Living in a Pandemic

 Living in a Pandemic has made for interesting times.  In the beginning, I panicked just as did the rest of the world.  I read anything I could get my hands on. I tried as I might to weed through the media bias as the pandemic became a beacon of political ammunition.  At the end of the day, put most of the articles down, turned off the news and tried to step out of the social media world.  

Here's why.  

I was (and at times remain) angry.  

Why?

I became resentful.

Why resent?

You see this virus, COVID, places no increased impact on our family than any other cold, flu or nasty little bug that flows freely through communities on any given day, pre-COVID. 

For 14 years we have juggled going out in public and "self-quarantining" when necessary.  

Why?

Our family has a member who is a little more fragile.  A family member who has a compromised immune system requiring IVig.  A family member with a heart deformity.  A family member that has been trached.  A family member who is high risk and susceptible 365 day a year.

For 14 years our family has used common sense without a government official demanding it.  Without a doctor lecturing us.  Without "friends" on social media lecturing me on a subject they probably barely passed in high school, let alone studied in college...Biology, Virology, Microbiology.  

The flu pandemic that sweeps over the country (and world) each and every year places the same demands and risks to our elderly community, pregnant women, and individuals with compromised immune systems.  Furthermore, the wave sweeps through our schools with mass infection - no precautions - no shutting the schools down - no closing of businesses - no media hysterics - no mention of precautions by "friends" on social media - no political ramifications. Hospitalizations high. Death tolls tend to be high. Seriously, look at data from past years. 

The isolation.  It has been part of our normal for 14 years.  Isolation is not meant for human consumption.  People love people, people want to be included.....want to be remembered...want to feel needed....people need touch. The bottomline - when you aren't present, people forget you.  On a perpetual roller coaster, we frequently loose contact with our church family for months, sometimes years at a time.  We fall out of friend groups because we've said "no" too many times.  Living with Ivey's health is isolating.  As I watched the world fall into isolation like we often are, well, I looked around and asked "What's the big deal?"  (I know- cold-hearted, right?)  (Not so supportive, not the same grace I ask for.)  I wanted to look at the world and say the tried and true script that is often repeated to me - deal with it, adapt, look at the good things coming of this - and maybe a few times I did say it to the unsuspecting friend.  I am sorry.  

Why resentment? 

The world and our communities stepped into a new world with high health risks and they completely fell apart.  People became self righteous. 

I had to step back...... and try to lend grace (probably not my strength) to a world that has been slammed into our world. Our first steps into a different world weren't all that pretty.  I still get the uglies some days.  But it seems the world finally took a deep breath.  And in many instances the world is now slowly releasing that breath.  In the release the world is acknowledging that  humans cannot and do not control everything, even with the most rigorous efforts.  Repeat, humans are not in control.  

As for isolation, finally without even realizing it, the world, our community, our church and our schools began to try to make this world inclusive for families JUST LIKE OURS.  Families like ours, the ones with circumstances keeping them from life outside of a box, were finally finding their way in through innovation and Zoom and Facebook live.  The world is feeling pressed by isolation, but our isolation in a unique way has lessened. 

Here's the thing.  For our family, this is actually the safest we have ever felt moving about with Ivey.  

In some ways I have been able to smile and know why God gave Ivey to our family.  We can handle the sacrifices she demands of us.  That's not saying we are always smiling about it or even happy about the sacrifices.  I have my self pity days.  My friends know this well, and somehow, they have loved me through it.  We take on the challenges through the strength of those around us. We are resilient.  

I read an article in the early COVID days that simply said in all the data that was being accumulated, there was too little on kids with complex medical needs to determine how it affected them.  

Why?  

The parents were already taking the necessary precautions due to the life style demanded by these kiddos.  Simply, the complex kids weren't catching it at the rate of the world around them.

Then, at the end of this summer, Ivey's pulmonologist finally started getting data on complex kids.  The complex kids were catching COVID, some were being hospitalized, some stayed home, and yes, a very small percentage were dying. Those that passed were fragile, it happened to be COVID, but any illness would have been too much.  

If you take anything from this, please let it be the following words.  I am going to share something very personal with you.  Something hard.  Something that haunts me often in my dreams, in unexpected moments.  Something that I know, that my husband knows. Something no parent ever wants to know.   

Once upon a time Dr. Rogers sat Matt and I down to talk about Ivey's medical future.  He said we would be faced with many hard medical decisions.  Listen to the doctors.  Ask questions.  Then, use that information to make the best informed decisions for Ivey.  He continued to say that there would be a day that we might  have to make a hard decision quickly.  We will be faced with deciding to continue chasing Life or know when we must let Life go.  He said we would know when we were there.  We needed to decide now what we would do then.  We did not need to make that decision in high emotional turmoil.  In that moment he said to go home talk about our hard lines so that when the day came and that quick decision was facing us, we could make the most informed decision and know that it was well thought out in advance.  We have done that.  We live with decisions we know we will meet one day.  Before we left Dr. Rogers that day, he emphasized that we let Ivey live her fullest life. Give her life. Pursue life with her.  Do not fear her LIFE.  

I can honestly say, we have tried to give her the world, knowing that she is the actual gift to the world.  We could choose to fear her getting sick.  We could hide.  We could fear people. And maybe in a sense we do, I do.  But we have not let that fear stop her, or us, from living.  Maybe we do live differently.  Miss a day of school. Not attend church. Skip that birthday party.  The risk is always there.  It always will be.  We are super precautious.  But Life is precious.  Life is meant to be lived.  So, mid-pandemic, with the world in disarray, faces covered with masks, people social distancing, and finally with on-demand hand washing - I took Ivey to Disney.    

Now - I am past being resentful.  I mostly feel a little sorry for all those paralyzed by fear because of the news or a political party taking a hard stance on a virus that isn't political.  Like many these days, I rarely look at social media. (Or I have secretly silenced friends for 30 days).   I listen to news through filtered ears. I listen to more than 1 news source.  I read articles from less popular sources, less bias.  I am sending my girly girl to school in a mask or face shield and I trust that those working with her put her best interest in place.  She LOVES her friends.  She loves school.  She loves to learn.  I saw the effects of taking that away from her during the spring.  She was stressed with LIFE stopping. Seizures took hold and ravaged her body and mind.  Maybe the world wasn't ravaged by seizures but something else happened and vitriol erupted. 

Look at Ivey.  Take Dr. Rogers advice.  Be informed.  Take precautions. Live in the midst of "it". 

And When This Passes, Remember Us: Thoughts on The Church in the Midst of Pandemic

And when this passes, families living with a someone with disabilities and medical complications hope our church families and congregations remember the isolation and loneliness they felt not being able to worship together. We hope you remember our family lives this type of isolation week-to-week and year-to-year. Keep the avenues open for us to worship with you from afar. Once this passes, remember we cannot sit with you in the pews at times, we just don't fit in the traditional manner. Even in the most traditional churches, embrace the avenues of inclusion you are discovering that are not-so traditional and keep the virtual doors open. And when this passes, remember us.

In this moment, congregations have the opportunity to lean into families like ours and ask, 'What coping skills have you developed to survive the isolation from community, the unknown, the barrier of worshipping together as one?'.  Right now, no one is asking us how we survive day in and day out, for years, with the fear an illness could take the life of our special person. We self-isolate from illness to keep our family member safe from illness, we are often forgotten, or so it feels. Most often we literally cannot get there because of life circumstances, it does not mean we do not want or are choosing not to be there. And like the pressure being felt now by so many, we cannot come in because of a compromised immune system. We worship from within our own homes, just us, no community, no sharing that which binds us together in worship. Now, in this moment, churches are working to find non-traditional methods to bring community and worship into homes. Technology does not diminish the place, it enhances the people, it connects us. Don't cease these discoveries as these days end. And when this passes, remember us.  

We, families like ours, have so much to offer to this conversation that is so evidently rocking the comforts of the world you know. This may be new for the majority of church families, but not for families with a member with disabilities/medical complications. Isolation from the church and community is not new on us. When congregations relate this to the parable of the blindman revealing the Glory of God, come to us, ask us, what it actually feels like to bear that cross in real life and bear the discomfort that comes with the revelation. Ask us what it feels like to bear that cross and to make the lifelong sacrifices, use our words to talk about that parable. We see the Glory firsthand in the midst of struggle. God is using us and our family member, so should you. This pandemic is causing discomfort and isolation. Come, talk to us about tamping down fear and focusing on self-sacrifice to do what is in the best interest of another. We are part of each of you and the church. And when this passes, remember the families with disabilities and medical complications.



((You can find many articles written about parenting children with disabilities in the church from many walks of life. Each heartfelt.))

The Price of Good Intentions

Last night I got my girl bathed and dressed for bed.  Our usual nightly routine.  Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery.  The routine is necessary.  We discuss what will happen to her once her surgery begins.  Who will be with her.  Possible things she might feel and hear.  I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of anesthesia  and that she may not know where she is, but mom and dad will be close by, just waiting to get to her.  I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart.  They will be as gentle as possible. And as always, this is the point where I cry.  I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is best for her, permitting only what is deemed 'medically necessary', and all based on what I perceive she and her body have  been telling me over the course of months and weeks.  I cry to her.  I ask her forgiveness for once again making a decision that directly impacts her, and one that always results in her enduring physical pain. I have lost count at how many times this conversation has taken place.  So, so many surgeries.  No matter the 'big' verses the 'small', the same routine prevails.
This procedure is necessary and, yes, I agree to it.  We come in for pre-anesthia a week or so prior to surgery.  A list of specialists (neuro, pulmonology and cardio, primarily) consent that she can undergo anesthesia and the procedure.  And then the barrage of questions all requiring deep explanation, a look through the winding path of her medical history, begins.  As her mom, it feels like being yanked under water and while there, re-live some of the worst moments in Ivey's medical history in vivid detail. It mentally takes me down.  It is mental trauma that is brutal to revisit, yet I smile at the nurse, talking, while the shadows creep up the sides of my mind.  In the shadows are those questions I keep suppressed far down. Will this time have a new detour we must take? Is it possible this time turn out like those that are flagged in the system?  A therapist once called this a form of PTSD and that many mommas with medically complex kiddos experience this trauma. All I know is the fear begins building.  It's a tap, tap, tapping reminder that my tough girl really is fragile.  This day is always the start of my panic, self-doubt, what if I'm wrong, accompanied by many sleepless nights, until the very  moment where I am sitting in this tiny room waiting for her to come back to me.  Praying for her to come back to me. Men are more stoic. I wish I could be, but here I sit.

The night before surgery, we have our mom and daughter conversation.  The gripping fear squeezes my airway.  We talk on.  Me giving her all the detail I know about what will happen to her.  She listens.  The good intentions are real.  But does me sitting in the waiting room waiting for the nurse to update me even come close to her being the one on the table?  I ask her to please know I am trying and doing my best to learn as much as I possibly can so that I can make the best decisions on her behalf, even when those decisions require pain inflicted on her.  I tell her I would take the pain a life time over and over, if only the world would allow it. I promise her I have listened to every breath, heard every seizure, taken heed though every sleepless night and did my best to stitch all those moment together to create a pattern that points me to the right place she is in pain, just how bad the pain is and how to convey her experiences to her medical team.  I cry apologizing should I be wrong...just please forgive me.

My girl. She simply smiles.  Signs "Ivey's Momma" and asks me to tell her that yes, "Ivey is momma's beautiful girl."  Maybe that is Ivey telling me "Mom, it's okay.  I know."  I just hope she knows this is her means to console her momma. I need her to tell me its okay, that she is okay.  If ever I could hear her voice, this one moment would be it.  I need her to forgive me for putting her through this, again.

I am her voice.  I make decisions.  I have good intentions.  But I can never escape the reality that she has her own voice and makes her own decisions.  I just happen to be the one interpreting and Lord I hope she will forgive me if I haven't listened well.

Ivey trailing independently - orientation & mobility

Does She Talk?

The thing about the term "nonverbal" - it isn't always accurate.  Technically, it's a terrible label.   I always get a little, how should I say this, perturbed when someone calls Ivey 'nonverbal'.  You see, this terminology leads others to assume Ivey can’t communicate.  Oh, she communicates.  Quite well I might add.   My question is it Ivey who is limited because she doesn't speak verbal sentences, or is it the rest of us who are limited because we only pay attention to words spoken verbally?  And, nonverbal always makes me think more along the lines of mute, but if you have hung out with Ivey for any short period of time, she is anything but mute.  Remember there was a time when I could apply the humivent on her trach as an on/off switch.  This came in handy in church.  Well, that was until she figured out how to use her finger to cover the hole... years since  decannulation it's been game on.  Literally.  

The nonverbal box tends to underestimate her abilities.  It underestimates any clinically labeled nonverbal kiddo.  The real boxes should read:  "How does she communicate"  "Teach me."

In my opinion, it's the rest of us who haven't quite caught up to her.  As a good Southern woman I should say, "Bless your heart."  So 'clinically' we check the nonverbal box, but in reality, she is the most expressive and diverse communicator I know.

Why the soapbox you might ask.  Well, every so often we get to hang out in Scottish Rite when she is at her 'normal'.  Here is ole Scottish Rite they refer to her 'normal' as baseline.  Being here during these time, which are not often, is well with my soul.  Normally, they see her in medical mayhem which means she isn't very active or interactive, often lethargic.  Today, we, better yet, She is at baseline.  Me, I'm technically sleep deprived, caffeine deprived and noncompetitive to her ability to run on such few hours of sleep.  To me, She is superhuman.  But let's get back to communication.

I have sat through two shift changes, an EEG, a somewhat run of the mill seizure (which was entertaining, ask me about it sometime) and various medical staff.... they all are enamored by Ivey's communication.  Each person wanting to know a tidbit, how to say her name, how loud to speak, how to let Ivey know who they are, and the "What's she saying now".  For the staff, many who have been with her for years, this is a rare treat.  Have no doubt this go-round, she is game-on right up to throwing her legs over the bed rails...encouraging the nurse to lower the bed as low as it will possibly go ...... as the nurse said, "Encase she jumps out".  

I am reminded that 'clinical' terminology never describes my girl's capabilities. This applies to any arena requiring us to check boxes.  Can you imagine at every corner sitting through appointments or assessments where the only thing anyone wants to know about you can be checked on a box?  Now I say all this but for those who are in her medical world consistently or in her non-medical world consistently, you do know Ivey does not fit into many boxes.  As one nurse told me yesterday, "She is in a category all her own. She is so interesting."  Yes she is, nail on the head. 

Now that's all cleared up......

Don't let the lack of 'verbal words' or not being like the rest of us 'typical' people throw you. Ivey has a very clear and distinct language. The girl has no problem getting her point across.  She is a signer.  She is a vocalist. She is a body language.  A internal linguist.  Not in the traditional sense, no, it's Ivey's Language.

For example, Ivey has no problem telling you just how 'finished' she is with you.  Like just a moment ago, she adamantly told the respiratory therapist she was extremely 'FINISHED' with him - and he hadn't even started her breathing treatment.  She was busy and he was going to be in her way.  She signed "finished" very sassily. Then daintily took his hand in hers and tossed his hand away with a flick.  He didn't know whether to laugh or be offended.  Let's just say he was 'amused'.

So, yes, we are visiting Ivey's people in Scottish Rite here on the first floor.  Aka, the seizure floor for those with seizures.  We won this sweet stay after she threw out a seizure while in the waiting room at dental yesterday.

Beyond traditional communication, Ivey has a toolbox of ways to tell me things, including overall preteen attitude.  As of lately a very almost 13 attitude.  And to think I thought I might miss this phase.  

Like now, looking at her in the hospital bed.  She's let me know just how bored she is....  and she's let me know through more than one Ivey channel.  Ivey is Type A multi-tasker - and quite the demanding type.  Seriously, can you brush your teeth, play some music and eat all at the same time? That's what she is doing now.

On that note, and mainly back to the signing, Ivey needs people who know her communication language - she has so much to say right along with personality to say it. If YOU want to learn her language, please contact me.  I'm looking to enlist a few new Ivey communicators.  I just need to know you are interested.  She's not a traditional signer like you think when you think 'sign language'.  Come learn some Ivey Language with us. Again seriously, she needs more hands.  Frankly, she is demanding more hands.

So, no Ivey is definitely not nonverbal. Does she talk?  Yes. Do you need a few tricks up your sleeve to talk with her?  Yes.   Please let me know your interest and let's put some language in your Ivey toolbox.  I can teach you all you need to know - she will teach you the rest. 

One of our few moments of quite....songs about Ivey.

Ivey's Summertime Job

The girl helping her daddy.  Best days of summer.

Teeth & A Port

Given that Ivey has a cleft palate that was pretty severe and extended far into her soft palate, even after repair, and years later, it has left her with some precarious cranial and teeth issues.  So here we are, back at Scottish Rite doing a little OR time to help alleviate some pain and address a few other odds and ends.  And after many years needing a port for immunoglobulin infusions, it has been officially removed.  Infusions have been replaced with Sub-Q infusions.  So away it goes.