Help Lexi Overcome the Dark Shadow of OCD

Suicide is the second leading cause of death for young people ages 10-24.

LGBT youth are more than four times more likely to attempt suicide than their peers.

My name is Gina and I am the mother of three amazing children. Two of my children have suffered from a severe mental illness which has led to thoughts of suicide. 

We do not want our child to be just another statistic.

We thought we knew what mental illness was but we really had no idea until OCD invaded our lives. 

OCD, Obsessive Compulsive Disorder, can range from mild to severe. Moderate to severe OCD is severely disabling as the obsessive thoughts and compulsive actions consume endless hours, robbing the person of living day to day life.

My older daughter has overcome severe obsessive compulsive disorder yet as a family we struggled for years to get her the help she needed. It robbed her of the innocence of  childhood.  My older daughter is 21 now and is employed and living on her own. Yet, she has large gaps in her memory of her childhood during the time that she most suffered. For my younger daughter, severe OCD is still a real issue. 

Our bouncing bundle of joy arrived in our lives, January 8,2009 and she completed our family of 5.  She began walking before 10 months, likely to keep up with her older siblings who are 7 and 11 years older than she is. At the age of 4 she taught herself to play chess with an Usborne Chess picture book.  She was riding a bike at 5 and also quickly earning belts in Tae Kwon Do.  

Creative, imaginative and full of energy she has developed a love of digital art, photography, bird watching and is gifted with a multitude of computer skills. 

Despite all her talents, she was silently suffering inside.  She had told us at age 2 that she was a girl despite the label on her birth certificate. It took us years to catch up with her and for all of us to come to acceptance of her true gender identity.

She  experienced unusual stress as a toddler including her older  sister’s sudden onset of OCD. And the stress of being without her primary caregiver (me) when her father suffered a nearly fatal heart attack. 

From a young age, she would obsess about the placement of her large stuffed animal collection with the need to repeatedly count them.   She also had a need to have things just right as well as several irrational fears. In some ways her issues looked  similar to her older sister and yet different. Someone with OCD realizes that these obsessive thoughts and compulsions do not make sense and yet they feel powerless to change because of the insurmountable fear that something bad will happen.

She has since been diagnosed with OCD, general anxiety, social anxiety, depression and gender dysphoria. Yet, she is so much more than those labels.

The standard of treatment for OCD includes Exposure Response Prevention (ERP) therapy and/ or medication.  Our older daughter was able to overcome her OCD with a qualified therapist and medication.

You would think that two parents who have gone through the challenges of OCD, would know what best to do when a second child showed signs of OCD.

We thought we knew. We found a therapist and a psychiatrist and went to a developmental pediatrician and Occupational Therapy. We sought to utilize natural and alternative practices before resorting to psychotropic medication for our kids.  We took out any possible offending foods like gluten and dairy as well as artificial food additives.  We added supplements like fish oil, vitamin D, inositol, magnesium, digestive enzymes, amino acids and probiotics. All of those things have been helpful but they have not been enough.

She does have a therapist who specializes in gender dysphoria yet we have known she needs additional therapy to specifically address the OCD. 

In 2021, we found NBI in Weston, Florida and they have a treatment program specializing in complex cases of anxiety and OCD. We met online with  a therapist from NBI.  We paid the out of pocket fee for an initial consultation, $400.  Yet, we were unable to come up with the necessary funds to attend this program.  After continuing to search for something more local since that time, we believe that  NBI may be the only solution for our daughter despite the distance and cost.  We need both the funds to have a place to stay during her treatment which could be up to 3 months and the cost of the program which is estimated to be $12,000 per month.  

We have tried some online therapists since 2021 and yet it was not enough to address the severity of her OCD. Even with a qualified therapist, it is a time commitment for us as well to follow through with the ERP therapy.  All of these efforts have been at a great cost to our time and income. 

In the fall of 2022, her symptoms got worse.  The psychiatrist changed her medication to see if  a different SSRI medication would be more effective.  Despite initial improvement with the new medication, things quickly got worse with  increased agitation, outbursts of rage and anger that led us to the hospital ER multiple times and even to being admitted to the behavioral health unit. Yet, even in the hospital, there is no regular individualized  therapy and there is not a qualified OCD therapist.  

 It has been heart wrenching and emotionally exhausting to hear our child say that she feels her life is useless and wants to die. .  We called 911 because we feared for her safety and we watched her be handcuffed by police.  Despite how we have experienced these events, we know it has been that much worse for our daughter. 

We have exhausted all efforts to find treatment in NC as well as treatment covered by our insurance.  It is time for us to move forward to get her the intensive treatment that she needs. 

We need financial assistance for her to attend the intensive OCD program at NBI. 

We are even considering selling our house to be able to pay for her treatment. 

Our daughter is 14 years old and we want so much more for her life than the suffering she has been experiencing for most of her life.  We see her shine when she is online with friends, taking pictures of birds or explaining a complex concept to us.  She deserves to have more positive moments in her life and the ability to overcome her challenges. 

If you have the means to help us and also the ability to share our story, we ask for your help.

I find inspiration in music and every time I hear this song, I sing it to my daughters. 

I wish someone would have told me that this life is ours to choose
No one’s handing you the keys or a book with all the rules
The little that I know I’ll tell to you
When they dress you up in lies and you’re left naked with the truth

You throw your head back, and you spit in the wind
Let the walls crack, ’cause it lets the light in
Let ’em drag you through hell
They can’t tell you to change who you are
That’s all I know so far
And when the storm’s out, you run in the rain
Put your sword down, dive right into the pain
Stay unfiltered and loud, you’ll be proud of that skin full of scars
That’s all I know so far
That’s all I know so far

So you might give yourself away, yeah
And pay full price for each mistake
But when the candy-coating hides the razor blade
You can cut yourself loose and use that rage

I wish someone would have told me that this darkness comes and goes
People will pretend but baby girl, nobody knows
And even I can’t teach you how to fly
But I can show you how to live like your life is on the line

All I know so far, Pink

Childhood Mental Illness: Things I wish I had said

Things I wish I had said and things that need to be said

What would you do if this was your child?

No, OCD is not keeping things in order.

Do you have clinically diagnosed OCD?

Does your need to have things in order take hours of your time during the day?

Does it interfere with your daily life functioning, because if not, do not tell my child that you have OCD and that it is normal.

Obsessive Compulsive Disorder is a DISORDER

Obsessive Compulsive Disorder is a mental illness where they brain is not functioning properly

Obsessive Compulsive Disorder is an illness and not an adjective

Obsessive Compulsive Disorder is as real as juvenile diabetes and cancer and can be deadly

Suicide is the second leading cause of death in children ages 10-14

De-Escalation techniques. are essential in a crisis situation where someone is angry and violent

Observing officer, did you see the difference in my child’s behavior with the officers who used those techniques a week and a half ago compared to. the officers standing before you and are not following that protocol but instead are in dad mode.

Why are you using the safe room as a holding cell for my child?

Why the hell does your “safe room” have concrete walls???

Why is our system so broken that my child has been. back to the emergency room more than 5 times in the past 3 months.

Why won’t anyone help my child?

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a clinical diagnosis given to children who have a dramatic – sometimes overnight – onset of neuropsychiatric symptoms including obsessions/compulsions or food restriction.

I copied that statement from Stanford website.

Why does my child’s psychiatrist not recognize PANS?

Why won’t anyone listen to us?

Why are my child’s doctors ignoring these signs and symptoms?

Why am I the only one who sees my child calling out for help?

Why was the police officer so confrontational with my child yesterday and why did he tell her that she is 14 and therefore needs to know better?

Why do people expect kids and especially teenagers to act like adults but do not treat then like adults?

Why do people not realize that the human brain and its development of higher level cognition does not fully develop until the late 20s.

Why can’t people understand that a 14 year old brain does not function like a 25 year old brain?

Why do people not recognize that my child has post traumatic stress disorder?

Why do the professionals not see that if my child has PTSD that she is triggered by different situations and you can not talk her out of it?

Does the medical community see PTSD as a behavior disorder?

Why is the psychiatric unit of the hospital called behavioral health?

Why are you telling my child that her behavior is her fault and that she can control it if she just chooses differently?

Why do we treat children differently if they have a psychiatric diagnoses vs a “medical diagnosis”?

Why are psychiatric illness not considered medical illnesses?

Who decided that the brain function is seperate from the body?

Who decided that because an illness manifests with behavior changes then it needs to be treated differently?

Why do the people who are put in the position to help children with mental illness have little education in mental illness, in psychiatric disorders and how the brain functions?

Why is getting the specialized treatment that my child needs cost prohibitive?

Why am I not able to search for the Charlotte PANDAS/ PANS treatment center?

Why is there not funding to assist people who can not afford the high cost of specialized centers?

Why is healthcare in the United States tied to having the financial means to get the help that is needed?

Why are some diagnoses treated without regard to what people can pay and others are not?

Why is your child with cancer more important than my child with severe Obsessive Compulsive Disorder?

Why do the professionals not recognize that they are failing to treat people and diagnosis people correctly?

Why should my child suffer because I do not have the financial means to take them to a specialized clinic?

Why won’t anyone help us?

Why won’t anyone help my child?

2021: January 18

On this day of your life, Gina, I believe God wants you to know … … that there is a Chinese proverb: Great doubts deep wisdom. Small doubts little wisdom. Never stop doubting, never stop questioning, never, ever assume you have all the answers. Having all the answers kills the question itself; renders it lifeless –and you, too… Keep looking, keep seeking. Never, ever find it all. Because when you find it all, you deny that there is more. And there is never not more.

Neale Donald Walsch

“Seams like I should be getting somewhere, Somehow I’m neither here nor there. Can you help me remember how to smile? Make is somehow seam worthwhile. How on earth did I get so jaded?”

Soul Asylum, Runaway Train

Listening to my Writing Inspiration playlist, Pushing myself to return

To return to where I belong…

Sitting at a keyboard and going within

Tom Petty knows just when to show up

Learning to Fly…

I turned 50 October 15, 2019 and it was a grand celebration at the beach with my family with a pre solo- celebration in September with my first ever, solo beach trip…and not my last.

Somehow, it is 15 months later and shit happened

Weight gain

Global pandemic

lack of writing

Obsessive Compulsive Disorder flare up in my child

work changes

Less hours, then more, then less… then more…

Stuck treating patients in their rooms, unable to use the large, wonderful therapy gym

Unemployment checks… that was nice

Who knew the underemployed could collect?

A Pandemic changes everything

Everything is always changing

But pandemic changes suck!

I don’t need more quality time with my family!

I am not living in this pseudo reality of “wow, how wonderful to have this “Excuse” to spend more time with my family and focus on what matters!!!! #$%&

I have made choices to allow me to have more time with family

Financial choices, work choices, living in a small house and driving aging cars…

My husband and I have made choices for 23 years to have quality time with our kids and to be there for them

We made those choices years ago

We didn’t need some God-forsaken pandemic to remind us what is important!

Maybe the pandemic helped you to refocus, I respect your path

But for me, it has sucked!

My youngest child has social anxiety and being around others is more challenging than academics.

Maybe today, after all these months, I can see that they have had more time online to grow friendships and have made strides in understanding friendships and this might help them in the near future to connect in person with others. I can hope…

I found myself loosing the desire to go anywhere

Content to stay in my bubble of work and home

In the beginning, I remember being excited to go to the grocery store, I choose to go rather than my husband, so glad to get out!

But that was months ago…

I have let him do nearly all the shopping.

I work my part time irregular hours at the nursing home.

And I stay home, going on necessary zoom or video calls mostly for doctor visits, for me and my kids.

Here is is, almost one year past the initial pandemic lock-down

The self-absorbed haters tried to take over the Capitol

We worry about the future, not only for ourselves, but for our kids

The optimist in me, knows somehow this too shall bring great change

All of it, the political strife, social unrest, injustice and this crazy virus and how the world has responded

Yet, I just want to scream ouch fort to the world…..

What the F#$%!

I had way too much shit on my plate before March 2020. before November 2016….

Life has to get better, somehow…

All I know to do is to write

Writing to find my inner peace and my own truth

I leave you with these words…

When the day is long
And the night, the night is yours alone
When you’re sure you’ve had enough
Of this life, well hang on

Don’t let yourself go
‘Cause everybody cries
And everybody hurts sometimes

Sometimes everything is wrong
Now it’s time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you’ve had too much
Of this life, well hang on

‘Cause everybody hurts
Take comfort in your friends
Everybody hurts
Don’t throw your hand, oh no

Don’t throw your hand
If you feel like you’re alone
No, no, no, you are not alone

If you’re on your own in this life
The days and nights are long
When you think you’ve had too much of this life to hang on

Well, everybody hurts sometimes
Everybody cries
And everybody hurts sometimes
And everybody hurts sometimes

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts

No, no, no, no you are not alone

I am grateful, November 19, 2019

I am grateful…

I am grateful for:

Cherries, bananas, kale and hard seltzer and my Ninja

Gluten free zucchini bread muffins in my kitchen

Time alone when I wake up, with the lights on

Spotify premium

Friends

Venting to my brother

Earbuds so I can play music loud while at home with my family

Don being able to do a few things without getting so winded

Mint Hill Aldi and CVS…only 3.5 miles away

My health

My amazing husband, recovering and being present for our children

Patience to help children with anxiety and depression

Patience while my husband recovers from open heart surgery

Finding a way to work and meet kids needs while Don can not drive for 4 weeks

Grace Slick and Mickey Thomas

Job with flexible hours

Being an Occupational Therapist

Dance With Me, by Phillip Phillips

Centering myself, finding a way to take care of me

Grounding and accepting what is

Connecting and being present for my children

Consciously choosing my thoughts, words and actions

Respecting differences

Challenges to Change: we can miss the writing on the wall

Inspiration happens in many ways.

I often listen to music as I write and when a song captures my attention, it sparks something within me, and I begin writing, finding my own meaning in the words.

Growin’ up you don’t see the writing on the wall
Passin’ by, movin’ straight ahead you knew it all
But maybe sometime if you feel the pain,
You’ll find you’re all alone everything has changed

In my journey of self discovery, I have been reconnecting with old friends.

This time, I met up with someone I had known for years from when I began homeschooling. We first met about 14 years ago. We saw each other when our kids had shared interests and therefore we found ourselves at the same events. This is typically how I have met people and have made friends over the years of homeschooling my kids. We knew each other and became Facebook friends yet never spent time together as friends. Life circumstances connected us more, yet our connection remained virtual.

You know how you meet someone and feel an instant connection?

I knew I liked her from the time I first met her, yet our paths never led us to getting together with our kids.

We got together and what I intended to be a casual meet up turned into a 4 hour conversation with us discovering we had so much in common, our lives had taken similar paths and we found ourselves sharing things we had never shared with anyone before.

We both talked about becoming a mom and how it changed us.

I always wanted to be a mom.

I remember looking forward to the day when I would have my own daughter, and imagined what she would be like.

I remember going to college with a new passion for this field of study I had chosen, yet I always envisioned that I would work for a few years until I had children.

I found myself enjoying being an Occupational Therapist and happy with the field I had choose. When my husband decided he wanted to go into business for himself as he was tired of the corporate world, we talked about having children, and I recall telling my co-workers, it doesn’t matter who stays home with the child. Dad staying home with the child is just as good as mom.My co-workers with children disagreed.

After 3 1/2 years of marriage and a year of my husband left his job to grow his own business, our first child was born.

I didn’t have that instant connection with my child the way I have heard people describe. I loved him from the start and was so excited to be a mom, yet it took me time to develop the sense of a strong connection.

At the end of my twelve week maternity leave I found myself saying,

What have I done? I don’t want to leave my baby and go back to work!

Life changes us

We talked about how if someone had told us years ago that this is what our life would be like now, we would never have believed them.

Play the game you know you can’t quit until it’s won
Soldier of only you can do what must be done
You know, in some ways you’re a lot like me
You’re just a prisoner, and you’re tryin’ to break free

I can see a new horizon underneath the blazing sky
I’ll be where the eagle’s flying higher and higher 
Gonna be your man in motion
All I need is a pair of wheels
Take me where the future’s lying St. Elmo’s fire 

Burning up don’t know just how far that I can go 
Soon be home only just a few miles down the road
And I can make it, I know I can
You broke the boy in me, but you won’t break the man

I also enjoy discovering why a song was written and the author’s meaning.

In a search for the meaning for this song, I found this information on song facts

David Foster and John Parr wrote this song specifically for the movie St. Elmo’s Fire, but the song itself is about a Canadian athlete named Rick Hansen, who was paralyzed from the waist down after a car crash when he was 15. On March 21, 1985 Hansen began his “Man In Motion” tour, traveling about 70 miles a day to raise money for spinal cord research. At first, Hansen had trouble getting media attention and donations, but when this song was released with the movie in June, it became his anthem, and as the song rose up the charts, interest in Hansen’s journey grew. By the time the “Man In Motion” tour was completed on May 22, 1987, Hansen had put over 40,000 Kilometers (24,856 miles) on his wheelchair in 34 countries on four continents, raising $26 million. He became a national hero in Canada, where he is closely associated with this song.

How ironic

My children’s anxiety disorders and my own undiagnosed Bipolar Depression, paralyzed our family.

Now, my husband and I have created a business to help other people struggling in the ways that we did.

I am passionate about educating people on mental illness and in particular Obsessive Compulsive Disorder.

I have really enjoyed digging into this song because I found so much behind it.

St. Elmo’s Fire describes a weather phenomenon involving a gap in electrical change.

It is a phenomena that looks like dangerous fire, and is an electric charge, but in reality, it does not give you an electric shock the way lightening can.

Obsessive Compulsive Disorder, OCD, is a condition in which the brain tells a person that they are in eminent danger, when in reality they are not.

My life has had many challenges and twists and turns.

The unexpected challenges and changes in my life have led me to where I am now.

I now feel like I am being the person I was always meant to be.

And I am so excited to move forward in my journey…

I can see a new horizon underneath the blazing sky
I’ll be where the eagle’s flying higher and higher
Gonna be your man in motion
All I need is a pair of wheels
Take me where the future’s lying St. Elmo’s fire

I can climb the highest mountain, cross the widest sea
I can feel St. Elmo’s fire burning in me, burning in me
Just once in his life a man has his time
And my time is now I’m comin’ alive

Nothing at All

I have the thought to get outside and exercise.

I have the thought to work on that crochet project I started months ago, or maybe years.

I have the thought to spend time with my husband.

I have the thought to work on a project with my 10 year old, something we had talked about, for a while.

I have the thought to eat healthier, reduce my sugar intake, drink more water…

Intention

Yes, there are times when I intend or even plan to work on one of these things.

And sometimes even the desire to be more engaged in my life.

Energy

Convincing myself to get out of bed in the morning

….to get to work

…to get to an appointment

Getting up from bed

Moving forward from distractions, Stuck playing a game on my phone,

So that I can:

Get in the shower

Drive to work

Begin my work day

Convince the patient why he needs to participate in therapy

Manage my time

Get all the patients seen

Finish the required paperwork

Focus and manage my time

Convince myself to see the “difficult patient”

Who is…

Very overweight

Requires 2 people to get out of bed

Doesn’t like therapy

Doesn’t care about getting better

Is too confused to care and locked in anger

Talks so much that I have to find a way to move forward with their actual participation in therapy

Repeats everything that has gone wrong, over and over

Figuring out how to listen to them, acknowledge their feelings, and help them move on… Long enough to participate for 45 minutes, or 65 or 72 minutes

Focus and finish my paperwork for the day in a timely fashion, whatever that is

Get the computer to connect to the internet

Find a computer

Find the therapist assistant who has been seeing the patient so I can write a progress note, a recertification, or discharge paperwork

Figure out what the patient’s discharge plan is so that I can include that in the paperwork

Gather my things, walk to my car and

Drive home

Gather my lunch bag, purse, phone to go into the house

Arrive home to a child wanting to tell you everything that happened or share their problems from the day, repeating them, repeating with more emotion, fighting with their sibling

Listening to my spouse…..

• Fill me in on the days happenings
• Talk about what needs to be done
• Ask me to put my things away
• Tell me what I need to do tomorrow
• Ask for help with making dinner
• Say his goodbyes as he heads out for an appointment

Gathering the energy to…

Get up from the couch in order to….

• Feed the dogs
• Walk the dogs
• Prepare dinner
• Get up from the couch after resting
• Find food for dinner
• Make dinner
• Clean off the counter
• Clear out the ants scattered around the counter full of crumbs & dishes from the day
• Talk to my child about eating, helping

Anticipating my spouse coming home

• Worried about the mess in the kitchen
• What I fed the children for dinner
• The lack of vegetables at dinner
• Seeing the look on his face when he sees me sitting on the couch
• Knowing I should have gotten more done
• Wondering why I didn’t get more done
• Beating myself up for not….

Getting myself ready for bed

Remembering to take my medication, my supplements that are supposed to help me

….deal with day to day life

Helping my children…

• Find a snack to eat
• Be motivated to get ready for bed
• Cope with their anxiety at bedtime
• Brushing their teeth
• Redirecting them from obsessive and intrusive thoughts
• Provide a calming environment for them to go to bed
• Apologize for loosing my cool
• Apologize for not listening or playing the game together, like we talked about
• Apologize for not helping them start their bedtime routine sooner…

Reviewing my day in my head and wondering why I did not get more done, be more productive at work, finish sooner at work, spend time with my children

Hearing my alarm go off and wishing I did not have to go to work.

Do you or your loved ones struggle with depression, anxiety, or bipolar depression?

I know sharing my story has helped me. We need to look at our stress before we can move on from it.

I used to think my struggles weren’t serious depression because after all, I managed to get basic things done. It took me a while to seek help for myself….and for my children.

When we are struggling to get through each day, it multiples the challenge of helping our children with their emotional stress, mental illness, behavioral issues.

My psychiatrist recently referred to my bipolar 2 as mild.

It doesn’t feel mild to me.

For many people, they go through their day like these tasks are nothing at all.

Healing through writing

Today is March 25, 2013

I had knee pain come out of no where yesterday and was so glad I had an appointment at my chiropractor this morning.  Apparently it was more misalignment in my back and hips causing knee pain.  I assumed it was residual damage from the car accident that I was in 10 months ago.  When my knee bothers me which it does from time to time, I get angry.  Before my car accident, I had no knee pain issues.  And when I am in pain or stressed, then I become more anxious driving.

Even ten months later, I have an over active startle reflex when driving.  It is far better than it was the days and week and even months right after the accident but it is not gone.  We can recover from trauma yet we don’t ever return to the place we were before the trauma.  Right after the accident and for many weeks, I could not get the memory of the accident out of my mind the entire time I was driving.  I hated that.  I hated the fact that what sometimes is my time alone, time in the car driving, was now ridden with fear and the memory of a traumatic experience.   I think what made it even more difficult for me was because I was driving along minding my own business traveling the speed limit and this car turned into me in broad daylight on a road with good visibility.  The result has been me not trusting any other driver on the road because you just never know when they are going to make a bad judgement decision.

This is no way to live.

Today as I was driving to  my chiropractor experiencing this  constant ache in my knee, I had a few close calls on the road.  Nothing extreme just a few cars coming toward me and crossing the yellow line for a few seconds, enough to set me on high alert.  Later, after I dropped my son off, I was pulling into a two lane road where the speed limit is 35 and was about to move into the left turn lane when a car speed along out of no where- the closest call all day.  So I thought to myself,  Why am I having these near miss experiences in the car on a day that I have knee pain?

Surely, it must just mean that I need to write about my accident.  The universe has been pushing me to write more and to carve out time in my life regularly to do so.  The signs have been so clear to me and yet finding or making the time to do so has been a challenge.  This past Friday, I did it.  After getting my younger kids breakfast, they wanted to watch a show and so I decided I would go up to my bedroom with my lap top and write.  I would not check Facebook or my email but go directly to wordpress and write.  A few weeks before I had decided that i needed a more specific blog and had created a Child-led learning blog.  I hadn’t done anything else since creating it.  So for almost an hour, I wrote. I did not finish the blog, but was so happy that I had carved out the time and done it! Finally!  My goal is to do that every day or at least several days each week.  As I write that, something deep within me says, “everyday,Gina, make time to write every day”.

It is Monday and on Mondays, I usually have a few hours to myself while my oldest is at the homeschool co-op.  I either go to a coffee house or the library both around the corner from where the co-op meets.  Usually, I decompress by checking Facebook and email and then look at my homeschooling website and approve and welcome new members and then work on an update message to send to members.   I think about writing a blog but it has been a long time since I have done so.

I knew I needed to go straight to WordPress today and not look anywhere else and write.  I wasn’t sure exactly what I would say or what the focus would be.  I then pulled up my drafts because I recalled writing about my accident in the past.  I found the following written just 6 weeks after my accident:

I was in a car accident on May 26, 2012.

I was driving home from work. It was a Saturday and I was done early and so I decided to head to Target to use the gift card that I had gotten back in October  to buy a new swim suit and planned to take my kids to the pool too.

I never made it to Target and I did not take my kids to the pool nor was not able to for about 2 weeks.

I was driving along, not my usual route but on a road I had traveled many times before.

It all happened so fast and yet those seconds or more likely second, before the crash, happened in slow motion.  I clearly recall seeing the white SUV turning into me and deciding to swerve to the right to get out of the way.  I also vividly recall realizing that I could not get out of the way and knew she was going to hit me.  I remember it all like it took place over minutes instead of seconds.

But then all I remember is impact-

….and then the car coming to a stop and me opening my eyes.

After the initial impact, I do not know what happened.  I must have hit my head because I had a cut on my nose and my nose was bleeding and my air bag never went off.  But this I only know after the fact- when I got out of the car and someone said my nose was bleeding and when I later realized the air bag did not deploy.

I remember opening my eyes and seeing an air bag (passangers side) and some smoke and having the instinct to get out of the car.  I attempted to open my door but it did not move and so I climbed to the passangers side, taking my purse and water bag and exited my car.

I recall how shaky I felt as I stepped out onto the grass.  A wonderful bystander was walking toward me and asked me if I was alright and advised me to sit down.  I am so grateful to that wonderful woman who reached out to help me.  She did  not have to help me and I think she might be the witness who is listed on the accident report but I really have no idea.  She was there when I needed someone and I am forever grateful to this kind stranger for stopping and coming to my aid.

The person who hit me, apparently was a medic and she advised my bystander angel that I should lay down which I heard and then did.

I had no idea at the time that my car had spun around and the back end had struck a third car and then had been propelled forward coming to a rest along the grass on the side of the road.  Thinking about that, its almost like someone had guided my car to move forward and come to a rest where it did.  Maybe the car wasn’t on the grass, but I know when I stepped out of the car, I stepped onto the grass.

I drove back down the road where the accident took place today, it has taken me over 6 weeks to build up the courage to do this.

_______________________________________

I kept the above just as I wrote it 8 months ago.  The accident was still fresh in my mind and as I read it, I recalled the feelings I felt for so long every time I got in the car for several months after the accident.

I finally drove down the road where the accident was, pushing myself to do so 6 weeks after my accident but then I did not drive that way again for many months.   Luckily, it was not a usual route for me so it wasn’t like I was avoiding the road.  Yet, I knew I needed to drive on that road again to desensitize myself and reduce my anxiety.  Reminds me very much of ERP therapy that my daughter does for her OCD.   Recently, they began working on a bridge on my usual route to work and also where my chiropractor is located.  So now, I found that driving past my accident was the quickest option to get where I needed to go.  At first, I drove that way to work because I was driving the opposite direction from when I was in my accident.  It helped me to drive many times from the other direction and see where the accident took place.   I would go home a different route avoiding the road entirely.  Then, I decided I needed to drive down that road heading home but I choose to take the highway which the entrance to is within eyesight and just before where my accident took place.  The first time I did this, I got stopped at a red light waiting to turn onto the entrance ramp and as I sat there,  I had a clear view of where my accident took place.  I became anxious and felt my heart racing.  It was difficult to sit there for those seconds waiting for the light to turn green.  The next time that I came to the same intersection, I could look on the spot without all of the anxiety.    Over time, I even drove the actual path of my accident again.  The most difficult was when I was bringing my son’s friend home and it was dark and raining.  I became very anxious but survived the experiene.

When I think about my daughter and the level of anxiety she experiences with her OCD, I realize that it is likely far more intense than even what I experience.  The thought of having the amount of anxiety that I experienced when first trying to drive on the path of my accident  every day and many times in a day gives me a better understanding of what she experiences.  All I can say is,  “Wow, I can not imagine living with that much fear and anxiety   every day and frequently throughout each and every day.”

Healing from trauma is a funny thing.  There is physical healing and mental healing and yet they are very interwoven, much more so than most of us realize.  I know on days when I have physical pain, I have more anxiety driving.  I also know when I feel more emotional stress, I also have more anxiety driving.

I am teaching my 15 year old son to drive.  He has had his learner’s permit for several months and so I think about my driving all the time as a way of helping him to learn.  I try to take my 25 years of driving experience and use it to help him develop good skills and habits with driving.  Today as he was driving and we were talking about driving, he told me that he believes I drive different now as compared to before my accident.  He did not have his permit when I had my accident.  It was 3 months later that he took the required drivers ed class and another 3 months before he turned 15 and could take the test for his learner’s permit.  But he is very observant and I found it interesting that he saw a difference.

Traumas change us.  When my husband was healing after surving a massive heart attaack and long hospitalization, people  began to ask if things were “back  to normal”.  There is no going back.   I remember feeling,  Life will never be normal again.   I realize now that things can become “normal” again but it is a new normal.   The experience changes you forever and the change can be both positive and negative.  Hopefully we can heal enough through the experience to take more positive change with us and learn to release the negative or allow it to subside.

My husband calls his heat attack “getting hit by a two by four”, a sort of wake up call.

I have decided that it is much more challenging being the one smacked by the “two by four” than to be the caregiver.  At least, that has been my experience.  I could see far more positive change after my husband’s heart attack.  Yet, when I was the one in pain, it was difficult for me to step outside of my experience.  As I say that, it makes perfect sense.  At the time when my husband was recovering, it was frustrating to be in this place of new understanding and clarity and he seamed to be mostly angry, frustrated.  Maybe I was more in a spiritual place and he was more in his body.  Unlike my car accident, had no memory of his heart attack.  He had pain but had no idea it might be a heart attack and then he went into cardiac arrest and remembers nothing until after he woke up hours later after coming out of the cath lab.   I saw him in the ER before he went to the cath lab and he was “awake” and they told him he had a heart attack and he had this look on his face like “you have got to be kidding me” but he has no clear memory of this.   And so he awoke to discover what had happened and to be on a bed restricted to laying absolutely flat for a humber of hours and then it took time before he could sit up and over a week before he could stand and walk.

I knew the car was going to hit me before it did and I can feel the impact of metal on metal.  When I stop and think about it, I can feel it in my entire body.  I recall vividly the experience of my car coming to a stop and seeing smoke coming out of the dash and feeling that I needed to get out of the car.  I can relive the moments like it happened yesterday.  Yet, I know I was in a state of shock after the impact.  After all, it was dust coming up from the air bag on the passengers side that I saw and not really smoke, but at the time, my instincts told me, smoke means get out of the car and quickly.  I even wanted to move far enough away from the car after I got out of it.  I had no idea that my arm was injured from the glass and that my nose was bleeding and that my air bag had not gone off.  I remember some blood dripping but had no need to figure out where it was coming from.   Once I was out of the car, others began helping me and I am sure laying down helped me.  Then it was a long wait as the medics arrived and the police officer came over to talk to me, all with me lying flat on m back staring up at the sky.  I think about it and feel like I was fully aware of everything.  yet, I know there was a hazy fog of shock that likely lasted for days or weeks.

As I ramble on writing about this experience, I am thinking about all of the day to day traumas in our life, all of the little disappointments as well as the bigger challenges that affect our daily experiences and our life as a whole.  We respond differently depending on the situation.  The common thread is whether it has primarily a negative impact or a positive one.  How can a trauma have a positive impact?  Even I wonder that too as I write this.  I think it is what we take from the experience. The decisions we choose to make because of it, not our initial gut reaction but the way we handle ourselves despite it.  Most of the time it can be a big mix of both negative reacting and positive decisions.

Somemtimes, it just takes us longer to pull out of the trauma and to step outside of it and move forward.   Sometimes we have no choice but to keep moving forward.  Other times, we sit with the pain for a while.

When I think back on the days and weeks just after my accident, if I could go back in time, I would allow myself more time to heal.  I know I took my time to some extent and yet I take from the experience  a reminder to accept what is.  If I don’t feel well on any given day, I really try now to stop and think about what must get done and what can wait.  LIfe is no longer the rat race that I used to feel when I was younger.  Some days, it is good to stay in your pajamas and watch tv with your kids or make cookies and eat them for dinner.

Life really is too short to be in a hurry and rush though jumping from one thing to another without any time to breath.

Family Road Trip

We left Charlotte at 7am Friday morning.

Four people, suitcases, bags and bags of snacks: gluten free foods, fresh brewed tea sweetened with local honey

Missing a family member, oldest son, home to take care of dogs, attend work and school

Been a long time, four and a half years to be exact, since we traveled to St. Louis

I drove first

Road trip playlist on Spotify

Chai tea with coconut milk, caffeinated chai

When did i become a morning person?

When did I become a morning person who needs her caffeine in the morning to get her day going?

Writing

Time to myself

Music

Starting my day

Time with my husband and two younger kids

Seeing my husband with his family, in his element, relaxed, being the jokester among a family of self proclaimed comedians

Eye rolls from my sixteen year old daughter

“That’s how I know I am doing my job”

Nieces and nephews, who are my age, with children, teenagers of their own

I can’t stand to fly

I’m not that naive

I’m just out to find

The better part of me

Family

Nearly 24 years ago, I married my husband and became a Grothoff

I joined this family

Three new brother-in-laws and four sister-in-laws

Eleven nieces and nephews, from age 8 through age through age 23

Now,

Twenty-four years later… age 32 through age 47, with children of their own

Sixteen great nieces and nephews, if I counted correctly….

Playing with Andrew, age 18 months

Feels like a hundred years since I had a toddler of my own

My youngest is nine…

“9 going on 40” as his aunt said yesterday

Speaking up

Speaking up for my child

Speaking up for my child with social anxiety

Allowing

Allowing him to go off and be alone

Overwhelmed by all these people he does not know

He was four years old when he was last here in St. Louis

He was four years old when he met most of these relatives

That was half his life ago…

It was a house full

They were not all here, several live in Texas and some could not come

Nineteen people, not including us…

Only five other kids, two of them being teens

Family

Large families

I grew up with a large extended family

My mother being one of seven children and my father was one of six living siblings

We visited New Jersey at least once each year

So many aunts and uncles and cousins,

Great aunts and uncles… my parents cousins…

People

Many people

I was the quiet one

Close to mom as a young child

Or hanging with my sister as I got older

Loud family

Difficulty to get a word in edgewise with all the animated extroverts

Fun family

Memories

Creating memories for my own children

Establishing bonds

Building a sense of comfort with being around this family that lives 756 miles away

Three days to visit

Three short days for him to have time to get to know these strange people

People who are “strange to him”, unknown

I feel proud of how well he is doing

He has come such a long way on his journey, overcoming social anxiety and obsessive compulsive disorder

It is an ongoing journey

He came out of the bedroom on his own in the middle of the gathering

“I thought I would come out to be with everyone” he told me

He made that decision on his own

Talking with him and

Encouraging him to be a part of the gathering and talk to people, to at least say hello

He has made such huge progress over the past several years

Family

Oldest son at home

Texting and FaceTime connections

Give a little bit

Give a little bit of your love to me

I’ll give a little bit of my life for you

Now’s the time that we need to share

So find yourself, we’re on our way back home

Family

Two more days to be the parent he needs in this new environment

Meeting his needs

And meeting mine

Balance

Being there for all three of my children,

And my husband

And myself

Easter

April 1

Fresh starts

Foolish fun and games amount family

Easter, April 1, 2018

You’re on the road

But you’ve got no destination

You’re in the mud

In the maze of her imagination

You’re lovin’ this town

Even if that doesn’t ring true

You’ve been all over

And it’s been all over you

It’s a beautiful day

Don’t let it get away

It’s a beautiful day

Thank you to: U2, Beautiful Day lyrics

Supertramp and “Give a Little Bit”

Five for Fighting and “Superman””

I am grateful for Google and Azlyrics

And grateful for all the poets of this world

Your words inspire me

Mommy Guilt: “shoulding” on myself

I should have…

I should have worked more hours when i was pregnant with baby number 3.

I should have returned to work sooner after he was born in January 2009.

I should have worked more and saved more while I was pregnant.

I should have returned to work sooner so our debt didn’t grow so much.

I should have known to move money from our tax rebate to pay down our home equity line of credit after my husband had a massive heart attack so that Medicaid would have kicked in sooner, rather than exhausting all that money we had from me working extra hours and our tax rebate.

The social worker should have told me the rules…

Someone should have told me that Medicaid says if you have more than $3000 in assesses (savings, checking, cash), then you wont; qualify for Medicaid…until that money is gone…

I should have applied for food stamps once we did qualify for Medicaid

I began the application several times, I should have finished it and sent it in.

I should have gotten more help then we would have less debt.

I should have done so many things….

I should have reached out for help sooner when my daughter showed signs of separation anxiety and other issues when I was pregnant with our third child.

I should have realized it was something more than just me being pregnant.

I should have gotten her help sooner so that her Obsessive Compulsive Disorder, her anxiety disorder, her mental illness did not become so extreme and severe…

I should have gotten her on medication sooner…

I should have listened to my friend who suggested it might be OCD when it was in a mild state.

I should have gotten her to a therapist sooner.

I should have researched OCD sooner, when my friend brought it up.

I should have listened..

I should have gotten her help sooner so she did not have to suffer so much..

I should have gotten my youngest help sooner when he showed signs of anxiety and OCD from at least age 2.

I should have countered when the therapist said, “i don’t think it is OCD”

I should have completed the paperwork even though it took 6 months to get it from the Development and Behavioral Pediatrician

I should have gotten him in sooner and not waited as long as I did.

I should have taken him to a mental health place sooner to get him help, medication.

I should not have had so much fear about giving my kids medication…I should have found more support when I knew that was needed.

Going to the psychiatrist should have been paid for by Medicaid.

Medicaid should have qualified people to treat my children and I should have access to finding the resources without having to jump through a million hoops and experience unqualified people and ill equipped facilities and services.

My children should be able to go to the specialists they need because of their illness even though they have government assisted health insurance.

I work in health care, I should have better health insurance.

I have a bachelors of science degree in Occupational Therapy and training in mental health care, I should be treated with respect when the people from Medicaid speak to me.

Everyone should be treated with respect no matter what their educational level.

I should be able to access information about my health insurance and services for my children even though it is government assisted.

I have paid into the system since I was 15 1/2 years old and so now that I need these services, I should receive them if I qualify.

I shouldn’t have to jump through crazy hoops because my income varies from month to month and so does my 20 year old son’s income.

My 20 year old son’s income SHOULD NOT count toward our household income for the healthcare market place and definitely not for qualifying my younger children for Medicaid or NC health choice. My 20 year old son who purchased his own car, pays for his own insurance, and pays to attend community college part time all with his own hard earned money.

I should have listened to my gut when I realized even though their Dad had survived, that my three kids had gone through a traumatic experience and would need some counseling and help…

Survivors guilt…but he lived, there is no help when your husband lives…

I should have listened to myself because I knew that experience was traumatic for all of us.

I should have let go of “survivors guilt” because he lived and our friends who lost husbands to heart attacks that same year, did not survive. “I should be grateful that he lived.”

I should on myself and others have should upon me….

And I should on other people.

It is really a bad habit and not helpful to anyone.

I should have filled out the special forms and jumped through the hoops to see if my son could qualify for grants for college costs, because they decided to use the same year for 3or 4 semesters to look at our income, the year we took out $65,000 from IRA money to pay down debt.

I should have worked more hours.

I should have been a better mom so my children wouldn’t have mental illness.

I should have been a better me so I wouldn’t have mental illness.

I should have done something different to prevent mental illness?

Is that really possible?

Do parents of kids who have cancer ask themselves this question?

Maybe they do, Maybe they don’t.

I shouldn’t have to wonder about this.

My kids friends and their parents should have been there more for my daughter when she was crippled with mental illness, with Obsessive Compulsive Disorder and Depression.

They should have given her the love and support she needed just like they would have done if she had cancer.

WE SHOULD LIVE IN A WORLD WHERE MENTAL ILLNESS IS TREATED THE SAME AS OTHER ILLNESSES, PHYSICAL ILLNESSES WHICH ARE MORE SOCIALLY ACCEPTABLE IN AMERICAN SOCIETY.

Mental illness SHOULD be classified the same as other illness because they last time I looked, my head and brain are attached to my body.

We need to stop shoulding on ourselves and on others

We need to embrace where we are now and make the best choices we can in the moment and realize we can not go back in time (not yet) and change the past. What is done is behind us and we must keep moving forward.

We need to stop judging other people and their choices and instead come from love to reach out to and help others with respect and kindness.

I give you this challenge today…

Pay attention to how often you SHOULD on yourself or on someone else.

We are often our worst critic and as moms, as parents, we are our own worse saboteur.

Love yourself and respect yourself first.

Only then can you love and respect others.

A Day in the Life of a family touched by OCD

I wrote this post over 3 years ago. I never published it.  I am going to share it as I wrote it. It feels unfinished at the end and that is exactly how our life felt at that time.  I am happy to say that Abby is now functioning like a typical 14 year old for the most part, or at least like a typical unschooled 14 year old. She has overcome so much and come so far in 3 years.  Whenever I stop and think about this, I feel speechless,breathless,  amazed at how she has overcome such a severe disability. And then I breath out as reality brings me back to my current life, because we are now going through similar issues with our youngest child.  Somehow, my husband and I have two children with OCD.  We both feel compelled to help others who suffer, Don, with his coaching business, and me with my writing. We know how isolating having a child with OCD, or any mental illness can be, and we want others to know, you are not alone, there is help.  Don has recently written an ebook on OCD. His website

 

I woke up this morning and my little one was still asleep.  I checked my phone and saw my husband’s text:  “Left at 6:50, she was still sleeping”.  I stayed put checking email and facebook on my phone until my youngest woke up at 9:30.

We then headed downstairs to check on my daughter, Abby, asleep on the couch.

She said she had been up for a while but was curled up and calm.  (Thank God!)

I went in the kitchen and got her supplements and a new glass of water and a fresh straw.

I brought them to her and gave her the supplements one at a time, dropping them into her mouth and waiting for her to  reach her body across to the table where her cup sat and drink from the straw.

I then started breakfast.  I heated up pancakes for the kids as I started some hot water.  I got pancakes ready for my 4 year old.  He wanted a special cup for his juice and so I told him to get out the one he wanted which he did.  I then started sausages and then brought my daughter’s plate of pancakes, with syrup and cut and the box of spoons to her in the living room where she sits watching TV.  I set down her plate and opened the box of plastic spoons, moving the lid out of the way for her to reach in and take one.  I pointed out how many spoons were left and reminded her that we will not be buying another box of spoons.

I went back to the kitchen and started my breakfast, cut up apple, and quinoa and got it cooking on the stove and used hot water to make myself tea.  Jason was done eating now and so I got his vitamins out.

The sausage was done and my daughter was now in the bathroom.  I called up to her but she said she was too full for sausage.  I put them away in a container and labeled it “Abby” and then I put on some other sausages that she doesn’t like but Jason and I will eat.

Then she called me upstairs to help her wash her hands.  I pumped soap into her hands and then turned on the faucet, waited for her to finish, and then turned faucet off for her and went back downstairs to kitchen to finish making my breakfast.

Jason managed to play by himself and things were relatively calm.  It’s easier when only two kids are home.  My oldest had spent the night at a friend’s house.  And my husband had an all day workshop and wouldn’t get home until after 6pm.

I managed to eat, and make a batch of nettles (I soak dried nettle leaves in hot water to make an infusion which we then let cool and freeze in ice cube trays to use daily in smoothies and to drink.  Nettles are full of minerals and great for allergy relief.)

Keep in mind that my 4 year old talks almost continuously and comes in frequently to tell me or show me something or requests me to come see what he is doing.  Abby and Jason managed to play together briefly but it ended because Abby made too many rules and Jason came to me crying.  He desperately misses playing with his sister but it is not easy to play with her because he can not touch her or her spot on the couch and she does make a lot of rules when they play.  Abby tried to negotiate with him asking him which rules he didn’t like, but Jason was done.

By now it was about 10 am and so I reminded Abby that she was supposed to be Skyping with her cousin at 12.  Her cousin lives in PA and about 2 times each week they chat on skype or Google Chat.  They are working on a story together and building a house for the imaginary family on Google- Auto Desk Homestyler.

I ask her if she has a towel to use after she showers and clothes to wear.  I go to the kitchen to finish cleaning up, unloading the dishwasher etc.  She finally decides she needs to wash clothes and her towel as well as sheets.  she goes upstairs to get her clothes and comes down, “Mom, I need you to open the washer”.

“Just a minute”  and then I head down and open the washer, she drops clothes in and I tell her to get more and then I start the washer and add the soap.  She brings a few more items down and her towel but tells me she can only wash the clothes she is going to wear today.  And I tell her she needs to wash more because I can not wash clothes for her every day.  She gets mad and huffs off.