Wednesday, March 15, 2017

The memories that shape our lives and relationships.

I want to say, walk away.  
Keep scrolling.
Do not read this.
Why do I feel compelled to give that warning?
Because of the content.  Because of various worldviews, values, beliefs that every person has.
This post deals with working through the grief and the loss of my father.
This post deals with memories that make me smile.  And how is that bad?  Or wrong?
Well, it is not.  To some it will be.  To me, they are simply endearing memories that made my father, my father.   Memories that helped shaped my love for him, my view of him, and my view of the world.

This post is my reality.  
Let me be honest.  This post also deals with "drug" use to some degree.  Pot, MJ, 420, reefer.  Whatever you call it, if you feel that in all circumstances, no matter what, it should never be used then this post will not be for you.

It could cause you to look at me differently.  It could cause you to have your own beliefs challenged.  It could cause you to judge my father as a bad person destined for hell, without ever having really known him.

So you've been warned.  If you stay, read with an open mind.  If you planned on reading all along and understand, thank you!
No matter what, I hope you all see my heart.  See what I see, understand why experienced what I did.

During my father's celebration of life I asked if anyone had any memories of my dad, to share.  I loved hearing hearing the stories because I had forgotten some.
My cousins, Missy and Zach shared about playing at my late grandmother's home in the 'scary' basement, with all the adults upstairs.
We all use to race up stairs because no one wanted to be the last one in that basement.  Missy shared about how the adults would laugh as one of our aunts [Fancy], would put on this frightening Halloween mask and come down and scare the crap out of all of us.
We knew it was coming but every single time we still got spooked, and ran screaming.

Those were fun days.  Spending weekends with my father, visiting my grandmother's and playing with my brother and cousins.

A touching memory that I had no idea about was one that my cousin and brother shared.  Apparently being naughty children, they set a bed on fire.  My dad ran up and saved them by pulling them out of the burning room.
Ironically enough my cousin Zach went on to be a firefighter and has been doing that for 17 years now.

It came back to me and I started off honestly, similar to what I have done here.
This memory isn't for everyone.  BUT it is a part of my life and it IS for me.

One of the fondest memories I have of my father is when I was about 13 years old.
Now remember, my father was truly the "Make love, not war, hippie."  And I LOVED that about him.
I remember my father, some other family, and friends of theirs sitting around in a circle in someone's home.  We kids gathered around outside of the circle, playing, laughing, living.

Now you've seen the picture above of the roach clip with the feathers on them.  These were a big thing back in the 70s and 80s, and often little Park Fairs in our area would sell these as "barrettes" for your hair.  But we all knew what they were for!

The adults popped a joint into the roach clip, lit it, and passed it around the circle.  As they did, they talked about many subjects.
One I remember was about why there is war, why all the hate.
And I remember my dad saying he couldn't understand why it was so hard to just love each other.

And there I was.  13 years old, and that message just permeated my soul.  It shouldn't be hard.  And I wanted others to know that too.  I wanted others to believe that.  That we are all connected as human beings.

Now I had always been brought up with that message.  My mom was very much a love and accept all people teacher.
There was just something about this particular moment that showed my father in a new light in my eyes.

And there I was, 13 years old, learning from my father, appreciating, the peace loving hippies, and seeing no wrong in that.
I still see no wrong in that.  However misguided many may think that is.

The occasional pot use I have no issue with.  The medical use zero issue with.

And let me clarify that in all this, I have never once tried pot.  Not because I disagree [obviously I do not].
The only reason is because currently it is illegal in almost all states.
And because of political crap, one could lose everything over smoking one joint.
But I won't get into politics now.

Now the alcoholism addiction my father struggled with for the greater portion of his life, breaks my heart.  There were periods of sobriety and joy, and periods of addiction and depression.

But this wasn't my father.  
What I mean is, my father was so much more than his addiction.  I know what he believed.  
I know the love he had inside of him. 
 I also know the darkness.  I struggle with some of that darkness myself.
 And it's not always easy to navigate that here on earth.
It doesn't make him bad.
It doesn't make him lost.
It doesn't make him "Oh poor Nolan."
It made him human.

I think sometimes with the death of the physical body here, finally the spirit, the soul, the consciousness is free from that addiction and can go on to that Great Love and possibly nudge others left behind to not make similar choices.

I am happy to have "taboo" memories that instilled in me how my father's gentle spirit really did care for a great many things and people on earth.
I am sad that he had such a tough journey here on this earth.
And now I am grateful that those chains of addiction are broken and he can be at peace, and have the peace he desired.

These are memories.
This is my love for my father.
I choose to believe in the love.
In the broken chains.
In the peace that can come even after death on this earth.

Saturday, December 17, 2016

Surviving in darkness, reaching for light: The toll of depression.

I would have never even given a second thought that I'd still be battling depression 5 years after originally being diagnosed.
I started treatment and felt great for a couple of years.
Now, I *thought* I was doing well the 3 years after that.  I didn't recognize the slip again.  The slip into depression's waves and tides, the grasp it takes and slowly pulls you down, is often subtle and unnoticed until someone or something makes you take notice.

This has got to be one of the hardest posts I have ever done, one of the most heartbreaking for me.

There was no one moment, one day, one week where suddenly I was swimming in the depths trying to reach the top.  It was a slow dissent.  A thought here, a misread conversation there, an over analyzed look from someone, small situations, all that began eating away at simple sanity again.

I wanted to believe that the first time around, the medication treatment, and the attention to it that my mind was brought to, would 'cure' it and my life would go on.
I had no real idea that it would become something that I'm going to continually have to battle.

I remember days of feeling as if I had lost all my friends.  I remember the sadness I felt as I believed they had pulled away from me and went on with their lives without me.

I remember days of analyzing conversations in my head over and over and over wondering what I had done, or said, to push people away.  All the while not realizing it was I who pushing them away.
It became to easy for me to go inward and shut everyone else out.

It became normal to feel as if no one cared, especially as we dealt with David and his special needs.  It became normally sadly to push even my husband away, slowly, over time, until he was shut out completely.  All the while thinking that he was to blame, when it was my own battle causing me feel things that were not true.

Depression is hell.  It's a hell where nothing is as it seems.  The loneliness for me was self induced even though it appeared it came from everyone else pushing me away.

As I look back now I can see the patterns.  I can see that the summer of 2015 when David was diagnosed with his auto-immune disorder, that my dissent became deeper.  I didn't realize it then.  I realize it now.
For over a year, I lived in a personal hell.  As David's condition became relentless and showed no signs of remission, no response to treatments, I dived further into feeling so alone, so abandoned, so overwhelmed.
I know now people reached out.  I know now, I refused help.
Then, I felt they didn't mean it.  Or the "right" people didn't reach out.
The year moved on, it seemed the world was just against my son, myself, my family.  I had removed myself mentally and emotionally so far from my husband most importantly, but also family and friends.
I was so far...gone, I didn't know how to come back.  I didn't realize I needed to come back.
I thought several times how easy it would be to put the kids in the car and just drive and drive, to anywhere but where I was.
I thought several times of leaving alone, to be anywhere but where I was, dealing with what I was.

2015 passed into 2016 and for a couple of months there was a little light but that grasp was so strong and I was pulled back in.
I hate depression!
The downward spiral became worse.  I had never felt more alone.  Even with the arrival of my mother and sister back to the United States, I felt I had no one.  Of my own accord again, pushing all away.
I didn't know how to accept help.  And it was easier for the depression to take hold and believe no one wanted to help.

The summer of 2016 brought deeper sadness, deeper darkness.  A trial by fire truly.  A situation occurred that a few now of, it doesn't matter now what, because it's in the past, it's forgiven, we've moved on.
However, when it occurred I can honestly say I was at my darkest night.  I remember that evening and night more clearly than I ever wished I did.
I had never felt so alone and deserted than I did the day the situation came to a blow.
That night in a quiet house, I lay in my bed trying hard to will myself to sleep.  Sleep would not come.  I had just started my new job teaching, and the next day was the first day for students.
I remember thinking how am I ever going to make it through the day.  The sadness from the situation had taken over me.  I couldn't even think about teaching much less how I'd ever facet the morning.

For the first time in my life, I did not want to face the morning.
My thoughts drifted to how easy it would be to end the pain I was feeling.  I lay there thinking of the medicines I had in my home.  I imagined which ones I would go get and saw myself dumping the pills in a pile and then lining them up to take.
I thought how I'd not have to feel anything anymore.
Never I had been in this position.  Never had I thought of ending my life.  Never had I believed it was an answer.
But that night, I felt it.  I felt the despair.  I felt the sadness.  I felt the utter abandonment created in my mind.  I felt the loneliness.
I did not want to live to see the morning.  I didn't want to face the pain and the choices I'd have to make in the morning and the following days.
And then...I looked over in the bed.  There lay my sons.  David and Aaron were fast asleep, no knowledge of what had taken place.  No knowledge of what their mother was thinking.
I wept.  I wept all night.  I didn't sleep at all.  I couldn't leave them.  They were the one reason I had to go on.
The sun came up, the sadness and heaviness of adult choices still loomed, but I was able to get myself out of bed for my sons.
That was a turning point.  I sat on the edge of the bed a moment and realized that the night before was a wake up call.  I was not healthy.  The depression still remained.
The coming days and weeks brought healing in some ways [to my marriage and life], but it brought a tough realization that I will never be "free" of depression.
That it is something I will always have to keep in check.
I made an appointment with my doctor and began therapy as well.  I realize about 4 months have passed and so many times it seems like a lifetime ago.
Each day, each week is still a step forward.  However not without fear that the cold claws of depression will try to drag me down again.

Safegaurds.  I can't imagine going through the journey of depression alone.  I can't begin to imagine how people who truly are alone, do it. And sadly, often they don't make it out.

I say safeguards because now I understand some things to look for.  I have my husband, my family, my friends look out for me.  If they recognize anything, it can be brought to my attention.  If I don't or can't respond properly, I've advised that they get me somewhere for help.

If you feel hopeless often, alone, like you don't want to go on, please please please now that you are NOT alone.  You CAN reach out.
If nothing else I am always here!
Call your doctor.
Call a friend.
Call family.
Call a hotline.

Don't ignore feelings of depression, hopelessness, or suicide.
While I'm a firm believer in prayer.  please know that prayer alone will not help.  It's great when people say they will pray for you.
But please, please get professional help.
DO not get to a point that I did.  I shutter to think what might have happened had my sons not been sleeping with me that night.
It is OK to talk about it.  It is OK to scream about it.  Do not be embarrassed.  Do not think that others will think less of you.
You are NOT alone.  Ever!  People do care.  I care.

Suicide Hotline

Tuesday, July 26, 2016

Marbles as friends.

I stood at the sink absent-mindedly doing dishes.   A million thoughts running through my head of upcoming doctor visits, blood draws, back to school shopping, grocery lists. 
I'm on auto-pilot as David comes into the kitchen.
DAVID: "Mom, have you seen my marble that was on the breakfast bar?"
ME: "Yes I put it in the basket when I was cleaning."
DAVID: "There it is.  I painted a face on it mom."
ME: "Yeah I saw that!  It was cute."

DAVID: "I did it because I don't have any friends, so I made one."

Then he hurried off back to his room and I began hearing the clank of marbles.
I stopped doing dishes and absorbed what he just head.  My heart broke again for him, my eyes filled with tears and all the issues associated with Autism came flooding back, as it does almost daily.
A feeling of loneliness and friendlessness is common among ASD children.  David is no different.  His social awkwardness drives many away.  He doesn't mean too.  And believe me we do teach him daily about social cues and such.
Though ASD children can learn and adpat, it can take years to do so.  In the meantime as he makes baby steps, he still loses friends.

I can't lie, a feeling of failure as a parent washed over me as well.  Though I know it's not "my fault", it's still hard to get the heart to believe it. 
Like any parent these are the times that you wish you could wave a magic wand and make it all better.  Yet that's not reality and life goes on.

I'm thankful for the few friends that he does have.  And I'm saddened when his social awkwardness pushes others away.  What I as a mother see as silly or even endearing, often is annoying and a put off to others.  I know that.  I accept that.  But I wish it didn't have to be that way.

You see, I know that David is smart, funny [even when he doesn't mean to be], curious, and creative.  In between the constant chatter, meltdowns, and an inability to read people in social situations there is this boy that can make you smile.
I hope one day as he grows, he'll find forever friends that he adores and adore him AND understand this mother's heart.

Friday, June 17, 2016

In tragedy love and acceptance can be born. Lesson learned.

I don't think there is anyone in the USA that has not heard about the terrible tragedy that occurred in Orlando this past week.  No doubt everyone's heart was touched and saddened.  The tragedy transcends beyond politics, beyond religions, beyond differences that divide us [or at least it should and did often!]
I was touched and am touched by the outpouring of love and service to the families and loved ones left behind from those who have similarities, from those that have differences, from the most unlikely places.  I have LOVED reading those stories. 

We've tried to instill in our sons that we love all, we accept all, we do not judge.  This tragedy has been a door to educate and show them even further, how we are called and meant to love.  As human beings, all connected, it is important, MANDATORY that we love.  We should love!
Children have real feelings, they have questions, they want to know why.  I don't hid much from my sons.  When they ask, I try to be as honest as I can on a level they understand.

Why would someone shoot all these people?  What does gay mean?  Why did he hate them?

The one thing I wanted to impress on them that the shooter, consumed with hate because of differences, felt it was his job to judge those people and take their lives. 
Beyond that that I moved to the victims.  Though the shooter played a terrible roll, the tragedy is no longer about him, he's gone now. 
Rather it was focusing on the victims.  On helping and loving the families and loved ones left behind. 
I explained [as I have before] what gay means.  It means that one adult loves another adult of the same sex.  And they shouldn't be judged, hated, killed, or looked down on because of it.
And I shared with them stories of those reaching out in thoughts, prayers, and love to help.
I told them that adults are free to love other adults and be supported.  And I will always love and support them no matter who they love.

This is my chance, my children's chance, every person's chance to cast aside judgement, cast aside prejudices if they have them, to open their arms, services if they have it, to open their hearts and love and accept people as fellow human beings. 

Living in the state where it happened, just an hour away, you can see and feel the mood, see how love has won out, even from those who don't agree.  You see people putting aside their political and religious differences to donate blood, food, places to stay, airline rides.
I'm a member of the Episcopal Church.  One Episcopal church in Orlando opened it's doors and offered funeral services for the those who lost their lives.  LOVE and ACCEPTANCE! 

This is what my sons are and will learn.  To love and accept others, and that they are loved and accepted.  Anything less is unthinkable.
Orlando Strong!
Pray for Orlando!

Faith, Hope, and Love.  But the greatest of these is LOVE!

Sunday, June 5, 2016

Terrariums, Nature, clay, & Chemo. Oh my!

June has arrived with a hot roar.  Florida temperatures are soaring into the 90s and the end of the school year is here!
It has been quite the journey this school year and the adventure continues.

Aaron is doing fabulous at Babson Park Elementary.  This coming week is their final 3.5 days and it's packed with fun for the students, from a School Fair to a Fairy Tale Bowl.  He's also scheduled to attend 4 weeks [4 days a week], a 3rd grade enrichment program at the school.  It's a half day program and will begin introducing him to the third grade. 

David has pretty much wrapped up his first official homeschool term.  He began at the end of April.  The 2016-17 academic year will be his first full year homeschool.
He's excited about the coming year as his textbooks have begun arriving.  He was especially excited when his National Geographic Earth Science book arrived! 

The biggest reason, as you all know, to homeschool is due to his health.  His ITP has been relentless and thus far has responded very little to the 3 different treatment plans he's undergone.
So now we dive into the more heavy duty treatment and pray for at least short term remission.  |

Monday, June 6th he will begin a 4 week round of a chemotherapy drug called Rituximab.  It brings response and often short term remission [about a year], in about 50% of it's recipients. 

His platelet count again hit critical level this past week and we found ourselves back at Nemours for an overnight stay and observation.  They debated whether to do a short term treatment, but his platelets at least held steady and we were scheduled for Monday for the chemo.
The wonderful thing is that Nemours is an amazing hospital for children.  I don't know how we would have done it without them.  They have made this whole journey "fun" for David making sure he understood what is going on and entertaining him while he is there.

This link tells a little more about the treatment he will be recieving.  While it is of course good in one aspect, it will be trying in another.  His immune system will be more suppressed than usual.  And as we know, he's already not the best at fighting off infection.
So per the doctor's orders, we have taken steps to make sure he is rarely around large crowds, and those that enter our home sanitize their hands upon entering.  It will take 2-6 months for his body to begin replacing the B & T cells that are destroyed during the chemo.  And about 11 months for it to be back to "normal".

Rituximab, a chemotherapy drug.

Click the link to read more about Rituximab.

To our family's great surprise and thankfulness, a friend of ours  [Jim Holton] created a Go Fund Me page.  We have been extremely blessed and the sweet gifts and donations will help ease the burden during this trying time.  For each of the infusions, David and I will be staying in a hotel close to the hospital just in case we need to go back [we are over an hour away if we go home] and most of the serious side effects happen within the first 24 hours. 
It will also be good for David as we can go just minutes down the road and he can rest right away. 

Help the Gouge Family fight ITP

Click the link above to read more about the campaign for David!

So back to the end of David's school year!  We had a great week of exploring nature [Thank you Bok Tower Gardens!], to eating 2 terrariums where we can watch a small eco system develop, to creating with salt dough! 

Another thing David has really been into is "old timey phones".  He constructed this old box phone [fashioned after the crank phones], and also made a candle stick phone.  He plays with them all the time!
I found a vintage replica [non working] candlestick phone on Amazon and would love to get it for him for his birthday if we can. 

And lastly, to keep the boys spry this summer, I have created our schedule.  Now I realize with David's June chemo schedule it may be thrown off a bit, but it's a good guideline and will encourage them to remain active both mentality and physically [for David as much as he can be currently.]
Here's to summer!  Here's to remission!  We can do this!

Monday, May 23, 2016

My other son: Have I told you how wonderful he is?

I'm talking about my youngest, Aaron Preston.  He'll be 8 in a little over a month and he is so excited.

He talks everyday about his birthday, about how he wants a Lorax theme, about the legos he wants, the friends he wants to invite.
He's my happy go lucky kid.  My boy with a sense of humor.  He's the one that will go outside early in the morning and come dragging in at dusk, covered with dirt, telling about his fun day out playing.

He's my sensitive soul, my very giving child, perceptive, loving, feisty, spirited, and full of hugs.

He's always slipping me cards and notes, little gifts he makes out of random beads he finds.  He's almost always so understanding of David and my often preoccupation with him and all the issues.

With that, I confess that I'm pretty sure I've failed him as a parent. 
I feel like I don't spend as much time with him as I should.  I feel like at times I'm harder on him.  I tend to not realize what he may be feeling or going through in his own life, and with dealing with David's illness and Autism.

Not too long ago we were at Aaron's school having lunch with him.  It was a nice spring day, we were sitting on an outside table, when suddenly David let's out that all to familiar scream of fear and phobia.  He has always had one concerning bees and wasps.  And it seems to only be getting worse.  He also loses all sense around him and about him.  David flies out of the seat and across the small court yard screaming and crying. 
Other children are lining up for lunch and looking at him peculiarly.
I try to coax him back to his seat.  Aaron stands up and says "Look David, it's gone and has flown by the building.  Come sit down."

I could see Aaron glancing over at the other children a little nervously but he went on eating.  I had never thought about Aaron's reaction and also what he might be met with from other children when they encounter his brother with Autism.  Not until my husband told me later that night, it might be a little tough on him having to explain why his brother does what he does. 
I also found myself short tempered tonight with both them.  David of course, because of the ASD can often provoke people to irritation not realizing it.  Tensions mounted, Aaron hit him.  I lost my own temper.  Tears came.  The cool down came.
And then he and I sat and talked.  I apologized and told him my reaction wasn't right.  I also told him how I know it is so tough sometimes David struggles because of the Autism. 
Aaron was very sympathetic.  I told him though that when he feels overwhelmed trying to deal with David to come and talk to mom and take a break.

I know I need to make a much more conscious effort to be more understanding with Aaron [and I will!]  I also need to make more specific times now to spend with only Aaron.  Especially since David is now homeschooling and is with me all day.

I often wish a manual would have come with my children.  No guessing, no screwing up, no wondering how bad I might be scarring them, no hoping and praying that they will not hate me one day.

The one thing I try to take comfort in, is that my children picked my husband and I for a reason, to be their parents.  I want to honor that and be who they need me to be!

Here's to my other son Aaron Preston!  I will always love you, beyond the universe and back!

Monday, May 9, 2016

I am sorry for not being what you wanted.

Yes, you've read that right. 
I'm sorry.  I am giving you my apologies.  Even though it troubles me and leaves an impression on my heart, I still give them to you.
Who?  Who is 'you'? 
'You' are those people who, over the months and years have decided to distance themselves from me.  To no longer talk with me.  To be content to just hear or read [you have to love the age of social media], what's going on in my life, yet stay at arms length.
Yes, I've noticed.  I've noticed it as I've grown in my own life, in my own views, in my faith in the Christ I follow. 
Though there is a spiritual aspect to this, at the same time it is so much more.  It is the conflict of being who I am, even if it means losing friendships over it.

I used to be someone else.  Someone who thought differently, who perhaps acted different.  Who was certain the world was black and white and everything had an answer. 
There are times I wish I could go back to that, only because of assurance I had in myself that I was doing everything "right" and I had reason to justify it.

You liked me then.  You thought I was "saved".  You thought my heart was in the right place.  I am sorry that now you don't think those things.
Yes, I have noticed. 
I've 'heard'.  I've seen the looks, felt the divide widening.  Even in this age of social media, a deafening silence speaks volumes.  Please, don't think that I have not noticed.  While I may be many things, I like to think that I'm fairly smart.

Truly, I am sorry.
I am sorry that I'm not that role model you thought I was or once was. 
I am sorry that I can't honor your God the way you believe to be right.
I am sorry that you think I've strayed.
I am sorry you think I no longer have a spot in Heaven. 
I am sorry I've disappointed you. 
I am sorry I can not be who you need or want me to be.
I am sorry that I can't be who you 'believe' God needs or wants me to be.
I AM sorry.

I get it.  I do.  You are moving and acting based on your convictions.  For that I can not fault you.  I do the same thing.
I will however, never judge your heart, your salvation, or your place with God in heaven.   As a matter of fact, if you've distanced yourself from me because OF my faith, I still will never judge you on that.
That's the difference you see.

While I am sorry I am not who you thought or want me to be. 
I am NOT sorry for being me.  For being who, based on my convictions of the God I follow, wants me to be.

I am not sorry for growing as a person. 
I am not sorry that through the pain of life and loss, I learned that some things have no answers.
I am not sorry that through my becoming a parent, I saw the world was not black and white, but that my unconditional love for my earthly children is probably only a glimmer of the unconditional love that the Creator has for ALL of us.
I am not sorry that through loving my children and through friendships that I came to realize sometimes a family doesn't have to be or look like what ancient writings from humans said it should.
I am not sorry that despite who you love and marry, God STILL loves you and you are and will be a part of greater love after this life passes.
I am not sorry that I believe the Loving Father I read about in the scriptures I follow [even if I think they can be fallible, not the message but word for word] would not punish his children, his creation by a separation from Him FOREVER.  I could never do that to my own children.  From that, I have been taught a lesson over and over again, that His love is even greater then.
I am not sorry that I don't think the personal faith I follow is the only "truth".  Again, I am so under qualified to ever dole out that judgement.
I am not sorry that I chose to stand up for those who are often made fun of, mocked, cast aside, told they are going to hell.  I am not sorry for loving the 'least of these'. 
I am not sorry because I AM the least of these.
I often stink as a human being.  I am often ugly and hateful.
I am often unaware, apathetic, and harsh. 
I am always human!

Like the rock formation in the picture above, I feel worn down.
I feel like I don't really belong anywhere because of how I feel, what I believe, and who/what I stand up for.
I feel like that rock formation, both a deeper formation and a projection of that formation.
I am out of place because I am one thing [a believer in Christ], yet another [accepting of all]. 

Friends honestly are few and far between for me.  Often my thoughts are misunderstood or I have no words to truly convey what it is I think, or feel, or believe.

I am sorry.  I do wish you could still talk with me.  I wish you could still look up to me.  But I understand.
  I know you have your convictions and are firm in them.
While now in this season we may not be friends, I know in the grand scheme of this temporal life and the bigger picture in this infinite universe our paths will cross again, and in love.
So while I can not be what you want or need, do know that I still love you.  I still think you are a part of this greater plan, even if you do not think I am.
I wish you well, for that I won't apologize either ;)

Nor will I apologize for being me.  I am loved just the way I am.