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Posts tagged ‘Health’

Kick in the Gut

So sick of OMS……repeat SO SICK OF OMS.

I was speaking to our doctor’s nurse (she is fantastic btw), and we were discussing how we can get the OT/SLP/PT here at the house through home health.  It has been approved through insurance, but we are finding difficulty in anyone who will work with pediatrics.  It has been a bur in my saddle.

I called our local hospital and they said they could do it.  Yay.  Then the nurse from our doctor’s office called and said she was facing resistance.  She said that because Hunter is “medically fragile” that they will not see him.  He is not a do therapy and get better kind of kid.  He is a do therapy and maintain his status type of kid.

I’m surprised I heard anything past “medically fragile.”  I think I did miss a lot because tose 2 words, used in a sentence with my son, cut me to the core.  The definition of medically fragile is defined as a chronic physical condition which results in a prolonged. dependency on medical care for which daily skilled (nursing) intervention is medically.  Maybe I knew that, deep down…..but hearing it forces me to come to grips with the diagnosis that my son has.

The longer he is symptomatic, the more chance of him having permanent brain damage because this is a neurological condition.  I sit here and watch him and I see that he is shakes….I see that he struggles with walking….I hear his speech issues….his food issues….his eye twitching…..and I think he is medically fragile.  There is no cure.  There are massive drugs he has to take to maintain his health but those drugs have massive side effects that has adverse effects on his health.  It is a double edged sword.

This disease is horrible.  It is uncertain.  It is uncurable, by man’s standards.  I hate it but I’m reminded of my sweet friends Mr Cliff and Ms Jan…..as I was telling them the latest in the saga of our life, at church one morning, Ms. Jan looked at me and said “but Brandi, you have to remember this one thing…..1 Thess. 5:16-18 “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” *Emphasis is mine*  It does not say “be joyful when things are great and everyone is behaving and healthy.”  It says to be joyful ALWAYS.  Be thankful in ALL circumstances.

So…what am I thankful for?

He is alive.

He is with us.

He has an amazing support group.

He has doctors who are going above and beyond.

We get the same nurse for every treatment.

I have a great relationship with his mom.

I am able to email his mom and keep her up to date.

My sisters.  My brother.

My parents and my mother in law.

The support of so many people that I know and love and that I don’t know.

A wonderful church, who prays for him.

All our prayer warriors.

Kids who see a need and meet it.

There is so much to be thankful for………….even on the bad days.

 

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Opsoclonus Myoclonus Syndrome Update

It has been 6 mths since Hunter was diagnosed with Opsoclonus Myoclonus Syndrome.  You can read about it here:   The Rogue Zebra Has Been Caught and Named  It has been a LONG HARD road.  I cannot even describe how hard it is to watch him, day in and day out.

Everyday is hard.  I cannot even remember what it was like when he was “normal.”  Where he was 98% potty trained, speaking well, able to eat, sleep….just being sweet.  Now, our days are filled with Parkinson type shaking, slow and methodical speech, hypersomnia or insomnia, not eating well, not drinking well, rages that are beyond a 3 yr old rage.  His eyes dancing, falling all the time….I mean it is hard.  You can see our videos on YOUTUBE.

We are all tired.  Hunter is frustrated.  We are, currently, at the hospital getting another round of IViG therapy.  It is a 7-10 hour IV push.  If we do it too fast, he is throwing up, lethargic, arms/legs hurting, head hurting, and all sorts of fun side effects.  When we can stretch it out, some, he has some symptoms but not all of them.  He is usually symptomatic for about 7-10 days after treatment.  Then we have about 10 days of little symptoms, and then it gears back up before our next treatment.  He only has opsoclonus when he is tired…..but within 30 minutes of starting the IV, his eyes started dancing.

Our attending physician (pediatric neurologist), spent a lot of time with us, today and for that, I am grateful.  He listened to my fears, we talked things through, he was as encouraging has he can be with me and he is wonderful with Hunter.  This disease is 1 in 10 million…………most doctors, nurses, ERs, or pediatric neurologists never see this in their lifetime and there is no cure because we don’t always know the reason for onset.  Most times is neuroblastoma that is encapsulated within the chest cavity.  It can and is removed but it does not stop the symptoms.

There is a treatment that we are adding.  ACTH (a mega type steroid that helps your body to produce the hormone cortisol).  It is a beast.  Side effects sucks.  We will do that in combination with IViG (immunotherapy) and Rituximab (chemo).  We start this new drug in January, so we shall see. It is hard to administer (IM shot) and it is hard to get off of.  The longer my son has these OMS symptoms, the more it takes affect on his brain and causes permanent damage.

One day, there will be a reason for OMS and there will be a cure….heck, it could be Dr. Sweeney who finds the cure, on Hunter….who knows.  I’m thankful for the knowledge of Dr. Wendy Mitchell and her consult with our case….just because she is kind and she has seen a lot of these patients.  I’m thankful for our OMO nurse, Kim………., Dr. Sweeney for listening, emailing me back, wanting all information.

God is good….even in times of trials and pain.  He is teaching me.  He is refining me.  He is telling me that I do not control every aspect of life and I cannot control OMS, but He can because He is bigger.

May a cure be found.

Any questions……..please ask!

Military School? Good or Bad?

G is 16.  She has been with us since she was 6.  We had a 3 day honeymoon when she moved in and then BAM.  It was over and life was a struggle.  Gracious, the behaviours, the lies, the manipulation…..bad memories.  After several years, we had had all we could handle.  I could not physically do much because she may be short, but she had grown in strength and was starting to get physical.  We made a tough decision to send her to military school 3 1/2 hours away…..for 22 weeks.  We had one visit for a few days, over July 4th, weekly phone calls that lasted about 2-3 minutes, and letters/emails.

As a family, we stepped back and we began to heal.  Military school was not what we thought it was going to be.  She gained more weight while she was there because the kids found ways to get out of PT.  Her excuses ranged from she was going blind to she was lame.  I finally had to forbid her to go to the nurses station 12x a day.  The nurses also, unbeknownst to me at the time, forbade her from going because it was excessive.  She watched movies that we would NEVER allow that are 100% inappropriate for adults, much less, troubled teens.  I had to let it go.  I started looking at it as a break.  A much needed break for all of us.

We took this time to reconnect, heal, talk about things, work through some things, and focus on peace.  We had forgotten what peace was like.  The kids wrote letters/emails to each other and my prayer was that healing would begin and bridges would be built.  Bridges were not rebuilt.  My kids disclosed such painful things that they had kept to themselves.  It hurt my heart and frankly, I didn’t want her to come back.  During her time away, our baby was diagnosed with OPSOCLONUS MYOCLONUS SYNDROME and was hospitalized for 2 weeks.  There is no way I could have handled G and being 4 hrs away for 2 weeks.  I also had surgery and was able to recover.

When time grew closer for her to be done and come home…..I had already mentally and physically prepared it.  I had already set in motion a few places that she could go because I anticipated that things would not be different.  It broke my heart, but my other kids were afraid, the baby was not well, and I was spent.  I had had enough and my tolerance level was in the negative.

Bart went to go and get her….well, go to the graduation and then bring her home.  I was only 2 weeks out of major surgery.  My big girls had to work and my sister watched the baby.  They got home and after an hour or so, she made her way upstairs to my bedroom, where I had been resting.  It was not a “Little House on the Prairie” reunion.  It was stoic and tense.  I laid out the law for her.  I was not going to yield, I was not going to put my kids in danger, I was not going to deal with what I had been dealing with.  It was a one strike and you are out policy.

It has been 2 1/2 months since she has returned home.  In that time, I can count on 1 hand how many times I had to have a conversation with her or correct her.  I can count on 1 finger how many times things escalated to an almost point of no return.  For the most part, she has been able to self regulate.  She is NOT medicated.  She was on a lot of medication and mood stabilizers before she was gone and during most of her time at military school.  I took her off of two before she left and she ran out of one at the end of her time there.  When she came home, I was recovering, Bart didn’t know where her meds were and neither did she.  She has done incredibly well, shockingly enough.

I once thought she had torched those bridges and relationships with her family…like ashes and then a wind storm and it blew the ashes from here to there.  I now see, that she just singed them pretty well.  It has taken a bit of time for some of the kids to warm back up and allow forgiveness to take place, but there is still healing.  Her relationship with Big Daddy has gotten a bit better.  She accepts discipline, she self regulates, she is getting her schoolwork done, she is quick to do what is asked, and she laughs again.  We all do.

For a gal that is 5’1″ tall…she gained weight while she was there.  Since she has been home, she has been continuing her PT twice a day and we’ve thrown in a 3 mile walk several days a week.  She has lost 14 lbs since being home.  Her skin has cleared up, she is learning proper eating, she has stopped stealing food/gorging, she has cut out soda, and she has learned portion control.

All in all military school was not as disciplined as I thought it would be, but God is bigger.  He gave us all a time apart to gather ourselves and to realize that, somewhere deep down, there was still love.  Don’t get me wrong FASD still sucks.  RAD still sucks.  I have to “parent” her more than what I should, if that makes sense.  Chronologically, she is 16 but mentally/emotionally/physically she is between 8-13.  It just is what it is.  I’ve accepted it and she has accepted it.  She just asks a LOT of questions and I don’t get irritated because I think she “should” know the answers….because she doesn’t.

I feel like a huge cloud has lifted off of our family.  I know that it will not always be easy.  I know that we will have bad days, but I also know that I remember why I chose her, through adoption.  Her eyes sparkle when she smiles.  She is tenacious.  Her laugh is infectious.  She tries really hard and she is wonderful with the baby (most days).

So, this is what it is like to have 7 abnormal kids 🙂

Maybe, I need 8 abnormal kids…..who knows…..

 

 

 

All I Can Do Is Try

I tell my kids, often, that I would rather them try 1000 times and fail then to never try at all.  Yet, I do not take my own advice.  Funny, how I lay here, in my bed at 12:14 am, and think these things.

There are many conversations that I have, with myself….sometimes I even answer myself back 🙂  I was thinking about my daddy, today.  How proud I am of him.  How much I love him.  How his marriage with my mom are marriage goals (sometimes).  How dedicated he has been to his career….even to a fault, almost.  How he turned his life around.  How he overcame a stroke and quadruple bypass surgery.  How he loves my mom well.  How he cares for us kids.  Today is the 20th anniversary of a tragedy that struck our community.  This event changed my daddy….to the core and what was anger at that, many moons ago, yields intense respect for him now.  I get it.  I understand, as much as I can since he was there and I wasn’t.  I lived it through his eyes….as best as he would let us because he is so guarded.

Then, in that same post, I mentioned my brother.  My brother is 10 yrs older than me.  He would, in a heartbeat, lay down his life for me or my children.  I have no doubt about that but we have never been close.  We love each other, yes….our family is more of a tribe and we unite when we need to unite.  He loves differently than I love.  We are just 2 different people.  We do not see eye to eye on so many things, but today, watching the dedication on television of a new memorial dedicated to this event…..my brother worked on that.  He went early and he stayed late.  He was chosen to be a part of history in our community, yet no one will know the names and the faces of those who worked so hard to bring honor to those hurt and lost.  He was one of those people.  I had such pride at the knowledge of what he does for a living and how talented he is….while barely saying a word about it…..he remained silent.  Never complaining.  I wish we were closer.  I wish he could see me in a different light and that he could get to know me as an adult….who I am, what I am about, and what I believe in.  I want to know the same things about him.  It is what it is.  He loves me and that is all I need to know……I love him and I hope he knows that.

So, while I was talking to myself….I thought….all I need to do is try.  Succeed or fail, my parents taught me to give it my all.  My mom gives it her all ALL the time.  She never stops.  Sick, wind, snow, snot, she is going and doing her best at all that she does.  I need her, she is there.  I have surgery, she is there.  I need a body to make a long trip, she is there.  I need fried chicken…she makes it and hides it.  My children adore her (and my dad of course LOL) and I’m blessed that I can give the relationship with my parents that I had with my grandparents.  Family.  It is so  important.  As my daddy would say “when everyone else goes back to the barn, I will still be there.”

I am going to listen to myself and I’m going to step out of this intense grief, sadness, loneliness, irritation that I find myself in and I am going to try.  I am going to try and be more present with my husband and children.  I may even TRY golfing cause Big Daddy loves it.  I want to play cards more and be on facebook less.  I want to teach my kids how to run a home.  I want to get involved in my church.  Make efforts with my few friends.  Dig back into Scripture.  Lose the weight I’ve been talking about for 10 yrs now.  I want to be the change that I want to see, in this world.  Seriously, who is to stop me?  If God is for this….no one can be against it.

I keep thinking 1/2 or more than 1/2 of my life is finished……..what am I going to do with the rest of it.  Sit back and watch it flash by.  Keep my nose in social media instead of my eyes on my children and husband?  I may fail but as long as I do something daily to TRY, then I will call it a successful day.  I have proven to myself that I can do something.  I can stick to it and I can make a difference.  We just paid our van off, last month….3 yrs early.  We did this in 4 mths.  We can do it.  We can be disciplined.

I choose to try.  I choose to believe in myself.  I choose to allow God to work through my shortcomings and my depression to make a difference.  I choose to continue to try and work on my relationships with my family….my brother.  I choose to see 2 sides of the coin and try to understand different view points of a situation.

It comes down to this.

I.  Choose.  Joy.

Wanna come along for the ride?

That Moment…..

When you have had a good day.  You have worshiped Jesus with like minded believers.  You have snuggled with your family, taken a good nap, got sugars from an amazing 3 yr old warrior…..and then, like an iron skillet to the face……it hits.

A wave of depression.

A wave of failure.

A wave of insecurities.

A wave of realities.

A wave of irrational thinking.

A wave of tears.

My Lady always fussed at me because of my “stoic” facade.  She would always tell me, especially when she asked that I recount the moment when she had her stroke and the year or so afterward, because I would fight back those tears.  She would hold my hand and just tell me to release my emotions….that it was cleansing to my soul and that there is no shame or judgement if I cried.

So I cried.

And she would hold my hand…hand me tissue…and then ask me to repeat the story.

We went through that routine about once a week until she got really sick…and then she stopped asking.  I cried every single time.  There was not a moment that I did not break down into tears.

When my Lady died….my person died….my confidante….my friend and what seemed like my only friend.  I could jot over to her house in 3 minutes…..and be fulfilled and ready to tackle the world.  I had a chair.  I had space.  I loved her ice cubes.  I would crunch and she would advise.  I would lay my head in her hands and know that I was loved, understood and prayed over.  I had no one to cry too.  I had no one that I could confide it.  I had lost my person.

Psalm 56:8 says You keep track of all my sorrows.  You have collected all my tears in your bottle.  You have recorded each one in your book.”  How humbling is that that my Jesus (and your Jesus) collects ALL our tears in a bottle and He records them.  There is not one tear that He misses.  That humbles my heart.

I am still stoic, to a point…my mama always said she knows that I’m stuffing stuffing stuffing down my emotions until there is one little thing that breaks me and then WHAM I am letting it ALL out.

I texted her, late one night and all it said was “I love you, mama.”  That was it.  Nothing fancy, nothing indicating anything was wrong…just a simple statement.  No more did I hit send and the phone was ringing….I rarely call her “mama” unless something is wrong and she is so tuned into me that she knows that she needs to diffuse, listen, encourage, pray and sometimes let me cry.  She’s good like that.  There are times when I just need her.  I need her love.  I need her support.  I need her to listen.  I need her to let me cry and then I need her to tell me to go and wash my face.  I cannot or do not want to imagine my life without her and the unconditional love that she supplies me every single day.

Today was a good day.  We had an excellent service.  We came home and all was well…until it wasn’t.  I had that wave roll over me and I sat, in my room, unable to breathe.  I felt my tears welling up and I just pushed them down until I just couldn’t anymore.

Big Daddy came up and we laid down and I talked….he patted.  I cried……he patted harder.  I snotted……he patted even harder.  I just told him how I felt like such a failure, as a wife, mom, sister, daughter, friend….how alone I felt.  How I was 1/2 way to 80 and I have wasted my life.  He, in his sweet self, informed me that I was *more* then 1/2 way to 80, that I was almost 1/2 way to 90.  Good pep talk, Big Daddy….good….that comment made me cry even harder.

Then it all came bursting out like the water of a broken dam.  What would I do if he died and he left me all alone?  Why did I start watching a movie that I knew scared me and now I’m afraid spiders are in my bed?  Why doesn’t he love me?  Does he hate me?  Do my kids hate me?  I’m worthless.  I’m useless.  I have accomplished nothing in life.

Pity Party:  Party of 1 please….your table is ready.

There is Truth that I MUST remember…..

What does Jesus say about me?  In Psalm 139:14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”  If I want to get REALLY technical…I can throw it back to Genesis 1:27 with “So God created mankind in his own image, in the image of God he created them; male and female he created them.”  I was created in the image of God.  He created me to look like Him!  

How crazy is that?

So, knowing that….why do I have these waves?  I don’t know why I get in these funks.  Maybe it is still working through the grief I feel, but then again, my Lady just recently went home….and these waves have come for as long as I can remember.

It is that battlefield of the mind…..satan has wreaked havoc on my emotions and mind.  I have felt the closeness of Jesus all day long and then BAM….out of left field comes a wave of blech.

I am so incredibly thankful for my husband.  He is a steadfast rock to my shifting emotional sand.  I am thankful for new beginnings.  I’m thankful for what Jesus did on the cross for me.  I am thankful for Truths.

Tomorrow is a new day full of new beginnings.

We all have the same 24 hrs in a day.  Will you allow satan to have a foothold in your thoughts or will you choose to capture your thoughts with the Truths of Jesus?

Operation “Get Life Together”: Releasing Control

I have been homeschooling for a long time.  I mean a long, long, long, Long time….like really long.  I am a pretty strict homeschooling mom.  I have my list, according to the KY state standards, and we do not deviate.

We do cursive.

We do LOTS of reading (it is a love for all my kids).

We do LOTS of history (it is a love for all my kids).

We do the mandatory math (7th level of Hell according to all who reside in my house).

We do Bible.

We do Science.

We write.

We do Language, Grammar, Spelling……

We do it all.

My oldest two daughters and my oldest son were born under the heart.  Victoria was born talking our ear off….knowing her alphabet at 14 mths…spelling her name at 18 mths…reading early.  Alyssa is my creative child.  She can put words to anything.  She can write beautifully and has always been very articulate.  Noah is the math/science/history kid.  Loves loves loves it.

I am a stickler.  I want all my “t’s” crossed and all my “i’s” dotted.  My kids will attest to that.  I have a routine that has stood the test of time, all these years….I do not like change.  I do not like to yield.  I do not like to change things up.  I like what I like.  I know what I’m good at.  I know what the kids are capable of and I want them to know that they can succeed if they put forth the hard work and try.  That’s all I ever want them to do is try.  Do their best….even if it is a D….if they studied and did their best, then that is great in my book.

Then………came my kiddoes born in my heart.  The early years were spent learning our alphabet, our numbers, our address. What sticks out in my mind is the inability Daniel had to remember our address, our phone number, how to write his letters, learning the alphabet…just so many struggles.  His speech and hearing played a lot in that.  We did 2 sets of tubes, put him in preschool, started speech when he was 2 1/2.  I did everything I know to do.  Nothing seemed to work.

Grayce, on the other hand, has the attention span of a gnat.  She could not “do school” with the other kids.  She needed NO distractions (drapes and blinds down), no noise (we had to be like mice), nothing on her walls to look at, nothing in her room, for that matter.  She HATED doing the work and it was like pulling teeth with no medication to get her to do it.  She failed every single test (except for Spelling and Reading Comprehension).  I could not figure out what was going on.  Her math skills…..whoa Nelly.  Just horrible.  We got her tutors (thank you Mr. Brodsky), we did CDs, we did flash cards.  Nothing seemed to work.

Jude…..he came to America when he was 5.  Much of that first year was just learning to live in America.  Learning our language.  Learning to trust us.  We sat, a lot and watched Iron Chef America.  That is our thing.  A movie comes on and he gets as close to me as humanly possible…even at 11.  Then we worked on our alphabet, numbers, basic Kindergarten stuff.  It was hard.  Good gravy.  They say that for however long a child was in country is how long it takes for them to acclimate to a new country.  That is SO true.  So.  Very.  True.  There are certain concepts (Grammar) that is so hard for him.  I mean, it is so hard.  I bought word puzzles.  Did crossword puzzles.  Videos.  Set it to music.  Nothing seemed to work.

There is a world of difference between children who were wanted, loved, cared for, fed and children who suffered from neglect and abuse or a child whose sweet mama did all she could for him but did not have access to proper health care in order to take care of him.  That is a learning curve….for me.  It also teaches me to release the control that I like to hold onto so tightly.

This year….I have decided to release the reins.  I decided to walk into the enemy’s camp and still back my joy of teaching and molding their education to suit their individual needs.  I want to have fun.  I want them to have fun.  I want to meet their “required” needs but do it in a way that they do not hate learning.

So….with that being said.  Noah’s course of action will remain the same.  We will be scheduling him to take the ACT and his driver’s test this week.  I also plan on applying to Murray State Racer Academy in the spring.  We were aiming for the fall, but ya know, life happened.

Grayce, we are doing LOTS of reading literature (British and American) and lots of writing.  She loves to read and she loves to write.  We are stepping back on Algebra.  This part, we are just going to make sure she has an excellent handle on basic math, counting money, counting back money, etc.  She has FASD and the part of her brain that is affected is abstract.  She is *very* concrete and that is okay.  She just thinks and learns differently than us.  Our main goal, for her, is to get used to her living at home again.  She was at military school for 22 weeks.  It was a break that we all needed.  She is adjusting to home very well.  She knows her boundaries and she is confidant that she can be under authority.  It has been nice.  We will, of course, do Science but I will probably not test in that area because her testing skills are not great.  History, however, is good for her and that will continue on a typical high school path.  Bible will remain the same, as will Grammar and Language.

Daniel….I am gearing EVERYTHING to wars….to the military…..to history.  This kid cannot spell, he cannot remember the same chore he has had for 7 yrs, but he can tell you the history, with accurate detail, how the mountains of Hawaii were formed.  What countries were involved in every single war.  Every.  Single.  War.  This is our golden topic.  I am laying off the spelling.  I got him a little gadget for dyslexia that helps with that.  His penmanship is phenomenal.  I have also bought Dragon software to help him write.  It is all through a microphone and a computer.  Math…he is on target.  History…blows it out of the park.  Language, Grammar, Spelling………we are close to being done.  He knows the basics and we will move as far as he can, but realistically, he has FASD and he is also “low functioning” so I’m not discounting his abilities….we do a lot of lego work (I will definitely post a video of some of his inventions…they are wonderful), reading (real books and audio books for the classics of Literature), Bible….everything else will be a unit study created around military stuff.  It’s working

Jude…..he is now on target.  It has taken some time and he is still behind a bit in math, but for the most part….we will move forward with how I teach the other children.  He is heavy into reading and he loves math (though he goes a bit too fast and makes silly mistakes).  He is a beast at spelling and he has an insatiable love of learning.

Hunter……….we just read and play 🙂

All in all…it is gonna get done.  My kids are going to be well rounded, well socialized (yes, homeschoolers can be socialized and not awkward), and they will be educated.  Some are going to college…some will go to college….some will go to beauty school….some will go to trade school…God has their lives planned out.  He had it planned before He created the Earth.  He knows their beginning, middle, to end.

I just get the privilege of raising all these wildly different kiddoes.

I am blessed.

Operation “Get Life Together:” Mini Financial Update

When we began our journey to financial freedom….well….it is kind of like a diet, we never stick to it and instead of losing a lot of weight, we triple our weight.

Tis the life.

I believe, though we have broken that bitter cycle because we are seeing MASSIVE improvement in our finances.

Are we still living paycheck to paycheck?  Yes.

Are we still doing a zero based budget?  Yes.

Do we flub up and eat out because we spend most of 2 weeks in a nursing home, funeral home, ER, and hospital?  That’d be a big ol yes.

BUT

I sat down today (it is payday) and I got out all our envelopes and my notepad ready stuff those biweekly envelopes and see how much money we have left to pay on our van.

Our van has a payoff of 3 yrs.  It was a 5 yr loan.  We have been paying on it for 2 yrs.  The minimum….cause that’s what you do when you buy a lot of nonsense and do not know where your money is going.

We started our ZERO BASED BUDGET back in September 2017.   As it stood, then, we had:

Van payoff 2020. 

A student loan payoff of 2027. 

An equity payoff of 2022. 

And a house payoff of 2037 (I think it was 20 yrs…might have been 15….or was it 30….you get the idea though).

Right now, on October 13, 2017…due to LOTS of sacrifices, selling an exercise bike, Big Daddy working overtime and taking control of our money again…this is where our payoffs stand.

Brace yourself.

Van payoff will be DECEMBER 2017 

Student loan payoff will be DECEMBER 2018

Equity payoff will be DECEMBER 2019

House payoff will be DECEMBER 2022

Can you even?

CAN.  YOU. EVEN?

I mean COMPLETELY debt free by 2022. Now, of course, this does not account for any surprises, but most of the surprises, we have take out money for in our zero based budget plan.  We call it a “sinking fund.”  Anything that we perceive to be needed or could happen, in the future, we are saving for…plus we have a little emergency fund that we can rely on.

Even if we have to delay being debt free for a couple of years….we are still WAY ahead of the year 2037….that is a 20 yr difference.  That is saving interest and not paying a boatload more in interest rates.

God is good…..even through my last hellish 3 yrs….He is good.  We are trying to be obedient and, yes, we are making sacrifices because we are not choosing to serve two masters anymore.

 

Turning the Page of a Book to a New Chapter

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Welcome to this new chapter.  I could’ve cropped this picture to show a close up of my baby’s beautiful smile, but when I saw his hands….I thought….nope, this is real life.  Behind that smile is fear, excitement, worry, anticipation, exhaustion, and hunger.

My baby came to us when he was 5 yrs old, after a long intense battle to bring him to America.  Being a child of color, older, and a boy his odds were against him ever getting adopted.  See, little black girls turn into sweet gorgeous black women.  Little black boys turn out to be thugs, murderers, etc.  There is a sad stigma and that does not mean it is just in America.  There is racism in the country of Ethiopia as well.  If a male child is 3 or younger and “caramel” colored….he is a good child to be adopted.  If a male child is 4 or above and darker….well….that is a lot of odds.

How can one look at that face, those eyes, that smile and say he is going to be ANYTHING but a child of the King and a warrior for His kingdom.  This baby………….this baby………..I cannot even.  My heart simply bursts with love, pride, gratitude, and thankfulness for what the Lord did in our story.  I seriously cannot even.

We did not know he was deaf for almost a whole year LOL.  He was learning the language and learning how to live in a family and acclimate to the USA.  That was his only job.  To learn to be loved, to know he is safe, to help him with his loss and grief of not being with his family and his beautiful country.  He was, at one point, trilingual.  He was LOUD.  He could speak and worked hard at his broken English until he mastered it.  After almost 6 yrs, he stills says a few words wonky LOL.

On his birthday, my mom calls to sing to all the kids.  She always calls in the morning.  I answered the phone and I knew it was her, so I went ahead and called him upstairs and I handed him the phone.  Now, remember, he is an Ethiopian who had only be home for 8 mths.  I put the phone up to his right ear so he could listen to her sing.  When I did, he said “mommy…I no hear in that ear.”  I laughed and said he was a funny boy and I put then phone up to his right ear again.  He said “mommy, I no hear in that ear.”  He switched ears and smiled as she sang.  He is a man of little words so as he was grinning (he thought she could see his approval), he handed me the phone.  I was sitting there, with my mouth opening, looking at him like he an eyeball that had just sprouted up on his forehead.  I held the phone and I could hear my mom speak, but all I could say was “what do you mean you can’t hear in that ear?”  He said “I no hear in that ear.”  I could’ve caught flies with my mouth.

I put the phone to my ear and said “Martha….he says he can’t hear out his right ear….I gotta go and figure out what the heck he is talking about.”  We got off the phone and I looked him square in the eyes and said “WHAT THE HECK DO YOU MEAN YOU CAN’T HEAR OUT OF THAT EAR?”  He took his hands….clapped them on my cheeks…pulled my face nose to nose with his face and said “MOM, I NO HEAR OUT OF THAT EAR.”  I asked if he heard out of that ear in Ethiopia….he just waved his hand like it was nothing and he said “No.  I no hear in that ear in Etopia (that is how he pronounced it).”

I think I sat there staring at him for 30 minutes.  I’d plug one ear and talk…he could hear me.  I would plug the other ear and talk….he could hear me.  I did not get it.  At all.  I turned all the fans on, made him turn around, and I whispered…he heard me.  I am stumped.  In a last ditch effort to understand what was going on, I got in the van with him, turned up the radio, lowered all the windows and whispered…he heard me.  Either he was insane or I was insane.

I took him to an ENT.  We did hearing tests…he was in the “sound proof” booth and the lady said some words and he repeated while one or the other ear was plugged….he did it.  She said he was fine.  In another moment of “I am such a bad parent because if he is hard of hearing in that ear, I didn’t know and didn’t do anything about it but the audiologist said he was fine but I want a second opinion from a friend because she is good at what she does and she is free and I will leave this alone if she tells me that he is fine I will just assume I am nuts and he is nuts and we are all just nuts.”  Yes….that is the long run on sentence that took place in my head.

I headed to see my friend Susan Brown.  She did all her of her initial stuff and then put him back in the booth.  I sat in the booth with her.  This time, was different.  She said things, but she covered her mouth.  When she did that, we discovered that he is stone cold deaf in his right ear.  See…..what I didn’t realize was that he was reading my lip and everyone else’s lips.  Most people are deaf from either their outer ear to their eardrum OR from the eardrum to their brain.  Jude is deaf from the outer eardrum to the brain.  He has all the mechanics of a “good” ear….he is just deaf.  We are guessing he was born this way, which explains SO much.

When I took him from Susan to the NEW ENT…Jude was pretty stoked.  I told him we were going to see Dr. Jones.  With his wide eyes….he said “we are going to see DR JONES?”  I said yes we are…he is going to check your ears.  I asked why he was looking at me like that and he said “Dr. Jones?  As in Indiana Jones?”  I smiled and said “No, Dr. Shawn Jones.”  Let down.

As we were talking, I asked Dr. Jones if this could be hereditary?  He said it could be and why do I ask.  I explained to him that my mom was born without a bone in her ear and that she was deaf.  I told him that she had surgery and they placed a metal plate in there and now she can hear.  At that moment, the dr was staring at me, the nurse was staring at me and Jude was silent.  I couldn’t figure out the silence.  Dr. Jones leaned WAY in to me and he said “Brandi, is your mom black?”  I said “No.  She is a little short redhead, why are you asking me if she is black?”  He smiled and said “Brandi….your son is black.”  Duh…..I forgot.  I don’t think about things like that so I was felt pretty stupid.

Well, after many visits, many types of hearing aids that did not work….learning some sign language to help him in crowds…..5 years later…..yesterday was the day we turned the page to a new chapter.

Yesterday, we were in Louisville for Dr. Severtson to perform a BAHA surgery.  Now, normally this surgery would have a titanium screw and in about 6 mths or so, once it is healed, you *snap* a hearing aid on behind your ear.  The sound bypasses the ear canal and goes straight to the brain.  The post requires A LOT of attention and maintenance.  We were going to do that because, the older Jude gets, the more it bothers him about his hearing.  I get that.  Our dr was recently approved to do a new type of BAHA hearing aid.  Instead of the titanium screw, he put in a magnet.  This takes 2-3 mths to settle in and heal.  Once that is healed, we go back for the processor.  His hearing aid will also have a magnetic on it and it will just stick to his head, behind his ear and it does the same as the original.  This is good because there is zero maintenance.  You get your processor quicker.  He is the first in our area to receive it, so we can hopefully help other families.  More importantly, he will be able to hear out of both ears for the first time in his life.  How freaking cool is that.

The recovery is not fun.  He has to keep his head wrapped for 3 days and not wash his hair for a week or so, but in the end…..it will be awesome and that is what I have to remind him.

I am so stinking excited.  He is excited too, but he is hurting pretty good and his incision site itches….which is driving him bonkers.  All in all……welcome to his new and improved HEARING story 🙂

Wisdom from a 3 Yr Old

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Meet Hunter

The day after I came home from my hysterectomy, he was missing his mama because I had been upstairs resting.

Every night, before bed, Hunter crawls up in the bed with me and we snuggle.  This particular night was no different, but I warned him that my belly was hurting.  To help in his understanding, I showed him my bandaids on my belly and told him he needed to be gentle.

In his wisdom, my sweet baby looked up at me and said “Mama, we need to put some oils on your belly to feel better.”

Uhm, yes we do, sweetness……I have officially become an oily mama with an OMS baby who LOVES his oils.

Love that I’m teaching him about alternative ways to help heal and nurture our bodies with natural solutions instead of synthetic medications!

BTW:  He chose wintergreen for me to have on my belly 🙂

Closing the Chapter of My Life

I had a small moment, yesterday, and really it is quite silly.

As I was in the bathroom for the umpteenth time, my brain (and emotions) got the best of me.

I realized that I had just permanently closed the door to ever carrying a child, in my womb, again.

Like ever.

Not that I wanted too carry another child.  I knew (know) the risk to my health and I know my age, but we have always regretted our decision to get Big Daddy’s vasectomy 13 yrs ago.  We felt like we took matters into our own hands and we did not leave them in the hands of God.

My friend is due to have her son, any day now.  It is such a beautiful thing to bring life into this world and I am honored to have brought 3 lives into this world BUT it does not take carrying a child in your womb to become a mom.

Maybe the Lord is stirring in my that we are not done yet.  That this is the close of one chapter, but another chapter is opening up.  In my mind’s eye….it seems like it is a stretch to bring more children into our home.  We have no room, we do not have enough beds, we have kids with some serious needs that we are addressing…

But…..

What if He takes one mountain from the Atlantic Ocean and crushes it into the Pacific Ocean.

Hey, it could happen 🙂

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