Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more.

We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it.

We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator.

This is what I can tell you - there is no recipe. No secret sauce. None. What I did do - I watched others, listened. If there were ever a secret sauce, that would be it. Watch what others do. Watch your kids. Listen to your kiddos in the passing, when they play. Listen to their actions. Listen to passing strangers. Ignore the static. Find a way to make a disability a source of resilience and grit. Find your purpose in it all. The recipe is somewhere in layers of experiences that hit you like a train, and all unexpected. Maybe ask for opinions (not advice) and do what your gut tells you.

But, there are moments in time, they stay at my forebrain, just like these moments happened today. They have been pivotal to me in this crazy world of disabilities. Maybe, somehow, just maybe, helped to mold what little bit we could mold as parents.

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When Walker was very small, he came to me one day and asked in that sweet sad little boy voice, "Mommy, is Ivey more special than me?" I sat down on the floor in front of him and asked "Why do you think that?"

His tiny sad voice explained that I say Ivey is special more often than I say he is special.

Of course my instinct was to explain to my tiny human why he was misunderstanding what I was really saying. But - I held my "you're misunderstanding" words. He was little - his understanding of the word "special" was very linear.

We had a long tiny person conversation about "why" we say the word "special" when talking about Ivey. She has special needs. Special in her case meant different. Neither Walker or Ivey was more special to us, the word special was just a means to say she is different without hurting her feelings, but in the wake, his feelings were hurt. His heart hurt. What if he hadn't asked? ...... that tiny soul ran off like the world was lifted off his shoulders.......later that evening, we had that same conversation with Knox.

For the most part, with few exceptions, I stopped saying "Special Needs".

I call her diagnosis's by their names. Straight forward. No fluffy labels.

This one moment in time opened a door for the boys.  They knew she was different, but more special, she was not.  Their understanding of her being special was no longer linear.  Today, the word "special" has many layers to the boys, but those are layers I don't understand.  They are siblings.  We are parents.  We get to watch them.  There is a recipe there that only exists between the boys and Ivey. 
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After that incident, I had lots of doubts about parenting these radically different situations. Ivey, no matter what, always needed more. Time and attention have NEVER been equal, it can't be, never will be. Laws of physics apply. It made me aware of how often the boys heard (still hear), "hang-on", "in a second", "wait a minute", "give me a minute", "I'm hurrying (slow as a snail)", "It'll be another minute".... and on and on and on.

Always on the back burner.

The shadows.

Of course people would suggest scheduling time with the boys and not letting anything disrupt it. Seriously? Internally my eyes would roll. Tell that to her next seizure.

I have a friend that explained to her little kiddos that sometimes she had to love one more than the other, or at least it would feel that way. It was a brilliant analogy. I tweaked it a little here and there and used it with the boys.

Her example was skinned knees. If one fell and hurt her knee, she would have to tend to the sister, clean the wound, talk sweetly, give kisses, and essentially, give a little more love to the sister that day. BUT, she doesn't love the sister more than the brother, just sometimes, one is going to need more love. Other days, the brother may need more love. Over life, her children may need her, but she will never love one more than the other. They are both loved equally, but even as teens and adults, one may need a little more love for a moment.

The boys have heard that explanation of love their whole lives. They are loved. Equally. Sometimes one needs a little more - more. The more may feel like more love, but it's not, it's just more. Not more special, more love, or favoritism. Just more. And, the more is temporary. With Ivey the "more" hangs on longer, but never ever does it equate to more love (or more special).

And yes, we have had the conversation with Ivey. Somedays the boys need more too. She has to do her part. She's not a fan. She is the princess. But that's another story for another day. And.....they boys created that princess problem :)

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It's a heart wrenching memory, but our first experience with hatefulness and internal ugliness set me on a path to mold the boys to be her protectors at all costs. It was my first lesson in intolerance and the world we would face outside of our bubble. It was also my first lesson in fate, faith, and trust - in the humanness that also exists outside of our bubble.

It's the story of taking the boys out all by myself with Ivey, for the very fisrt time, after her trach. Ivey was maybe 18-months old, Knox maybe 4ish, and Walker 2 something. Did y'all just forget how close they are in age?

We were in Chic-Fil-A in Cartersville. I was so proud of myself. We made it that far in the car without needing to suction the trach. I managed to corral all three out of carseats. Ivey into a stroller with apnea monitor, suction machine, and feeding pump. We ordered and somehow got settled into a seat. It was a good day. We had gone somewhere alone, a little roadtrip heading to the outlet Mall, and made it to the first challenge.......

Then those mean elderly women sitting next to us made their presence known. One piped up loudly, expressing her disgust and dramatically telling the others how she could not possibly sit next to "that". "That" being my daughter. She went on.....she could not stomach her food looking at "that". So they moved to another table on the other side of the restaurant.

The boys were little - Oblivious. The people sitting around us all knew what just happened.

I grabbed all three and headed to the restroom. Went in a stall. Cried. The boys were upset because "Mommy is crying" and no idea why. I never knew people could be so cruel. A part of me hardened.

I opened the door to the stall, and there stood a girl close to my age. She said, "Hand me the baby. I will take the boys back to let them eat. You get situated and come out when you are ready. I heard them."

I handed all three kids to a stranger, Ivey included, and she walked out the door. A complete stranger.

Long story short, the stranger happened to have a daughter with significant disabilities. She wasn't with her that day. We are still friends to this day. This type of momma-ing has unspoken rules and bonds. This one moment in time had so many life lessons for us. So many.

That day we started working on our conversations about people who stare. They grew to conversations about out right cruel people. How to engage them. How to smile back. How to ask if they would like to meet Ivey. How to not be embarrassed of Ivey's physical differences. How to let me know if they felt uncomfortable. How to be her brothers and all it encompasses.

In all transparency, there's not a day we leave this house that Ivey isn't stared at. It's alot somedays. Alot. A whole lot. Did I say alot?

Over the years I have watched the boys lean into life outside of our walls. On good days, they took her to the world. On the days when it was all too much, they would read the room and I would watch them position themselves between Ivey and the starer. Other times, I have watched the boys basically circle around her like a shield. When all other teenagers were worried about trivial teenage angst, they carried her cross. Our conversations have always been about holding our head up and stand next to her with honor and pride. She is our gift. She has given them (us) the gift of GRIT all wrapped up with compassion and grace. (As I age, so loosing the two latter qualities... less compassion, less grace.)

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When Ivey was around 4 or 5 and in GSAP (program for kiddos with vision and hearing losses), GSAP held a weekend family event for families in Georgia. The boys were around 5 and 7, maybe a tad bit older. While Ivey was having fun in a GSAP activity and the boys in the magical SIBSHOP, parents met together to make connections and talk.

So much of the talk from parents was about their children and how the siblings wanted nothing to do with their sibling with disabilities. I took lots of mental notes that day. Several parents had expectations that siblings would do chores in context of sibling with disabilities not being able to. (Ex) Folding and putting away the siblings laundry, feeding the sibling, or giving breathing treatments. There is more but in gist, what I observed was several parents whose children held great resentment toward their sibling with disabilities. These were elementary and middle school aged kiddos. I panicked. Could they resent her?

What you will hear me say to the boys. They have heard it most of their lives. I've said it until I'm blue in the face...This is the core of our family.

"God gave us Ivey. He gave her to our family. All of us. She is our responsibility as a family."

God gave her to our family. God gave her to Matt and I as a daughter. With that, there lies responsibilities that we share with Ivey as her parents. Those parental responsibilities are NOT the boys responsibilities. God gave Ivey to Knox and Walker as a sister. God gave Knox and Walker to Ivey. Their responsibilities are those that only exist between siblings. The line is drawn there. No exceptions. As a family we take on the extras that come with Ivey. But the responsibilities are very defined.

Now the extras. Both boys have taken on responsibilities that far exceed the responsibilities of their ages. They can work a feeding pump. Use a suction machine. And God bless, they are seizure experts. They know a unique communication system. The list of extras goes on and on.

These things they learned over time and in their time. We taught them. They live with a feeding pump. They should know how to use it and why. It has never ever been their responsibility to know or maintain the feeding schedule. Overtime, if the pump went off, they on their own would go pull up a flush and unhook her. Today, if it's time for her to eat, they hook her up. Sometimes I ask, sometimes they just do it. But it has never been a chore or expectation. If she needed suctioning, they would go get the suction machine and suction her. In the heat of the moment with a seizure, they learned by watching, to go get the suction machine, run grab emergency meds. Today, if Ivey has a seizure, the boys run toward her as quickly as Matt and I do. Was it ever their responsibility? No. Overtime they became part of her team. They took on her "special" when they were ready. They took on their own unique roles. God gave her to all of us as a family. Over time, God has led them to where they need to be in her world. Part of that has been taking on more of her in their time and their way.

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There are many more moments that I feel set us on a certain parenting path. So many memories.

The secret sauce is a just that - a secret. I don't have the secret. Maybe the boys and Ivey do. I have a list of memories that seemed to be importanat and pivotal in their moment. As crazy and organized and regimented and militant as our home is some days, on top of the mass chaos, I think Ivey and the boys had space to be brothers and sister. Just brothers and a sister being siblings in their own unique way. As for parenting .....

I get the phone call, "Mom have y'all left yet?  I'm out of class."  

Me:  "We are at the gas station."

"I'll meet you there".  

Two brothers show up, at a gas station, for one more moment with her.  Secret sauce. 

The Surpassed Expiration Date of a Strong Marriage

22 and 3/4th years. Every word, and more.

We were told in the first 2 weeks after Ivey was born, in the midst of the chaos of her and having two toddler boys at home - that our marriage would likely end in divorce. Most special needs marriages do.

Special needs marriages are a section of divorce happening at a higher rate than most- yet, overlooked by most. Still, someone felt compelled that we know that information during such a life altering time. It was an added layer we struggled to process, along with many other devastating blows. It scared us beyond belief. We were clinging to one another.

Over the years, we have pushed the limits, the barriers. We have slept in the same bed, for weeks separated by miles and hospital walls, with nurses in the next room in the sacred walls of our home, and now, with our daughter tucked away in her own bed in our room. We have hung onto thin air at times. And, we have held on to each other.

We were told in counseling, in our darkest days, we were merely functioning as roommates. Still, we were functioning. We held tight to that. We learned how to fight our way back to one another, both figuratively and literally.

Special needs marriages are not for the faint of heart. We stood starry eyed at the alter with no indication the direction our marriage soon would go. Our rector talked to us about many things that would test our marriage, but a child with a disability was not one.

We had no real understanding how the vows we made would be tested or how they would save us, that love would require more work than we could possibly imagine. And sometimes, we stayed because we were too exhausted to make any big changes. Other times, we stayed out of commitment and loyalty over love. Still, love was there. But love comes in many different forms, it's not always a noun.

Having a marriage that has surpassed the expiration date of most is a milestone in itself.

I don’t know if we exhibited a good marriage or a great marriage for our boys. Time will tell. But, I do know, we were and are an example of a strong marriage. That strength took time and resilience and belief in one another. And, that type of bond is something we can look back on and forward to - together. G.

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I read this the other day:

I have a loving husband.

He’s loyal and trustworthy & helpful & dedicated. He’s hardworking & prioritizes his family. He’s appreciative & considerate & giving & caring.

And we’ve been together for almost 19 years.

We’ve been through it all.

Hard stuff. Scary stuff. Painful stuff. Heartbreaking, backbreaking & groundbreaking stuff.

We’re pretty solid, I’d say. We do what works for us. We argue our points wheen we both feel oppositely strongly about something. We laugh when we find something funny. We share our thoughts & we take turns being the emotionally strong one. We share parental duties & we try hard to find quality time for us. We’ve slept separately & worked on opposing schedules. We’ve lived away from each other & haven’t been able to live without each other.

We don’t share a blanket at night because I like mine & he likes his. I buy his favourite chocolate & he makes me coffee. He fixes my car & I fix him lunch. He’s on my team & he’s on my last nerves, too. I know I’m the same for him. Frustrating and, first. He’s my favorite ‘hello’ & absolutely my hardest ‘see you later’.

None of that though, absolutely none of it, means we’re immune to the strains that special needs parenting puts on our marriage.

My goodness,

it’s hard on ‘us’.

The absolute weight of regular life, regular parenting, regular worries, regular struggles, regular hards,

plus the weight,

of the worries, struggles & hards that come with parenting a child with a disability & severe behavioral, medical & developmental needs, is a lot of weight to carry. It really is.

It’s spins us sometimes.

It hits us & flips us & kicks us around.

It’s cyclical.

There are times when we are a well oiled machine. And there are times when we are tripping over each others’ feet.

Some days we’re on the same page & other days we’re in seperate books.

It’s completely cyclical. Parenting a special needs child & marriage in a special needs home. That’s what this life is. Cyclical.

There are upward cycles & downward cycles.

And with patience & empathy, & love & understanding,

it always cycles around again.

Hang in there special soul parents.

And keep going.

I love you.

Love, Christine x @specialsoulmama

Medically Complex Care Program at Children’s Healthcare of Atlanta

Submitting to Lack of Control

When Ivey was a baby, I literally had drawers and spaces in her closet labeled, everything had a space, a place.  One special friend loved showing off Ivey's closet to newbies coming by for a visit. This level of organization mystified my friend. Secretly, I wanted to go back to haphazardness. 

Justifying why I did this is simple.  At the time, I had friends helping me with my laundry, as were my mom and some night nurses.  With so many people, I found it more efficient, for all of us, to label everything. 

No one had to search or guess where things belonged.  

This approach to find order has only amplified with time.

I have come to accept that being Ivey's mom has brought out a controlling aspect in my personality. For the record, I have always found peace in order and organization. 

It could be described as controlling, maybe. 

Ivey ramped up my need for order. On her hard days, or in times leading up to what I know will be hard, my need for order raises it’s merciless head.  

I have found it is easier to laugh at myself and the glitch in my DNA - 

rather than feeling it is something negative.  I choose not change this aspect of my personality.

It keeps Ivey safe.  She has many medications.  Many regimens. Routine cuts down on errors.  

It cuts out unnecessary extras when getting out the door.

In my mind, it isn't a negative.

  

Yesterday, I read the following from Clearly Stated, and my habits that seek order, 

fell into place.  

Order does bring peace.

The word and emotion in my mind finally found paper.

-Surrender.-

With Ivey's birth, and through the years, I have surrendered to her needs.

I do things her way, not my way.

It was a raging battle at first, 

sometimes it still its. 

It took many tears, and even banging my fists into a few walls.  

On occasion, sitting in my car with a death hold, gripping the steering wheel - 

just screaming.

In the end, I surrendered.

There was no other option. No other choice.

Surrendering to her needs meant, and means, I prioritize life differently.

I find my life circling, and now revolves, in prioritizing Ivey's needs.

There was, and is, no other way.

I am okay with my life priorities these days.  

Unconditional love allows for that.

Agape.

It's not about particulars.  It's about the brutal lessons of prioritizing all of 

Ivey over my wants.

Once upon a time, when these two worlds slammed together, I was called selfish by a family member. See, to have a sense of self care involves a level of  needing others to be present with Ivey. Find balance is an ebb and flow. No passage of time matters. 

But there was a part of me, still is, that sometimes wants to be a regular person.  A person who doesn't know the pains and joys of a child with disabilities and complex medical needs - and all that encompasses. 

You know, like pulling into a parking space and just walking into a store, not trolling for a handicap space. Or making a plan on the calendar, knowing I will be sad when I have to cancel.  

This happened last night when I missed my book clubs first meeting. 

I have found order helps to make space for others, and selfishly, for myself.  Or, to prevent missing things for my two boys - 

or making adjustments to a marriage never imaginable when we uttered the words "I do". .

I feel like my world is constantly in disarray.  But I have surrendered to it.

It is definitely not void of mess, 

quite the opposite.

I wouldn't change it for the world.

But this, 

- this - 

Order brings peace in what is often a world of chaos, medical needs, educational needs, and a mom and girl just wanting things to take less time, give space for normalcy. +

I surrendered - I surrender willingly - to this life of special.

Sevo (vs) Propofol.... Crisis Averted: Ivey's Hearing Update...

I used to say, "Life with Ivey is a rollercoaster ride."  Scratch that.  It's nosediving in an airplane where she pulls up on the controls in the last second just before crashing.  

We have updated information on Ivey's hearing.  I have been in a state of joy and confusion.  Results from the November MRI and ABR are in.  

To recap, the MRI was looking for any structural quirks to the temporal regions in the skull/brain directed to hearing and the ABR was to see if there was any further changes to Ivey's hearing.  The MRI showed no new changes to the regions of the skull/brain, all is as it has been.  Still microcephalic, agenesis to the corpus callosum, and structural deformities to small bones that help conduct hearing.  And, everything still looks good from the cranial vault many years ago.  

As for the ABR, there is good news.  It seems that the November ABR was consistent with past ABR's, with the exception of the August ABR.  This means, Ivey's hearing loss has not progressed, it is stable.  That is GREAT news.  It seems her hearing is stable at a moderate loss.  It is not severe as indicated by the August ABR.  

I have aged 5 years in the pasts 3 months.  I have cried, ugly cried, an ocean worth of tears.  Literally.  It has taken me a couple of weeks to write this update.  My mind took that long to rationalize the information and I crashed in the aftermath of crisis being averted.  But what a wonderful Christmas gift.  

So here is the thing that is seems to have happened during the August ABR.  Mommas, if your kiddo ever needs an ABR, be aware of the following.  

It took the audiologist just shy of an hour to go over the following so I'm condensing information significantly.  It's just crazy.  Since the November ABR, I haven't read this many case studies and medical journal entries since college.  My head hurts.    

Remember an ABR (Auditory Brain Response) tests auditory neural pathways to the brain.  The audiologist reads the brainwaves in response to an auditory stimulus.  There is a study out of Vanderbilt that has indicated that anesthesia can alter ABR results.  The study compared ABR results after using sevoflurane and propofol. Sevoflurane is used for procedures under general anesthesia.  Sevo is a neuro inhibitor.  Therefore, sevo can suppress the neurological pathways during an ABR and produce "false" test results.  Propofol is also an anesthesia used under deep sedation and is not linked as a neuro suppressor.  Therefore, it is not affecting ABR test results.  Please read more on this, I'm watering the information down to its most simplistic form.   

It seems that August was the perfect storm for Ivey.  She went under general anesthesia due to surgical procedures.  Sevo was used.  Plus, t-tube were replaced in her ears, which affects hearing in the process.  Boom.  The ABR indicated a shift to severe hearing loss.  The November ABR was tied with an MRI and ultrasound; therefore, Ivey was intubated but only under deep sedation using propofol.  So the results of the ABR were not affected.  The November ABR was inline with past ABR's.  Ivey has been under general anesthesia when past ABR's were performed, but the August was the outlier.  

The weird thing out of all of this, Ivey left her hearing aids in after they were adjusted to a severe hearing loss.  She has never ever left them in.  It stumped the audiologists as well.  

Oh, one more thing.  In August, the audiologist kept asking me how Ivey's behavior had changed due to the hearing loss.  What behavior signified the loss?  I had not noticed any behavioral changes that indicated severe hearing loss.  I lost confidence and wondered how I missed it, what was I missing.  Erica and Stephanie didn't see behavioral changes either.  Ivey still responded as she always had.  What I learned, trust my instinct.  I didn't miss anything.  I have to keep repeating that to myself, "I didn't miss anything"......

Last week we returned to audiology.  Ivey's hearing aids were readjusted to the November ABR.  So keep up the sign language, the girl communicates through sign language.  But for now, Ivey seems to be in a stable hearing world.  Sigh................  

Anyone who is up for a girl's night out.....I'm in need!!!! 

When You Can't Leave the Past Behind

Today Ivey and I will head to Emory.  Specifically, we are heading to Emory's Department of Human Genetics.  We are going back to hopefully find answers to a question that has materialized in the past few months.  

Ivey's inner circle is aware of changes that have occurred and the steps we have in front of us in a search for an answer, if there is an answer.  

In Ivey's last sedated procedure(s), an ABR was conducted.  An ABR (Auditory Brainstem Response) tells us if her inner ear (cochlea) and the neural pathways for hearing are working.  Over Ivey's lifetime she has had several ABRs.  An ABR is the only accurate way we can test Ivey's hearing because of her limitations in communicating what she hears.  Where Ivey has consistently maintained a mild/moderate hearing loss, that has now shifted.  The latest ABR indicated that Ivey's hearing is now a moderate/severe hearing loss.  Her right ear having a moderate loss; her left ear having a severe loss.  Due to this, Ivey has a new pair of shiny teal hearing aids that have been adjusted to this new loss. 

As you all know, Ivey is diagnosed as deafblind along side many other medical/physical diagnosis's that additionally impact her ability to access her world.  I have had a few months to digest this shift in her hearing and how to compartmentalize it.  

Overall, there is one primary question.  "Will Ivey's hearing continue to decline?"   

This one question presents three possible outcomes:  

1.  Ivey's hearing is stable and this shift was a blip on the screen.  

2.  Ivey's hearing loss is progressive and she will continue to loose her hearing until deaf. 

3.  There is no way to know if the hearing is stable or continuing to fade. Hallway.

There has been a flood of emotions with the presentation of these new possibilities.  Once again we have been thrown into the Hallway.  Waiting.  Always waiting.  Looking at the doors, anticipating which will open.  

In the weeks leading to today, I have completed paperwork that pushed me back into the folds of my memory that I had tucked away.  Back into the dark shadows of my mind with dusty boxes, each labeled, and placed on a shelf. Some of those memories tucked in those boxes had finally faded into a livable softness.  The sting of digging back into the raw memories of her birth has been grueling.  Scars were ripped open.  

There was no way to open those pandora boxes without the ghosts of all the pain coming out.  Memories of Ivey’s first breath, my boys, Matt's sweet face, Ray's voice when she came into this world and knowing something wasn't right just from a change in the tone of his voice, the first moment I looked at Ivey's sweet face, Matt telling me how he knew something was wrong, tears, fearing Tami leaving my side when her shift was over to go home to her own family, trying to push through the pain that exists in the aftermath of childbirth to make unclouded decisions, watching my 3 year old sing "You've Got a Friend in Me" to her in the NICU, my 1 year old at home wondering why this baby didn't come home, tubes, machines, fear, love, joy, listening to specialists, sitting in that damn NICU, wanting to be home with my 3 and 1 year old boys, making the decision on a DNR order should it be needed for our newborn, the swirl of family dynamics and no one really listening to the dire need to keep visitors from the NICU, or putting their own needs to see her or show her to others over the specialists urgent insistence that Ivey be protected from the germs and stress of the outside world, and the moment the decision was made to take her down to the hospital chapel, despite the risks, to have her Baptized because odds suggested she would never go home......it goes on and on.  

For the past several weeks, I have sat in a dark hallway.  I retreated.  It keeps me on solid ground.  Solace gives me strength. I tune out the world and focus.  While here, I am on that emotional roller coaster that I am all too familiar.  Parents like us are overlooked.  I can say without a doubt, we experience a unique form of PTSD.  We live through trauma.  We live in trauma.  We live knowing there will be more trauma. There is no respite.  We watch our kids go through unGodly pain, often inflicted by our own hands, for their medical well-being.  We endure seizures tearing through their bodies.  We sit by their sides after horrendous surgeries like cranial vaults and La Forts, we watch them in pain, with no means to really help them.  We, the mommas, are most often the final decision maker.   As the saying goes, "The hand that rocks the cradle rules the world." We discuss medical decisions with teams of experts, our spouses, and even our child, but in the end, the mommas make the final call.  We live with our decisions in a gray area, ever wondering and praying we made the right one.  And now,  I keep asking my self, "Did I miss something?  Did I make a decision that caused her hearing to shift?  Why didn't I catch it?  What are we heading into?  Can I do this?   

I am prepared for today.  I'm not sure what will be asked of me now, if anything.  I have my basic knowledge from her initial genetic testing 15 ½ years ago, but genetics has transformed in the past 15 years.  I hope that there has been some research on Ivey's little chromosome deletion, but she's rare, very rare, I don't think there has been anything that would have brought attention to her rareness to spark that research.  And so, maybe Ivey will be the spark.  

Next week Ivey will have an MRI to take a look at her brain and hearing structures to see if any information can be gleaned.  

In the meantime, Ivey is soaring in academic areas that she was never supposed to go.  She is smart.  Her little brain is an actual example of brain plasticity.  I would love to think we have done something right, but it's all Ivey. She is amazing.  

I'll update as we go.   

What can we all do now as we wait in the Hallway?  Prepare. 

Sign language.  Braille.  Map her world.  Touch, so she recognizes you.  If we do these things, it doesn't matter which door opens, Ivey is benefitted.  All of these things will only contribute a make her world richer. 

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Our request of you:

Decide on 2 or 3 things you would like to say to Ivey and learn to sign it.  We sign words as we speak them.  Ivey learns to sign by attaching specific hand movements to the words we say.  Sign to her when you see her.  I'll walk you through the "how".  We can build your vocabulary from there.  Just decide what you want to say to her.  Don't worry about what you think Ivey wants you to say, say to her what you want her to know.  (Ivey does not fingerspell, so ditch the ABC's and learn words)

If you want to send Ivey a message, write it out, text or email it to me.  I will braille it for you.  We will teach her to read the words.  

Unexpected Lady in the Parking Lot:

It's 2 am and I am up replaying one particular event of the day. It's one of those things that my mind holds tight, edging itself in my mind in a way that most people don't give a second thought.  But in Ivey's world,  small events can be a reminder and rather symbolic of just how overlooked individuals with disabilities are in this able-bodied world.  Even in this tumultuous time of political correctness, the world of disabilities is still not part of the conversation. So here I am up at 2 am replaying today being grateful for a moment and opportunity to meet a stranger in a parking lot. I am reminded that education, means, and even faithfulness can never replace the kindness of strangers.  And, my girl has angels all around watching her.  

Over the years I have often found peace in what I have called "God Moments". Those moments that could be meaningless, yet, they happen at just the precise moment, in just the perfect way. I can look back at slivers of time and know without a doubt, God put a person in our path, normally for heart healing, to calm a fear, or one special moment, to send a friend.  From our experiences, God comes in many colors, shapes, and sizes. Today the lady walking across the parking lot was one of those people.  She was the lady I noticed walking in our direction and I hoped she would just keep walking. The person I noticed look at us and turn to come our way. My wall was already up after events that had just happened just moments before, and with one glance at her, I wanted her to go away. I was ready to deflect her, turn her away, protect Ivey from unwanted questions. Even though we were with three others, after 15 years, I know an onlooker when I see one, or so I thought. And then, there she was, standing, curious as to what we were doing. In seconds, she was quick to evaluate the situation. She spoke kind encouraging words. She saw Ivey as whole. Albeit a brief encounter, the lady walking across the parking lot was not there on accident. She was a reminder that He's got this. He's got Ivey. He's got me. He's got her teachers. And even though I still don't understand why Ivey was chosen as a messenger for people with mental and physical disabilities, He has that too. 

Ivey has never spoken a word, but she is ever the teacher, the encourager, the leader. It's just hard to be a passenger on Ivey's journey. I have a parent's heart that wants her world to be easier, struggle less, hurt less, hear less hurtful words. And in many ways I want the same thing for myself.  The lady in the parking lot was the tap on the shoulder.  We must experience hard things to appreciate all things.  She was my reminder to look up, see the people in our path.  

To explain today, I must explain an event at the end of the school year.  We attended an event for our oldest son, one pretty important to our family this year, where the handicap spaces in the parking lot closest to the event were roped off and available only to guests that had been highest bidders for seats at the event.  Obviously, handicap parking is the closest parking to access the event.  So roping off the handicap spaces for no disabled bidders was a reward of sorts.  A place that should know better, do better, completely dismissed a whole part of their community, our community. I had foreseen a couple of obstacles that could arise on that special day and made plans ahead of time and I greatly thank those who helped.  But this, it was not on my radar.  I am saddened to say, actions spoke louder than any words ever could.   As they say, actions speak louder than words. Action speak much louder than cute little Instagram quotes or long narrations of service to others.  Actions reveal our hearts.  Access was denied, intentionally.  It was disheartening, especially because of where we were, a place that should have felt like home, should have been "home" for our family.  Nevertheless, I was asked if I could drop Ivey off, go park elsewhere.  Matt drove separately.  And the event was a mix of people all focused on their own families.  Really, drop her off? Leave her alone? To go park across the road?  While she sat unattended?  All because handicap parking was roped off and only available to non-disabled attendees as a reward for buying seats?  Who thought this was acceptable?  Who seconded the idea?  Did anyone stop and think  -  this might not be our finest moment in being open to guests? Are we really denying access to the members of our community (siblings, parents, family, guests) in wheelchairs, mental/physical disabilities, or health issues?  Where were the leaders?

Forgive me, but in these moments, I get a little cynical.  I'm Ivey's momma.  I bear witness to the struggles and access issues that exist on a daily basis, but this caused an even different kind of hurt.   They know our family.  Though not willing to acknowledge them, there are others with family members that were denied access that day.  We weren’t just guests. It’s not just my belief in doing what is right by another, there are actual laws to protect access for those with disabilities.  The laws are in place to guarantee equal access whether on public or private property. I pray beg that those who dismiss individuals with physical, mental, or medical disabilities are always healthy and never have to attempt to walk in Ivey's shoes.  Handicap parking spaces (and the lines beside them) are not for convenience, there is never "easy" access for individuals with disabilities, only equal access.  Let's be very clear - Handicap parking is NEVER a reward for being disabled.  Handicap parking is most certainly not to be used, under any circumstance, as a reward for financial gain. Yet, even the laws were disregarded.  We were in a place that was supposed to know better, do better…teach better…lead better.   

What did we do?  We parked elsewhere.  

Today's experience was far from that extreme, rather an unexpected moment at an unexpected place that had a little sting.  It rattled me because I carry a deep bruise from the end of school event. Trust has been tarnished.  It's hard to unsee true underlying priorities and intentions. Today my brain was spun back to that place …  I once again couldn’t help but wonder,” What happened to the hearts and character, (Honor), and integrity of people in the places that are to know better, do better....teach better?”  But that sweet lady today, walking across the parking lot, she was a good unexpected moment.  A reminder.  A smile.  A teacher.  She was the person who was unexpected.  She took the extra steps across a parking lot as she was heading to the bus stop.  She was the one who  knew better, did better.  She's all that is right in this world. She was a messenger reminding us to look up, God is here. In all situations, in all moments.