Large Family Happenings, Medical Issues

Family Update February 2021

Family Update February 2021Family Update February 2021

Here is our BUSY Family Update February 2021.  For the shortest month of the year, it *feels* like this month lasted 428 years.  So.  Very.  Busy.  That meme cracks me up.  I’m not sure if it is my guardian angel, my mama, sister, or therapist.  Maybe all of them do that when I tell them something new.  Tis my life.

School

Still, Job Corp is not open.  I believe, to date, one has opened, so that is progress.  Right?  Noah got accepted into MSU and got his financial aid going.  He is figuring things out, so I don’t have to.  We’ve decided that Hunter will have his therapies at school.  Virtual therapy is STUPID.  It is seriously the dumbest thing ever.  He will only be at the school for an hour and a half.  Physical therapy, Occupational Therapy, and Speech will all be done weekly.  Maybe we will see some progress.

As for the boys, Jude is doing well.  He is learning to take his time.  The school gives him the ability to redo his assignments, but not tests or quizzes. He is learning to ask questions and study.  It has been a journey.  Daniel is struggling.  With FASD, it is hard.  Teachers “see” one thing (virtually), yet life is another.  We are going to take him 2x a week for tutoring.  After much back and forth, we adjusted his 504.  Praying that is going to help.

Happenings

There have been lots of birthdays this month.  Grayce, Hunter, Alyssa, Mimi, daddy, and several nephews have celebrated.  Also, we had a wedding shower for Alyssa on Hunter’s birthday.  That is one way to crunch it all in.  Originally, we had a separate day to do their share. Sadly, Alyssa got the flu or a stomach bug.  She was pretty pitiful.  We were not certain what she had, so we canceled until the 19th.  That would be one day before her wedding.

The rehearsal didn’t quite go as planned because there was a major snow/ice moment.  We considered postponing the wedding.  It was touch and go.  Alyssa was a wreck.  Arkie was a rock on the outside, still unsure of what lies beneath.  We got that done, without Arkie’s family.  Sadly, they got more snow than we did and just couldn’t make the trip.  I know that was a hard decision for them to make.

Once home, we did their shower.  Luckily, both my moms were here.  Hannah and Savannah were here.  Once the parents left, we started cooking.  We were all so tired but got it done.  Then, my girl came and snuggled with me until about 2 am.  Sigh.  Worth it all for that moment.

Wedding

All in all, we got it done.  My daughter was breathtaking.  Simply breathtaking.  Arkie.  I tied his tie and saw this sweetness in his eyes.  He really is a sweet boy.  Change is just hard.  Alyssa.  Stunning.  His family was able to come home.  The sun was shining.  Her pictures will be so beautiful with her flowers and the snow.

My mom knocked it out of the park with her flowers, doors, and all the things she creates.  She is brilliant.  My other mom was so helpful.  I’m so thankful my aunt was able to come.  The boys kicked in and helped clean up.  The food was good, the company was good.  Alyssa was so full of joy.  Arkie was so excited about his apple pies.

Health

Big Daddy was diagnosed with diabetes.  He has lost a lot of weight and his sugar levels are really good.  My plantar fasciitis sucks pond water.  That is in my right foot.  In my left foot, I’ve lost feeling in a couple of toes and the top of my foot.  It is due to a bone spur.  Eventually, when I lose feeling in more toes, we’ll address it.  My essential tremors have calmed down as have my psoriasis.

We have some upcoming appointments with Daniel to have him assessed for autism.  Honestly, we have always suspected it but as he gets older, things become more prominent.  Also, we have some upcoming appointments for Jude.  We are hoping to get some help with his FND.  Hunter had a massive treatment that I will address in another post.  So, stay tuned.

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Family Update January 2021

Family Update January 2021

Family Update January 2021

I believe it is time for a large Family Update in January 2021.  SO much has gone on with everyone in my house.  I am physically, mentally, and emotionally exhausted.  Honestly, I do not remember the last time *I* deep cleaned my house.  Sleep is not my friend, my emotions are on edge, and I have gained weight.  Also chopped my hair off, but that is a different story.

January

We started off the year with no school.  Really, no different for us because we were already doing virtual school.  This involved getting Daniel enrolled in high school.  He was coming off of being gone for several weeks and we had to enroll him.  There was a lot of togetherness.  We were all pretty much sick of each other.  Let’s be honest, we’ve been sick of each other since Covid19 and quarantine began.

We had the baby shower for Charleigh.  Again, not what we wanted but what is necessary due to the pandemic.

Counseling Continued and Began for Some

I continued on with counseling through January.  Honestly, it is nice to talk to someone but still frustrating.  I want to see more results, heal more, resolve more.  The boys also started counseling.  Honestly, the jury is still out on it.  They are with the same group as I am, but 2 different fellows.  We shall see how this pans out.  I hope it is successful.  We have goals.  There has been on revelation type opinion that we are further seeking out.

School

Again, it has not been the best experience.  I know the teachers are doing their best, but it is so hard for the students who struggle with special needs.  It’s almost like they are just continuing to ignore and let these kids fall through the cracks.  Just get by.

The kids do get the opportunity to retake homework and such to better their grades.  Yet, one of my kids needs more.  He struggles but no one sees it because he can work really hard and make passing grades.  The invisible disease of Fetal Alcohol Spectrum Disorder, possible autism, and a host of all the other things make education hard.

I am not impressed with the level of care the administration has for my son.  They said that there is nothing really that they can do and I find that disturbing.  Hunter is doing well, for the most part

Technical School and College

Job Corp is still not open, so we are in limbo.  The county that this particular school is in has to go “orange” in order to open.  College is going well for my son.  In the fall, he will begin going to Murray State.  He will start his junior year.  Where did the time go?

Health

It’s been a hard month OMS-wise.  The shaking is pretty significant in his hands.  His behavior is hard.  Schoolwise, he is doing really well.  Jude had one seizure this month.  We did up his meds for epilepsy.  He has not had any more Non-Epileptic Seizures.  The Functional Neurological Disorder stuff is a work in progress.  Daniel is transitioning home fairly well.  It has been an adjustment with him being home.

Family

Bart is okay.  Work is a struggle.  Covid19 sucks.  Bug and Ben are well.  The baby is doing great!  I’m so excited to meet her.  Alyssa and Arkie are engaged.  So, there’s that.  G … life as it happens.  Noah is good, busy, but good.  I pretty much gave the update on the younger boys.

As for me, I’m tired.  Old.  Tired.  Trying to find time for self-care.  This level of parenting is so different.  It isn’t physically exhausting as much.  For me, it is mentally and emotionally exhausting.  I just want to be and do all the things for all the kids.  Sadly, I can’t.

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Medical Issues

The Lost Art of Effective Doctor’s

The Lost Art of Effective Doctor's

The Lost Art of Effective Doctor’s

The Lost Art of Effective Doctor’s. I always go into an office with new hopes and new challenges. I hope I take my kid into the office and get something valid. Anything, really, as long as it is a concrete diagnosis. One child went to seven hospitals to finally land on a final diagnosis. Another child has had a slew of issues. Sadly, after almost a year and a half, life is not much different. We have seen four doctors in two hospitals and have been about eight things. It’s super fun to be talked AT and not talked TOO.

The Crystal Vase

I am listening to Broken Vessels by Hillsong right now, and it is striking a chord within me. So many days, I feel like a shattered piece of glass. Once, I was a beautiful crystal vase. There was a purpose for my existence. I held water and beautiful flowers and made people happy. Now, over the last 5 or 6 years, my beautiful crystal self has been shattered, and it is in a million pieces. Some pieces are large enough to glue together, though the cracks still show. The rest is just dust. You can’t put dust back together.

That analogy is one I hold close to my heart, and I think of often. It comes from a movie, Joshua. Joshua is an old movie, but it is so important in my life. Man cannot take the shards and dust of my former self. Yet God can take all of those shards. He can craft something unique and different. This creation has a purpose and is worthy of being displayed.

Man, I am struggling tonight.

I have to drive to Louisville tomorrow with my sixth child. We are going to Norton’s Hospital to see if we can figure out what is wrong with him. I have such PTSD with this drive, the hospital, the doctors. Sadly, it is hard for me to explain.

That is the 3rd place we took my 7th child to when he was finally diagnosed with Opsoclonus Myoclonus Syndrome. It has been three years, and to me, it feels like yesterday. I can recite that first year like I am reading a book. It was so traumatic. Hearing the words “take your son home until he succumbs” haunts me to this day.

So, tomorrow, I have to look down the barrel of that gun, once again, with another child. The waiting, wondering, listening, being talked at instead of talked to, the anxiety floods over me. I feel like my vase is being shattered all over again.

I am Overwhelmed with Fear

Being alone, navigating this all by myself. I am harboring feelings or hurt that my husband wasn’t with me though I know he had to be here to take care of our other children back then. Logically, I know that. Yet, that anger is still within me.

Anger is secondary to fear and/or sadness. I am afraid of allowing myself to be vulnerable or of showing too much emotion. Honestly, I am afraid of asking the wrong things, feeling stupid by the “professional” doctors, and seeing that one that said my other son would die. Sadness. I feel sad because I do not want to have another child with another “super rare” thing.

I know that Fear is a Liar

For real, I have the shirt that says that. **Hahaha, I’m listening to praise and worship on Youtube while I’m writing this piece.  Fear is a Liar just came on the channel. Wow. Just wow.** Yet, here’s the thing. We have been to see one doctor for his sleeping issues. We got there, did EEG, MRI, Sleep studies, bloodwork, etc. He was diagnosed with Idiopathic Hypersomnia.

In checking him for Transient Alteration of Reality, this doctor “accidentally” stumbled on Epilepsy. So then he had a diagnosis of Generalized Epilepsy with Gelastic Seizures and Absence seizures. He referred us to another neuro that works with teens for his Epilepsy. This same doctor would handle the Idiopathic Hypersomnia. The doctors did nothing else. There was no education on anything.  

Doctor #2

We get to the other doctor, did more bloodwork and another EEG. That showed that he was constantly having seizure-like bursts. So he changed the diagnosis to Juvenile Myoclonic Epilepsy with Gelastic Seizures, Grand Mal Seizures, and Absence Seizures. Prescribed meds. No education, just wait.

The first doctor “treats” him for IH, but in reality, does nothing. I mean, quite literally, nothing.

Then…the grand mal seizures began.

Not fun.

ER visits. No help.

Phone calls. No answers.

Emails. No responses.

Got a second opinion.

She said everything we were told was wrong.

Alrighty then. She spent 1.5 hrs with us. Now, we have information overload.

She is throwing around words like ESES, LKS, CSWS, and our heads are spinning.

“Get a medical id bracelet. You will need to cook with a buddy. Put the pans on the back burner, do not swim alone, do not climb a ladder. When bathing, tell someone and keep the door unlocked. Driving may be an issue. This may not go away we may have to take the magnet out of his head, ….”

Uhm, okay.

His new diagnosis is Generalized Epilepsy with Grand Mal Seizures. He does not have IH or Narcolepsy.

“Can you wake him up when he falls asleep?” Uhm, no. It usually leads to a long episode where he makes funny noises, makes fists, and stiffens his body. “Oh, those are grand mal seizures without the convulsions.” Oh, well, okay then.

“Violent episodes where he seems possessed and looks different?” Yes. “Oh, that is a seizure.”

“Moody? Hysteria, tears, angry for no reason?” Yes. “Oh, those are seizures.”

“School…is he delayed in Language and Math?” Yes. “Yep, part of it.”

“Deaf?” Yes, in his right ear. “Also part of it.”

**UPDATE to say that what he was experiencing with the sleep episodes are not seizures. They are called Functional Neurological Disorder. Blog post coming soon about that.**

I am OVERWHELMED.

Going back to this hospital that sentenced my baby to death (yet he is fine now) and seeing all those same people make me so nervous. Our goal is to be home by Tuesday. Supposedly, we will not have to see that one doctor. We would not leave without a complete picture and plan. We shall see.

Thankful

I am thankful that we were able to get into the hospital. Also, the doctor that I need to see is the one on call, so that is a positive. I am prepared. Big Daddy took care of little things like snacks, fixing my tire, and filling up my tank. Also, I’m thankful I have therapy tomorrow because I will need to use my words. 

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When the Adrenaline Crashes

When the Adrenaline Crashes

When the Adrenaline Crashes…reality sets in.  I feel the heaviness on my chest like a herd of elephants.  The emotions flood over me and I yield to the pain of what I have experienced.  Yet, my pain is nothing compared to the fear and pain of my child.

I can’t even articulate what he is feeling right now.  We try and work on communication, but lets face it, communication with a teenage boy is like licking a porcupine.  It doesn’t really work well.  Within 3 days, he has had 3 Tonic-Clonic Seizures.  He has been to the ED twice, in which we waited for hours, for nothing.  Nothing.  Just nothing.

Total Random Finding

Let’s all just realize that we accidentally found out he had Generalized Epilepsy about 4 weeks ago.  He had gone through a year of testing to determine his sleep issues.  We had to rule out sleep apnea, adenoids, snoring, getting good sleep at night, etc.  All that was good.

Next, we moved to an EEG…which was fine.  Just because it is fun, we did have Jude do a 2-4 day MLST.  We were told things were fine and that he didn’t hit the REM cycle during his naps.  That ruled out cataplexy.  He was diagnosed with Idiopathic Hypersomnia (mistakenly).  The final diagnosis is Functional Neurological Disorder.

Then we got a strange phone call from the nurse at the neuro office.  She said, “did the pharmacy call you to tell you they denied the medication for seizures?”  I’m like, no…Jude doesn’t have epilepsy, he has narcolepsy and to my knowledge, he was prescribed anything.

Jokes on me.

She said, oh, he has seizures.  It showed on his EEG and his MLST and the Dr. needs to get him started on medication.  I sat there for about 5 minutes and said something to the effect of “he doesn’t have that.  That’s not what we were testing him for.  Are you talking about him having epilepsy?  What are you talking about?”  Then she realized no one cued me in on the verdict.

That was super special.

We got into the dr and he could tell I was miffed.  I asked why he thought it was so important for a pharmacist to inform me that my son had Epilepsy.  Why he didn’t make the call and what was he going to do to help my son.  He half-way listened and then he referred me to his colleague.  Apparently, he works more with epilepsy and the current neuro did more of the sleep stuff.

I said well, then, when are you helping with the sleep stuff?  The answer was not what we wanted to hear.  It was more of when epilepsy gets under control.  Alrighty then.  Well, 3 triggers for his Generalized Epilepsy is lack of food, stress, and sleep deprivation.  He is never hungry, our house has a decent amount of stress, and he has, mistakenly, been diagnosed with Narcolepsy.  Again, this is Functional Neurological Disorder.

Apparently, I am stupid.

The ED dr was an idiot the first time around.  She said he was fine and didn’t have anything.  We left AMA.  The second time we went, we had a friend there and a great doctor who was very thorough and helped us transition his meds.  The fourth dr finally walked in after about 3 hrs.  Normal.  It is normal to not breathe during a seizure.  Yep, that’s when I lost it.

So they got us into the neuro and he and I had lots of words.  He said that not breathing was rare, that it isn’t worth alarming parents for something so rare.  I told him I would rather be alarmed than finding my son dead in his bed because of SUDEP.  I asked how he would feel if this were his son.

If a dr didn’t disclose all the things and that his son would stop breathing for 10-15 seconds and you couldn’t get him breathing.  If you were the one that waiting for about 30 minutes because of the ambulance.  Then, when they got there, they couldn’t even transport him due to the rules of another county.

Changing Meds

Instructions are to wean him off one epilepsy medication (the one that makes him mean) and slowly add in the new med.  I have told the other neuro that we need to move forward with some FND help.  If his sleep issues make his seizures worse, seems like it would be wise to get that under control so that he can have some idea of what it feels like to be normal.

But…what do I know?  I’m just the mom and my adrenaline is crashing.

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Update on Our School Situation

Update on Our School SituationUpdate on Our School Situation

Here is the Update on Our School Situation.  The kids have been in school for 2 weeks.  In those 2 weeks, I have done a whole lot of nothing.  I spot clean the house.  Supper is usually done by about 10 am because I can cook uninterrupted.  I pet the dogs and the cats.  Chip, my outside cat, and I have gotten to be besties.  There have been days I’ve just mindlessly scrolled through the internet.

Lest We Forget

Still did an infusion for Hunter, one day.  Baseball drop-off, pickup, and a game 3 days a week.  A deer through a windshield.  There were a massage and 2 dates with a bestie for lunch/breakfast respectively.  Oh, and naps.  I’ve taken naps.  Homeschooling.  I still have one kid here trying to finish her schoolwork.

Next Week

I have a hair appointment.  Then there is another all-day doctor’s appointment with Hunter.  Again, drop-off, pickup, and another baseball game 3 times a week.  Horse therapy.  A birthday.  And…homeschooling.

Maybe I do still do things.

First 2 Weeks with Daniel and Jude

Daniel is coming into his own.  It takes him a bit more time to do his schoolwork.  He has been dubbed “the smart kid” in his history class.  That title, he has beamed with pride.  He is making friends and eating more than he probably should.  He does love food.  I believe he is finding his way and that brings me joy.

We have discovered that in Jude’s apprehension to wear his hearing aid, he is now okay with it.  Once the student’s asked their 5000 questions, he is now considered bionic.  The obviousness of his skin color has been met with pride. He is wearing his heritage and proud of where he came from.  He is jovial, excited, and thriving.

Then There is Hunter

Hunter tends to express his needs/wants with a great and determined expression.  He now has 2 girlfriends..PA and then the girl with the long pretty hair.  Food has been challenging.  As he has some dietary restrictions, he eats what he can at school, and then I pack food for him.

On the first day of the “strike” system and he gets one for calling a kid “bad.”  Good times.  He has met the nurse with a good amount of blood and scrapes.  Apparently, in the stampede to go outside he got tripped up.  We do homework at night and he is focused.  He is loving it.

Noah Started College

He began this past Tuesday, so as of this posting, he will have been there a full week.  His nerves were shot.  He was so very nervous and anxious.  I think he is finding his footing but he has yet to experience the full-fledged experience of college.  I foresee that it is going to shock him.  He’s got this though.  I know that he is smart and determined.

Alyssa’s School

She has started the first day of her last year of college.   Gracious, she is overwhelmed but gaining traction.  She moved to another apartment and is getting her feet wet in the world of being in a fast-paced last year.  I’m so proud of her.

Grayce Plugging Away

She is still working on finishing her last year of high school.  I was hoping that she would be done by the end of December but I am not sure.  For a fact, according to the state of Kentucky’s requirements, she does have enough to graduate.  I, personally, just have some things I want her to complete.

We have many irons in the fire with what our next step is.  Yet, we just don’t know where to move.  Until I have a clear direction from Jesus…we stand still and do what we have been doing.

Ben and Bug

They are not in school but working hard.  I’m super proud of them both too!  My children bring me such joy.  I’m blessed beyond reason.

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Part 3 Welcome Home

Part 3 Welcome Home

 

Part 3 Welcome Home.  My flesh screams and I’m hanging onto the armrests of my airplane seat.  I refuse to move.  This is my anniversary.  This is our planned TRIP.  We are not moving.  I do not want to stay.  Honestly, I would live in France, if I had to, but guess what?  I don’t have to.  We are traveling, that’s it.  No more, no less.  I sit there, stunned. Unable to move or comprehend what all I’m about to see/smell/witness in this country I have never planned to go to.

What I Envision Versus Reality

The door of the plane opens…we grab our luggage that is packed for France….and we get off the plane.  My first thought is the drabness of the airport.  The busyness of it.  I felt like I needed to wash my hands because so many people were touching me.  They were all speaking in different languages.  I found myself watching their mouths move, trying to read lips or get a nugget of information, but I couldn’t.  I couldn’t understand any person or sign.  There was also not a single person who spoke English.  I felt trapped in this foreign country.  There was nowhere, no one to guide me, no vehicle, no home, no food, nothing.

Overstimulated Moment

I picture us grabbing our stuff and trying to find our way out of that blasted, loud, big, busy airport.  There was a moment when I needed air.  Sadly, I was overstimulated by the news and anxious because this was completely out of our control.  Air, I needed to breathe fresh air and take a moment to regroup.  I was thrown into something that was not of my doing.  There were two choices, I could either curl up in a ball and sob or I could find a way through the fear and uncertainty.

Ray of Sunshine

As I processed this news, I felt a ray of sunshine hit my face.  I felt a cool breeze as we walked outside.  In one moment, I opened my eyes and from as far as the east is from the west, there were tulips.  I love tulips.  Honestly, I love the beauty of them, the array of colors, the smells.  Tulips come up every single year without fail.  Far off, in the distance, I saw windmills.  The most gorgeous background, I have ever seen in my life.

Absorbing my Surroundings

As we walk around, absorbing our surroundings, we think about Paris and what we will miss.  The art, the food, the atmosphere……all of our plans, all the cool things we would see….we had to mourn that because we knew, we were “stuck” in Holland.  Don’t get me wrong, Holland is phenomenally gorgeous, it is just where I wanted to be.  I don’t mind a visit, but why must we live there.  We had to mourn not seeing our family, our home, American food, the freedoms we had in America.  There was just a lot to process.

Once our mourning time was done and we settled in to this new life….this new place with all these new sites, new foods, noises, smells.  We began to acclimate to our surroundings and we began to learn about the cultures and the foods.

Holland and Its Beauty

Holland has its own beauty, but it was not what we had originally planned for.  We had to learn to adapt and compensate for the things that we wanted to see in Paris and what we wanted from home.  It wasn’t bad…just different.  It was a change and I’m not one to like change.

I had to learn that I could not “fix” my children…only God could and will do that.  I had to learn to let go of control of what was and begin to love what is.  By mourning, so deeply, the loss of what was going to be a 10-day vacation to Paris, I was losing out on what was surrounding me.

Seeing Things from a Different Perspective

New colors, new foods, new scenery…..I began to love my new home and by loving it, I began to change.  Ironically, I began seeking God more and seeking help for my depression.  Also, I learned that FASD, RAD, Single-Sided Deafness, Opsoclonus Myoclonus Syndrome does not define my children.  Finally, I learned how to love again…I learned how to love my God, my husband, and my children for who they were and not what I “envisioned” them to be.

Be open to change.  Be open to new things.  Stop trying to fix things.  Stop trying to control what you are not meant to control.

Live life and love without abandon.

 

 

Life or Something Like It, Medical Issues

Part 2 Uhm NO

Yesterday, I wrote the FIRST PART to my story…..today, Part 2 Uhm NO continues.

Part 2 Uhm NO

 

Part 2 Uhm NO

Uhm, WHAT??????!!!!!!!!!!!!  Holland?   Uhm, no.  No thank you.   I know nothing and I do not have an itinerary.  Sadly, I do not have a place to stay, I don’t know where to eat, I know nothing.  NOTHING.  I can picture myself asking the stewardess if this is a layover.  How long it will be before we arrive in PARIS, FRANCE.  Then, she says that this is our destination.

Our ticket is one way…..they will be adding our children/pets, onto the plane, over the course of the trip.  This is where we will live out our days until the Lord sees fit to move us somewhere else.  I had planned on staying in France for 10 days, not my life.  I certainly did not plan on LIVING in Holland and what the heck do you mean, you will bring our kids during the flight?????????

When we started creating our family….we had definite plans.

Big Daddy wanted 1 child and I wanted 4.  We compromised on 3.  Our oldest was high strung, motivated, and determined.  She is also super sensitive to bright lights, noises, and does not care for lots of people.  Our second was a pistol.  She was creative, loved animals, told you like it was regardless of if it was appropriate or not.  She has a bit of a lazy streak and wanted things done for her more times than not.  Our third, our only biological son, was an easy baby until he wasn’t.

Noah’s Journey

He was the first to crawl, he babbled, talked, loved eating and then he had his 12 mths shots….life changed.  Maybe that was when we were “packing” to go to Italy.  It was like shades pulled down over his eyes and he stopped talking, he threw lots of fights, he had sensory issues…..it was tough.  Our life was now full of speech therapy, occupational therapy, and physical therapy.  It was hard.  The Lord guided us and helped us and allowed me to have a great deal of soaked in knowledge….and today, you would never know anything was ever wrong.

So…Victoria, we started planning the trip.  Alyssa, we started saving for the trip.  Then, with Noah, we got on that plane and we headed to Paris, France to see all the things we could see on a 10-day trip.

Then….there was God.

As we were flying, God saw fit to allow 2 more kids to join our crew.  These kids were older, than came from severe trauma physically, mentally, and emotionally…amongst other trauma and He thought it’d be a good idea to have Big Daddy and me to raise them.  It was almost like He threw me into the lion’s den as he did with Daniel.  I was totally unprepared.  Realistically, I thought I could love the FASD (Fetal Alcohol Spectrum Disorder), RAD (Reactive Attachment Disorder, Behavioral Issues, Dyslexia, Developmental Delays, Food gorging/hoarding/stealing out of them.  Sadly, I wanted to fix them.  Plain and simple.

While I was “trying” to “fix them”…..God showed up again.

This time, it was a brief detour, on our flight, to Ethiopia.  The trip there was ROUGH.  It was full of turbulence and engine problems.  We thought and we were told we would not make it BUT GOD had other plans.  We made it…..instead of a 24 hr flight, it would take us 15 mths to get from where we were (on a plane headed on vacation to Paris) to Ethiopia because He wanted us to add to our dysfunctional crew.  He was another older child and he had malnutrition brain, some behavioral issues, and we came to find out that he was deaf in one ear…not a little bit hearing impaired but deaf.  Again, I could fix this.  I could continue raising all these kids will “fixing” their issues and problems.  I was content, tired, and overwhelmed but content.

But then……..there was God again.

Several years and tears from our first child to our sixth child…..I was sitting on that plane, wishing to be at our destination so I could have some respite and time to breathe.  God decided to be my breath and to breathe for me…He did this in the form of our seventh child….our Zebra.

I thought the stress of trying to fix my FASD, RAD, ADHD, PTSD, Dyslexia, Learning Disabilities, Deafness, Autistic tendencies, Opsoclonus Myoclonus Syndrome, blah blah blah was going to bring me to my knees…..oh, heck no….this little dude came into my life and turned it upside down.  He has taught me so much and he has given me such joy but he also went from a normal little boy to a medically fragile kid in about 4 hrs.  Please hear me say…..I would not change a thing with this little guy.  He brings us such joy and happiness….even in the midst of uncertainty with his health.

Part 3:  Welcome Home.
Life or Something Like It, Medical Issues

Welcome to Holland

 

Welcome to Holland is a poem that I have always loved.  It is a different way to look at things when life does not go as planned.  There are 4 of my 7 children who have special needs.  We have dealt with Dyslexia, learning disabilities, Fetal Alcohol Syndrome, Reactive Attachment Disorder, Sensorineural Hearing Loss, Generalized Epilepsy, Functional Neurological Disorder, and Opsoclonus Myoclonus Syndrome.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

Planning a Trip to Italy

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

Discovering You are in Holland

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

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Life or Something Like It, Medical Issues

Let Us Pretend for a Moment

Let Us Pretend for a MomentLet Us Pretend for a Moment that you were a mom of an elementary school aged boy.  You get all excited because it is a local church’s Bible School and this boy wants to go.  Let’s say you forgot about VBS, so no one went on Monday, yet you remember on Tuesday and all goes well.  Let’s say again, that you took said the boy on Wednesday and when you went to pick said boy up, you quietly observe his interaction with his teacher, whom you do not know.

Again, pretending.

As you quietly observe, you see your son “flip” his teacher the bird.  Not once, not twice, but three times.

Possibly, because we are pretending here, you feel your blood pressure rising and you *try* to get to your son as quickly as possible….all the while, you are feeling like you are in the Matrix and you are moving in slow motion.  As you are moving, your eyes are on his “bird” finger and it, in slow motion, continues to move up and down at the teacher while the other children look on in horror.  HORROR.

As your slow-motion body gets to your child, you see that “look” on the teacher’s face.  That look that says “oh, my, goodness….this kid is driving me nuts and I have to put a happy face on because this child’s mother is standing before me and I have to seem like I am enjoying his presence when I really just want her to take this child home and never return.”  Seriously, anyone who has worked with kids knows that look because we have all given it.  Now, the tables are turned and it is *your* child (pretending…glorified mind).

Once home, you ask said child why they would continually stick out their middle finger when the teacher told them that that was not appropriate behavior and that he really must stop.

Child’s answer?  “I don’t know.”

What would you do?

What would I do, you ask?  I would call my mama and ask her for advice. Then, I would drink a large coke.