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.


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.


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.


The Animal Shelter

The final synopsis.  The dogs were loud.  She didn't even want to talk about the cats.  The snake.  That snake was her favorite.  

So so funny

Jammin Out

'Ivey'tude...when the stool is in her way

Mobility and language.  She is so very 'finished' with the stool in her path.  Not to mention that she is dragging the feeding pump behind her.  Pre-teen life in our house.  She's told me she was 'finished' with me a time or to...Now how to discipline this little creature?

The 11th Christmas...

On the 11 Christmas, our girl enjoyed opening her gifts for the first time.  Where she keeps holidays, especially Christmas (and Easter), real and grounds us in the purpose of the season, it was fun, literally heart warm, to watch her enjoy the packaging.  This my friends is a first.  It was a milestone.

And then there was this.  A gift for Ivey.  Or, is it a remote controlled car for Matt?

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 ...