.  You have to find your own crap.”  You begin flipping channels.  Several hundred channels of options and you can’t wait. 

Maybe some House Hunters? There’s a marathon on. 

Or perhaps you’ll watch a movie with a lot of profanity…just because you can. 

You could watch the 24-hour crime show channel.  Ring in the New Year with a little “Momsters: When Moms Go Bad.” 

You scroll the channels for a full 15 minutes looking for something to catch your eye. What the heck did you used to watch?  At one time you had complete clicker control, and you were an expert at show choosing.  But now you act like you just arrived in this century and you’ve never seen television before. 

You finally settle on the evil mom show.

You grab your phone because tonight, is the night.  You will play candy crush at full volume. Without the fear of little feet running up behind you and plucking it out of your hands yelling for the Super Why! game. You settle back in your chair of choice, put your feet up, half listen to moms going bad while you crush candies. 

At some point you’ll get into the hummus but pace yourself dear…the night is young.  It’s only 5pm and you won’t start getting drowsy for another 45 minutes at least. 

Even though you are enjoying yourself, there is that voice in the back of your head reminding you what a huge, lame waste of time all of this is. 

It’s a good thing we don’t listen to that hussy. Crush those candies, girl.

The next few hours are a blur.

You decide to get going and go through some of the kids’ toys while they are gone.  Got to make room for the mother load of incoming Legos and V-tech cars and tracks that are sitting in the hallway from Christmas. You'll throw out toys your kids will never miss and have that playroom looking Pinterest ready in no time. 

I mean that was the intention.

At some point you realize you are now just sitting in a bean bag chair in the playroom, playing slots on your tablet and watching moms go bad…still.  Someone ordered Jimmy Johns.  It must have been you.  Taking bites in between spins, you resolve that you are going to get to the next level of Wizard of Oz slots tonight if it kills you. 

Clearly you’ve mastered the art of time suckage. But any minute you’ll get up and start cleaning and organizing like Martha Stewart and June Cleaver. 

Next thing you know, you are waking up on the couch. There’s a half eaten bag of pita chips, and an open container of hummus on the floor beside you.  It’s 6:30 in the morning on the first day of 2015 and you are having a super lame, non hangover “Hangover” experience as you try to piece together your super wild night. Christmas decorations are still up, your butt print is in the kids new beanbag chair and every tv in the house is on the Investigation Discovery channel. 

You get off the couch wide awake because the fact that you had the freedom to stay up late and sleep in doesn't mean you are cable of doing it anymore. 

You wonder how the kids are.  Gosh, you miss those little guys. 

Humans love

Ugh.

Lately it feels like I need a serious pair of waders just to trudge through the bad, the very bad and the devastating. 

Suffering. Pain. Loss. Inexplicable grief. It’s everywhere.

A grown son, just starting out in life, lost in a car accident today.

A couple, carrying a baby with a devastating prognosis, still making the most of their pregnancy milestones while praying for a miracle.

A beautiful girl robbed of the future and abilities, with parents who are determined to make the most of their remaining time.

It’s everywhere. And it physically feels heavy.   

It doesn’t need to happen to you for you to feel it.  

I’m always moved by the love that immediately shows up and surrounds a family who are watching something tragic unfold in front of their eyes. Their worst nightmare coming true. It’s like I get so disenchanted with humans at times but then I see people carrying pain with their friends. Feeling it with them. They drum up support. They anticipate the needs of their loved ones and get on the ball to meet them.

We are in this life together and in times like these, we have two choices to make. We can conserve our love or we can share it. 

I have to say…I see an awful lot of sharing going on around me right now.

It’s a beautiful bright spot in the midst of overwhelming pain.

Humans don’t leave behind their weak. They pick them up and they stay strong for them. For as long as they have to, they carry burdens alongside those they love (and if you’re from the South, they bring you chicken casseroles which is pretty darn nice too). 

I’m not calling any person weak here. People going through a difficult time are most definitely not weak…but they are singularly focused.  How could you not be?  They are emotionally spent. And they are putting the needs of the family member suffering more in front of their own than they ever have in their lives.

So the point of the post – well, I wanted to write out my feelings (which always helps me sort through them) and I wanted to share an opportunity to support a family that I know going through something unbelievably hard. 

Layla is four. She was given the unbelievable blessing of being born to a wonderful loving family. Her parents adore her and she has an amazing big brother.  After spending an extended period of time trying to understand Layla’s seizures, they were punched in the gut with a diagnosis that no parent should ever ever ever have to get.

Like – excuse my bluntness – but this diagnosis can kiss it.  

Here are her parents standing in full armor ready to fight whatever battle needs to be fought to heal her – but there’s no battle. There’s no fight. The outcome is out of their hands. 

I cannot begin to comprehend that level of helplessness.

Friends. I’m asking you to help if you can.  Because the thing is…the battle now has to be this.

To make the most of the time they get.

All those outings we plan to take our kids on one day.  The Disney trip we are going to wait just a few more years for. Those plans we make for the future.

Future.

They don’t have that.

Please visit their website and if you can give, awesome. If you can’t, maybe there are prayers you can offer up.  Or maybe, you can look around at the people in your own life and community who are dealing with a monster that they are struggling to defeat…and you can share your love and strength with them. 

Take their hand and be what I know humans to be…compassionate and loving people who surround the suffering with love and support.

To this sweet family - I want you to know that I am  praying for you as often and intentionally as I can. 

To the sweet friends of this family – you guys are amazing and I am moved by your love and care.

And to that sweet little girl bravely fighting a battle very few people have ever had to face…you are a Warrior Princess and there are a lot of people who want to help you cram all the life and love possible into these precious years. You have touched so many already. Stay brave, sweet girl.

Click here to learn more about Layla.