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This is what life looks like for a family with serious chronic illnesses.  Each basket is filled with daily meds for one person.  All medicine is bagged individually with detailed information on each bag.  Each month, I dose medicine into weekly pill containers.  This usually takes me between 3-5 hours.  I dose the meds, rewrite everyone’s med lists on notecards for their backpacks, and then I put a med shopping list together.  Since I usually do this on the weekend or in the evening, I do the med shopping the next day.  This usually requires phone calls to various pharmacies.  Then follow up phone calls to doctor’s offices.   #notallillnessesarevisible #chdwarrior #dysautonomiaawareness

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By the way, these are just the daily meds.  This doesn’t include the occasional medication.  And these baskets have been a lot leaner and also a lot fuller.  Medication is an everchanging subject.

 

And not to leave our youngest medical mystery out, we have Miss A. our youngest child.  Several years ago, Ainsley had a seizure and quit breathing after receiving a flu shot (the whole episode was NOT due to the vaccine itself). Luckily we were at our local pharmacy and the pharmacist (also owner)’s  wife, a nurse, and Chris were there. Chris gave Ainsley mouth to mouth, and after a few minutes they were able to bring Ainsley back to consciousness. While we waited for the paramedics to arrive, they were able to do their medical magic to check blood pressure, sugar levels, etc.  Checking to see if there was any obvious reason for Ainsley’s seizure.  Nothing was obvious.  Because of Ben’s heart condition, we took this seriously and had her checked out.  Nothing.  Probably just a vasovagal event and she actually didn’t have a seizure.  After all, I had never seen one before, maybe I didn’t know what I was seeing.

Fast forward another six months. Ainsley has another one while at school.  No one saw her.  She didn’t tell anyone.  She just went to the nurse and called me.  She was crying because she knew she had one and didn’t know what to do.  (Details are being left out to protect the innocent). We took her in to the ER to have an EKG run as close to the actual event as possible. Nothing. Normal.

Two months later. We are at the pediatricians office.  Ainsley has to have a routine blood draw.  She is laying down, but when the nurse first missed the vein and started to fish, Ainsley looked at me, said, “Bye, mom”, and went into a tonic-clonic seizure for over two minutes.  Luckily, it was at the doctor’s office, and our pediatrician saw it.  She was able to verify that it was a seizure.  She had timed it and said that we needed to up our game to take her into a neurologist.

So, in two years, Ainsley had a total of four seizures that we know of.

Saw the neurologist, had a ton of testing done, and the doctor diagnosed A with epilepsy.

The neurologist started Ainsley on seizure medication.   When it didn’t agree with her, we went back and happened to see a different doctor in the same clinic.  He felt that it wasn’t epilepsy, but dysautonomia (Ben had seen this same doctor before, so the doctor knew his health history).  They had just hired a dysautonomia specialist and we went to go see him.

This doctor did great things for Ainsley.  Diagnosed her with POTS, Ehler-Danhloe Syndrome, Mast Cell Activation, and others issues.  Regardless of the diagnosis, the treatments helped Ainsley tremendously.  She didn’t have any more seizures.

But . . . .

this doctor left the clinic.  The other doctors didn’t want to take our cases.  And after years of trying, I was able to get all three kids into Dr. Butler and the dysautonomia clinic at UT-Medical Center.  It was a miracle.

The first things that Dr. Butler ordered was a tilt-table test.  None of the kids had had one.  This test is a standard in the dysautonomia world.

Ainsley was the first kid up for the test (out of all three).  We didn’t think anything of it.  It is not invasive (which is why we said yes).  The cardiologist who partners with Dr. Butler is in the room and monitors everything.

And then of course it happened . . . 7 minutes into a 45 minute test and Ainsley passes out and has a seizure.  Again. I expected her to have one, after all, she had been diagnosed with dysautonomia already.

What I wasn’t expecting was the doctor’s report to us.

His diagnosis for Ainsley is severe dysautonomia.  Ainsley actually flatlined on the table for 13 seconds while the doctors moved the table back to a horizontal position after she started her seizure.  Her heart stopped beating.  Seriously.  I was in shock.  My actual question to the doctor was, “Is that bad?”  That was my question.  (Oh, the answer was yes.)

He also said that she didn’t have an epileptic seizure.  She had seizure like activity.  Meaning . . . instead of her brain misfiring causing a seizure to occur. It was different.  Her blood dropped to her feet.  She lost 60% of her blood volume in her brain and chest.  It went straight to her legs and feet.  So her heart stopped beating because there was not enough blood to pump (no gas in the tank).  Her brain had a seizure because there was not enough oxygen in her brain, so the brain just turned the light switch off (causing a seizure).  All because she went from laying down to standing.

Her body’s autonomic nervous system, which tells your body to do things like breathing without you having to actually think about it, does not work properly.  The doctor said that out of all of his dysautonomia patients with POTS (and he said he over 1500) only about 80 have as serious of a case as Ainsley.

So long story short (and we have certainly skipped over a ton), Ainsley has been added to the list of medical anomalies in the Lake house.  She is rather proud of this one.  (When her brother had his tilt-table test and he made it through the whole test without passing out. She said, “I won!”  Really, kid. This isn’t a contest.)

We are dealing with this diagnosis.  I’m glad we figured it out before she started driving.  That could have been dangerous. She won’t be eligible to drive until she is closer to 17.  She is the master of her own health, and has is really working on being healthier.  She has many other health issues that we have also been dealing with, but none are as dramatic as this one.  She is a trooper and I’m very proud of her!

 

 

 

 

 

 

An update on Ben

As of today, July 4, 2020, Ben is NOT currently in the hospital.  Thank you, God! I posted a picture of Ben and since I rarely post updates on Ben in the last several years, I created a lot of confusion.  Sorry about that.

Here is the current update:

  1.  Ben’s heart is stable.  Not better. Not worse.  Stable.  That is important.  After his last procedure in the Cath lab in 2016 where a Melody Valve was placed in Ben to help with a pulmonary stenosis had been getting worse.  The pulmonary stenosis started after the Ross-Kono procedure in 2015.  Inflammation was getting worse in Ben’s pulmonary valve where Ben’s body met the donated cadaver valve.   So the Melody Valve was placed.  The inflammation has returned, but . . . it is yet at a point that requires surgical intervention.  He is on the bubble.  So no better. no worse. Stable.
  2. Ben’s kidneys are currently in Stage 2 renal failure.  This sounds worse that it is.  His kidneys were damaged during the last two open heart surgeries, which can happen when you are placed on a bypass machine.  His kidney are currently working between 70-80%.  This will NOT get better.  Over time and has he ages, it will get worse and to the point of dialysis.  Hopefully not for a long, long, long time.
  3. Because of the kidney damage, Ben has chronic high blood pressure.  He has had this since he was six years old.  We all know what high blood pressure does to a person’s body over time.  He is medicated.  The medicine serves two purposes.  It helps control his blood pressure and it helps take some of the pressure off of his heart to work as hard.
  4. Ben has dysautonomia.  Specifically, he has POTS,  Postural orthostatic tachycardia syndrome.  After Ben’s last open heart surgery, he began to experience VERY unusual symptoms and was having a ton of difficulty recovering.  Ben has always had unusual health issues and complications.  But after his last difficult surgery, the doctors began to pay more attention.  After seeing a ton of different specialists over the last five years, he has finally been able to get into the renowned Dysautonomia Clinic in Houston with Dr. Ian Butler.  This diagnosis has been a life saver.  Ben has missed so much school because of unusual health symptoms that were debilitating causing him to go on homebound for several years.  Last year, he first was able to get into one Dysautonomia specialist, Dr. Burkholter. This doctor did miracles.  He started Ben on a variety of new supplements, exercises, and IV infusions that kept Ben in school for a full year! But this doctor left his clinic less than a year after arriving, the rest of the doctors at that clinic refused to see Ben as a patient because he was “too complex”.  And then after years of trying to get into Dr. Butler, we succeeded.
  5. Ben has also been diagnosed with motility problems in his GI tract. He has had heart burn since he was born.  It become increasingly problematic after Ben started kindergarten.  He would just get up and throw up in the trash can after he would eat anything, and then go back to his smiling self.  The school didn’t like that.  I wonder why? ;).  The end result of this ten year saga of trying to figure out why he would go through periods in his life of throwing up constantly was a diagnosis of motility issues due to Dysautonomia.  He would periodically get gastroparesis after suffering from a stomach virus.  Ben does have damage to his esophageal lining due to the chronic heart burn.  Ben has been able to wean off of one of his stomach medications in the last year.  Mostly due to changes in his diet.
  6. Ben has also been diagnosed with dyslexia, ADD,  and other learning disabilities (mostly short term memory loss).  So he has difficultly in school.  He is unmedicated for this because of his heart.  Some of the diagnoses, like ADD, could be caused by the dysatuonomia.  Dysautonomia and specifically POTS, can cause a major decrease of blood flow to the brain.  In particular, Ben’s body is more sensitive to this issue.  It is very complicated and I’m glad we have a doctor to help.

Those are the main issues. The main ones.  Not the only ones.

Ben currently sees 10 different specialist through the year. Ten.  10.  That is every finger on both hands.  Think about the impact that makes on our family.

These are the following phrases that we OFTEN hear about Ben from doctors:

  • Interesting.
  • Conundrum.
  • I have no idea.
  • I once read a study about this.
  • He is a puzzle.
  • He is a bit of mystery.
  • I don’t know.
  • There is nothing I can do.
  • Let’s run more tests.
  • He’s too complicated.  I can’t help him.
  • Rarer but still have heard:
    • Come back to me when you are ready to do surgery.  Until then, I’ll just keep refilling his medicine.  You don’t have to see me any more.
    • You have reached the end of western medicine. Have you tried some Eastern therapies?

Having said that . . . we have had other doctors who have said:

  • We are going to get to the bottom of this.  No one should have to go through life feeling this way.
  • I have a 100 tools in my tool box.  If this doesn’t work, we will try something else. We will keep at it until we find one that works.
  • I was thinking about Ben last night when I was going to bed and I had an idea.  So I got up and I’ve been reading a ton of medical literature about ____.  I think this might be Ben.  Let’s get you into a doctor that specializes in this and see what she says.  I’ve already called her and talked to her about Ben’s case.

These doctor’s are rare gems.  I love each and every one of them.  They give Chris and I hope when we had none.  (By the way, the last comment is from our pediatrician.  She is the absolute best doctor in the entire world.  She has been seeing the kids since we moved here, and she is the best team leader for Ben that I could have ever asked for. She has all of his doctor’s cell phone numbers and isn’t afraid to call them.)

As soon as we have been able to cobble together a great team of specialist who have managed to work together, Ben starts to age out of the pediatric world.  Scary.  Terrifying.

In the last two years, Ben has started seeing a transition team at Texas Children’s Hospital.  This includes seeing a nurse and a social worker.  This team helps Ben to transition to adult doctors and also helps Ben to learn how to manage his own health.  Like learning about his medications (names, dosages, and why he takes them).  Being able to explain to someone else what his medical issues are.  Making his own appointments. etc. etc.

Ben’s health is in a constant state flux.  Things change all of the time.  So until the next change this is the current state of Ben’s health in a shortened version!

And I would like to start with this caveat . . . I don’t know what the answer is.  I have pondered this question for years.  Over the last few months, this question has again come to the forefront of my mind.

Here is the question.

At what point is it ok to ask society to help you?

All three of my children have been diagnosed with chronic illnesses that are serious.  The seriousness of each child’s illnesses vary.  My son has the most significant life threatening illnesses.  He was born early.  He had his first open heart surgery at 2 1/2 years old.  He has had many more surgeries and procedures.  He has kidney disease.  He has significant GI issues.  The list goes on and on.

He has limitations placed on him throughout his life.  But his dad and I always wanted Ben to be able to participate fully in the world around him as much as possible . . . without causing inconveniences to his friends and classmates.

So if there was a field trip, I always went along so that Ben could still go.  And yet, when he got tired or it got too hot or whatever, I would take Ben aside to take care of his needs.  I never wanted to burden the teachers and students.  They shouldn’t have to miss part of the field trip to accommodate Ben.

I am a truly believer of pulling up your own boot straps and taking care of yourself without asking for help.  Probably because that was how I was raised.  God forbid, my grandmother EVER asking for help.  She insisted on cooking her own food even when she was severely blind because of macular degeneration.  She figured out how to be self sufficient.

So now we have COVID.  Society is sick of being in quarantine.  For many, money is running out.  For others, they don’t want anyone telling them what to do.  Society got its forced two week stay-cation and it is ready to get back to work.  I don’t blame society.  It is part of the “Pull Up Your Own Bootstraps” philosophy which I whole hardheartedly endorse.

So what do we do?  We, as in those that have severely immunocompromised family members or are themselves seriously ill.

When society was locked down, Ben didn’t go any where.  He has not left the house (minus one trip to an empty church building while wearing a ton of layers of PPE) except to go see his grandparents who live less than a mile away (who are being extra cautious just so Ben has another place to be).  But I, as in Ben’s mom, felt somewhat comfortable because society was all working together to keep themselves and everyone else safe.   I was not as scared about becoming sick because society was wearing masks, standing six feet apart, and taking other precautions to avoid becoming sick.  We still spray and wipe things down.  We still immediately come home from being in society and change our clothes and take a shower.  That was when society was also taking care of following social distancing.

Now . . . now (I say with a major catch in my throat) society is blatantly flouting the social distancing rules.  I have gone into stores, and most people are NOT wearing a mask.  I drive by stores to determine whether to stop in and run an errand and see people lining up with NO social distancing from each other.  So what do I do now to protect my family,  because ultimately THAT IS MY JOB? We have decided to not go into any stores.  We are doing deliveries.  When we can’t get something delivered, we go into a store with major strategy in place.  Stores in the city of Conroe are avoided (NO MASKS. NO ONE TRYING.)  We chose stores in zip codes that strongly suggest social distancing.  We put our money where our mouth is.  That is my ONLY choice.

But this is in regards to buying the supplies that we need to live.  What about the rest of it?  The living part.  Ben has become so isolated.  Now with the number of active cases in our county still on the rise, restrictions have been lifted, and the vast majority of people ARE NOT social distancing. We are becoming more isolated.  My question is again . . . when is it ok to ask society to help you?

It is my choice to keep Ben home.  Because the idea of him getting sick scares me to death.  It is my choice to wear a mask in public.  It is my choice to take all of the sanitizing steps that I take. But is it fair to put Ben into a prison because of society deciding not to want to wear masks?

When is it ok to ask society to help me out . . . to help Ben out . . . by trying to keep germs to yourself?  He has not done anything wrong.  And yet he is being punished.

I really don’t know what the solution is.

 

 

When a congregation decides to “call” a pastor to its church, it is a long and thorough process.  Many “jobs” are like that.  Many jobs are not.  But there are stark differences between hiring someone is the secular world and calling a pastor to a church.

Besides President of the United States and other political positions, how many jobs out there interview the spouse of the applicant and review the immediate members of the applicant’s family before hiring them? That actually happens in the church.  It is not a formal part of the “call” process.  But it happens.  I was interviewed, maybe not with the same questions that they asked my husband, but it happened.  Each time my husband has reached the final stage of the call process with a church, I have been invited to attend a weekend with the congregation.  The premise is usually to introduce the pastor’s family to the congregation and to show the pastor’s spouse and family around the community, but the other side of that premise is that they are getting to know you to see if you will be a good fit for their church and community.  Trust me, if my children were crazy and wild during this “interview” process, my husband would NOT be called.

Our behavior is watched and judged.  What my children wear, how they behave, the clubs that they join, how involved they are in church is scrutinized.  Over the last 20 years my husband has been on staff at a church, either as a pastor or a youth director.  During that time, I have been accused of being a bad parent during a council meeting which was then thoroughly discussed by all members of council (even when my husband asked them to stop).  I have been asked to teach Sunday school and then had that offered rescinded.  I have been accused of not saying “hello” to a member when they walked past me in the hallway which then caused the family to ___________ (fill in the blank with some kind of negative response to the church.  God forbid that I ignored someone unintentionally).  My children have been dis-invited to birthday parties after the family became upset with my husband.  I have had members accuse me of being greedy when the church decided to hold a fundraiser for my son during one of his open heart surgeries.  It goes on and on and on.

One of the worst times for me lately was when someone became upset with me for a  multitude of reasons with the most egregious being that I thought I was better than her because I was the pastor’s wife.  Which resulted in me going to mediation with her and her husband for SIX HOURS with an outside mediator.  After six hours of mediation, she told the mediator that she didn’t know what she needed in order for this to be resolved and I told her out of frustration that the ONLY reason that I was there was BECAUSE I was the Pastor’s wife and that normally disagreements between members do not involve an outside mediator and entire day spent negotiating a resolution.

The families of the pastor receive very little in return for the hours missed with Daddy so that he can be with others during emergencies, or when church members feel free to talk negatively about the Pastor (a.k.a. their Dad) in front of them, or when people act inappropriately and you are not allowed to say anything.  The Pastor is someone who is truly called to serving God and sharing His good news to others.  Not the spouse.  Not the children of the pastor.

And yet, we are not allowed to become angry with others.  We must consider the many factors that may be going into that person’s decision to behave that way.  It is NOT alright for the Pastor to defend himself.  He/She must ALWAYS submit.  That is what you are taught.  We must listen to those who are angry and try to find a way to peace.  We must consider the rough life of poverty/violence/misogyny/racism/etc. that they must be going through. We must ALWAYS hold ourselves to a higher standard even when the other person will not.  Just because they are behaving a certain way doesn’t mean that we can behave that way as well.

The church DOES NOT allow you to publicly defend yourself against those that bring complaints against you.  You have to pray that someone (meaning another member of the church) is willing to do that for you.  I think that some people know that and take advantage of it.  When I had someone going around and spreading lies about me to cover her own misdeeds, I found out years later.  Out of respect for my position as “Pastor’s wife”, the people hearing the lies did not ask me if it was true.  They just did not spread the lie any further but allowed the lie to cloud their opinion of me.  Two years later they shared with me what happened and I was stunned and sad.

Out of 100 members of a church, perhaps only 1 or 2 are upset with you.  And then because everyone has different levels of involvement of the church, perhaps only 5 out of 100 know about it from your perspective because they are leaders in the church and are privy to the entire story.  Because the pastor is a leader in the church, if he publicly said  anything about it, it would be considered an abuse of his/her power as leader.  So what do you do?  How do you handle it?  As a Christian leader, what is the answer?

We often say in the church, “the issue is never the issue”.  A member may say he is upset about the politics of the national church and is going to leave the church because of it.  Or is he leaving because he made a huge financial commitment to the church and he can no longer uphold his commitment?  There is often a deeper problem going on besides what a person outwardly says to others.

In the end, being the family of the pastor is often a thankless, stressful, emotionally-painful job.  There are days that I want to just scream from the rooftop.  I want to be the town crier and loudly announce the misdeeds of those who speak against my husband.  When I am the one attacked, I want to be the one who gets to go the council and boldly tell them how I have been wronged.  I don’t want to do the right thing.  I want to stoop to my carnal nature and lash out at those who would seek ill will against my family, but I can’t.

There is no outlet for the Pastor’s family to turn to in order to vent and process.  Of course there is always therapy (which has been our constant tool for each member of our family). But with whom can you share your trouble  with in order to deal with the pain and grief of what is afflicting you in the church.  No one.

We used to have a small group of friends that met on a regular basis with whom we shared our highs and lows in life with each other.  It was a safe place for almost six years for us to cope and deal with any and all  joys and struggles that we might be dealing with.  But that came ended right before I stopped going to church.

About 1 1/2 years ago, I just stopped going to church.  In the beginning it was because the person angry with me was heavily involved and I felt it was better to just avoid her presence and allow her to be a part of the church than to continue upsetting her with my presence.  There was nothing I could do.  I had no power.  The accuser in this situation had ALL of it. 

Then the quarantine happened, and because I was living in the same household as the Pastor my help was needed and required.  Our motivation for helping to make worship happen is because we love the Pastor/Husband/Dad.  We also love the church.  We do not allow a few bad apples to ruin the entire bunch.

If you are a member of a church, here is what I would ask of you:

  • Consider the emotional welfare of the pastor and staff’s family.
  • Do not assume that you know everything just because you go to church every Sunday.
  • If someone EVER complains to you, make sure you next question to them is, “Have you spoken to ______ about this?”  If the answer is no, then the complaint MUST die there.  Gossip only festers and allows disease inside a community.
  • Remember that everyone is human and everyone makes very human mistakes.
  • Do not hold any person to higher standard than you ask of yourself.

There are so many different ways to be a spouse of a pastor.  I have seen spouses serve on church council and hold other leadership positions.  I have seen spouses do absolutely nothing.  There is no perfect way to be a pastor’s wife.  Someone will ALWAYS be disappointed in you.

In the end, the best thing that a pastor’s wife can do is to create a safe haven at home for your family.  Whatever that looks like.  A safe place for the pastor to not have to discuss church.  A safe place for your children to be their true selves.  And try to create a safe place for yourself emotionally so that you can ride the rough waves of ministry.

A walk and a nap

Chris and I were able to go on a long walk after breakfast this morning.  It was nice to get away.  The sky was cloudy.  The wind of blowing.  The beach was clean.  Wonderful morning.  img_6213

After the walk, we came inside and everyone worked on getting their chores done.  Then outside is where everyone went.  Dad doesn’t care where, but only that it is done outside.  I decided to go out on my porch and work on a few things.  Then Ainsley decided to join me.  She had a different focus.  A nap.

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She had played in the water for awhile and had now decided to sleep.  And sleep she is.  She has been asleep for hours.  Of course, as someone who has fallen asleep on that same deck chair, I know how wonderful it feels to nap outside in the shade with the wind blowing all of the bugs away.  In fact it is even cool enough up here to wrap up in a cozy blanket and not get hot.  So peaceful.

is to annoy each other with love.  We call it “forced love” in our family.  When someone is grumpy and the general methods of trying to cheer them up isn’t working, then we do a little “forced love”.  Lots of hugs piled on hugs.  Tickling. Trying to get them to laugh.  Sometimes it works.  Sometimes it doesn’t.   Ainsley was the target of our family cheering up last night.  And her wrath was fierce.  She didn’t want to take a walk with us, so we decided to pick her up and take her with us.  This obviously did NOT go over well.

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So what did your family do today?  Well today Dad decided he was tired of looking at the county’s port-a-potty right outside our porch view.  So he decided he was going to move it.

Granted the fact that it had been blown over after the sanitation guys had cleaned it out made it an opportunity that he couldn’t pass up.  But of course this required the entire family (or so he says).

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Then we talked about how the potty was no upwind from our shelter.  It is also the first port-a-potty on this stretch of beach, so we get lots of visitors. But it was still fun.  And watching the whole family work together to get it in the right place was cool too.