sharing my life experiences, reflections and insights as a mother, a writer, an Occupational Therapist, an unschooler, and and a spiritual being having a human experience

Archive for the ‘Parenting’ Category

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

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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.

Aunt Rosemarie

In loving memory of my dear Aunt Rosemarie

December 20, 1953- January 20, 2018

The first thing that comes to mind

Is my first year living on my own in Charlotte

I moved there in November of 1992 from Pennsylvania

I worked at the rehab hospital and only had off on Christmas Day

My parents were in Pa and my sister 3 hours away

So I spent the day with my Aunt Rosemarie, Uncle Stan and his 3 kids

They lived in Greenville, SC just an hour and half away

I was 23 and have fond memories of talking with Stan’s 3 kids, who are all about my age

I got together often with my Aunt who traveled to Charlotte for her work

She adopted Zach in January of 1997

I vividly remember her telling me she was adopting, maybe the month before

I recall thinking, that’s why you bought the mini van…

I found out I was pregnant in March of 1997 and can see myself holding baby Zach

Looking forward to becoming a mother as well, the same year as my aunt

I know she lived in Ohio In the 70s when we also lived there

And I do recall her being around throughout my life

Yet becoming mothers together in 1997 made me feel closer to her than I had ever felt

We met up at my parents house on Lake Murray and Zach called my son, baby Harrison

Then one day, they were nearly the same age

They came to Harrison’s Christening, Zach at just over a year eating everything in sight

My parents took Harrison to Atlanta to go see my cousin Stephen skate, meeting up with Rosemarie and Zach

They played uno with Grammy and stacked the deck when she was not looking

In many ways, Harrison and Zach were two of a kind

Abby came along 4 years later and I remember how tender Zach was with baby Abby

Obviously learning from his mom who loved children dearly

My aunt Rosemarie had 3 careers before becoming a mom, but like me, being a mom was the best

I remember how much energy she poured into becoming a mother and to Zach when he came along

She inspired me in so many ways to be the mother that I am

I remember going to Aunt Rosemarie and Uncle Stan’s wedding in 1988 in Annapolis, MD.

My parents were on a trip far away

But My sister brought my brother from eastern PA and picked me up at Elizabethtown College and then we went to MD

I realize now that my Aunts and uncles have really been more like cousins to me, many of who are so much closer to my age than are my much younger cousins

Aunt Rosemarie was only 16 years older than me, just 5 years older than my husband

It is so bizarre coming to Atlanta and not getting to talk with her

She was the center of family gatherings, hosting 3 family reunions here in Georgia in the summers of 2011, 2013, and 2015

I am so glad I came to all 3 and spent the time with my family

There is a hole without her present

And yet, I feel her close to my heart

Urging me to write and share my truth

I could go on with more memories and yet I will close this post with the inscription from inside her memory card

I’ld like the memory of me

to be a happy one.

I’ld like to leave an echo

whispering softly down the ways…

Of happy times, & laughing times,

and bright and sunny days.

I’ld like the tears of those who grieve

to dry before the Sun,

Of happy memories that I leave behind

when the day is done.

I Will Be OK 

Songs can bring me out of my darkest times if only for a moment. Sometimes all I need is that moment to propel myself forward out of my stuck place.

You’ll be okayYou’ll be okay

The sun will rise

To better days
And change will come

It’s on it’s way

Just close your eyes

And let it rain
‘Cause you’re never alone

I will always be there

You just carry on

You will understand
You’ll be okay

You’ll be okay

Just look inside

You know the way
Let it go

Fly away

And say goodbye

To yesterday
‘Cause you’re never alone

And I will always be there

You just carry on

You will understand
And I will be strong

When love is gone

I’ll carry on…
You’ll be okay

You’ll be okay

The sun will rise

To better days
You’ll be okay

You’ll be okay

Just close your eyes

And let it rain
When you need it the most

And all you’ve got is a prayer

You must carry on

You will understand

You will understand

You will understand
You’ll be okay

You’ll be okay

You’ll be okay.
Thank you once again to: A Great Big World

I was so fortunate to hear you live when you opened for Phillip Phillips and Matt Nathanson.

Such a wonderful experience taking my daughter to her first concert. And one of my favorite opening bands of all time that I first discovered at the concert. You have such meaningful lyrics that are simple yet powerful as well as such an upbeat soul to your sound that brings me much joy. Your music has been what I have needed most in such a difficult time in my life. How ironic because I took my daughter to hear Phillip Phillips because of how powerful his music was for us in her most difficult time in her life. I know it helped me through the pain. And it formed a bond between my daughter and myself.

And thanks once again  to A to Z Lyrics for making it so easy to find the full lyrics.

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.

 

Dealing and Coping with Mental Illness

One of my biggest challenges in helping my children with their mental health issues, has been doing so while dealing with my own mental health issues.  I have diagnosed myself with Bipolar 2 because the mental health professionals have failed me in that area. They diagnosed me with Major Depression despite my repeated information on my bipolar symptoms. One practioner wanted me to see if my insurance would cover generic testing, in part to see if Bipolar disorder was likely. I don’t need to take a test for that. My brother is diagnosed with Bipolar 2 and has been for a long time. My brother and I share much other genetic similarities. 

I have found in helping my children, that I have been more qualified than the so-called professionals with diagnosing myself and my children. Especially my youngest child who I know has OCD and social anxiety despite failed attempts with professionals to get these diagnoses. I am a health care professional after all and hey, who knows my children better than me? No one. I homeschool/ unschool them based on my knowledge of who they are so I guess we unschool mental health too. 

That being said, we do use professionals for assistance. We have a OCD specialist therapist who has been vital in helping both my daughter and my son.  But we have been unable as of this writing to find a well qualified Psychiatrist who specializes in OCD.  We had one that was competent and who we liked (we liked her even more after we went to other Psychiatrists) but she was self pay only and we already have enough debt from medical expenses. 

Back to my intent of this post….

Helping my children when I myself am suffering my own mental illness. 

When I look back over the years, there are large periods of time that feel like a fog and in those times, just getting through each day was a big challenge for me.  One area that has been a big issues is getting my children help or following through with referrals and other things when they are doing better. 

When your child suffers with mental illness, it is exhausting, emotionally and often physically. When, they are doing better, there is a feeling of relief and wanting life to “just be normal for a while” or more normal.  As an example of this, last spring, my youngest had a severe flare up of OCD, anxiety and behavioral issues.  We went to a hospital ER to get immediate psychiatric help but because he was less than 7, we could only seek a referral to a developmental and behavioral pediatrician or go to the local mental health behavioral unit which would have been at least a 3-5 hour wait without knowing if they could even help us. We opted for the getting referred to the pediatrician specialist which involved going back to our primary for the referral and then I called to follow up but did not receive any information from them for 6 months.  I repeat, it took the Develpomental and behavioral Pediatrician practice, 6 months to send us information in the mail to complete to be seen.  Well, 6 months later, he was doing so much better. We had started OT services as well as going to the therapist we already had for our daughter. I intended to fil out the paperwork.  I must add that about 4 months prior to this visit to the ER, we had taken him to a psychologist for evaluation, but she was unable to complete her evaluation due to his inability to answer all her questions and complete her tests. It took her a couple months to send her results to us which said nothing really that I did not already know. 

Back to the referral to the pediatrician specialist.  I truly intended to fill out this lengthy paperwork to get my son seen.  I even contacted a friend who had taught him in a class situation to help with filling out some of the information. Since we homeschool, we don’t have a teacher to answer things.  He also acts differently with me than with other people, so I thought her input would be helpful. She is also the person who first pointed out the idea that he has “social anxiety”.  Yet, I have yet to begin to complete this paperwork. Now, I want to get my daughter referred to this practice in my hopes that they will have experience with OCD, particularly child-onset OCD. Because, she needs a prescribing doctor to follow her on her medication. Our previous Psychiatrist, who we did not like at all, does not take our current insurance. 

So why did I not fill out the paperwork for my son when they finally send it to me, 6 months after I requested the referral?

The only answer I really have is: my own depression and anxiety. 

My own depression made doing daily activities difficulty and anything extra was really a stretch for me to complete. I just did not have the time nor the energy to do it. I wanted to do it. It bothered me that I did not complete it. I also think that I did not have much faith anymore that these so called “professionals” could help my son.  Having the experience of taking my time to go to the psychologist assessment and gaining nothing from the experience other than frustration with the incompetence of the psychologist with knowing how to handle a kid with severe anxiety and getting help for us, I had little motivation to pursue this next avenue of help.  

So was it my depression and Axiety that prevented me from getting the help for my son?  

Or was it because I no longer believed that the professionals could help my son?

Most likely a little of both. 

I took some steps today to get my children the help they need.  Despite the utterly inadequate NC government health care system, I soldiered on with 2 different phone calls and even talking to the person who is my “case manager” who I find particularly incompetent and unprofessional.    I know know that I need to do research to find a psychiatrist that takes our current insurance, NC assisted: NC Healthchoscie for Children (when your income is too high for Medicaid). They had Medicaid until the beginning of this year. My husband is self employed and my prn work status does not qualify me for health insurance through my employers. I work 2 jobs. 

I also plan to find that paperwork and fill it out for my son too. Hopefully, I can find it, buried in the piles of paper at my desk. And I do plan to ask my friend to help me fill out the information. She now has seen my son at least weekly in class and might have some valuable insights and opinions to share. 

So this is my affirmation to myself to make these items a priority. 

If you also deal with mental health issues and have other family members with mental health issues, I would love to hear your challenges, thoughts and insights.   Let us help each other. 

Cuatro De Mayo: Celebration of 5 years of Rebirth

On Wednesday, May 4, 2011, my 51-year-old husband suffered a massive heart attack in our home, coming in from moving the lawn with a weird pain in his upper back on the right side which later traveled up his neck and around his ear.  His RIGHT arm was cold and clammy. Despite, my years of CPR training required for my work as an Occupational Therapist, it took me a while to realize that this was indeed a heart attack. His symptoms were atypical. It is usually the left arm and later, the doctor told him, “you had a heart attack like a woman”.

I remember searching in the basement for my bag from when I worked in home health care- over 5 years earlier- for my stethoscope and cuff.  I remember his pulse was faint and slow. Looking back, I don’t know why it took me so long to call 911.  Don had no idea he was having a heart attack.   I finally called 911 and frantically searched for aspirin that I knew we didn’t have when the 911 operator asked if we had any aspirin.

About 5 minutes after the medic arrived, Don went into full cardiac arrest.  It looked like he had a seizure and he became unconscious.  I remember the other medics arriving just as this happened and remember them rushing us out of the living room where we all had been standing and watching as Don went into full cardiac arrest.  I recall walking the children around the corner into the kitchen and sitting on the steps and I began tapping (EFT).  Looking back, I believe the only way I was able to do this was that Don’s spirit was alongside me.

I could hear the medics and understood everything they were saying.  I listened intently to them as I made an effort to comfort my kids.  They used the defibrillator and I could hear them say,“he has a pulse but it is faint”.  If memory serves me right, they used the defibrillator 3 times while he was in the living room before they moved him out to the ambulance to get him to the hospital.  He was in ventricular tachycardia when they left and his face was dark blue. 

 I am forever grateful to the Robinson’s Volunteer Fire Dept. and that medic who stayed with me and asked me, “Do you have someone you can call?”  

My mind went blank. Who should I call?  He asked about family or friends.  I had many friends but tried to think of someone who lived close.  I then though of Lia who lived only about 10 minutes from me and called her and her mom took a message which she quickly got to Lia.  Lia arrived quickly and drove me and the kids to the hospital.  The medic offered to follow me to the hospital, but I knew I needed someone else to drive.  And then Lia could stay with the kids.  As I type this 5 years later, I can picture it like a movie in my mind.  I remember Lia’s calmness and her suggestion to drop me off at the emergency room entrance and then she went to park the car with the kids.  I vividly remember walking into the hospital and asking to find a bathroom first!  I wrote a post on that one.  Then I came out and asked where he was.  I remember standing just outside a small room/ ER area and the doctor telling Don, “you had a heart attack” Don was awake but did not see me and gave the doctor a crazy look when she told him he had a heart attack.  They told me they were bringing him to the cath lab.That all seamed to happen in less than a minute.  They rushed him upstairs and I never got to say anything to him.  He has no memory of that experience.

The next 2- 3 hours were the longest hours of my life. They first brought me to the cath lab floor to a very small room to wait.  I told them that my friend would be coming up with my three kids and was there somewhere bigger we could wait.  They then brough me to the cardiac cath waiting room which was empty due to it being after 6pm.  The nurse or someone had told me it would be about 2 hours and when that time passed, I started to panic.  And Lia, with her calm sense of problem solving called the front desk, or maybe she suggested I do that,finding the number for me and later we learned, that they did not realize we were waiting there because usually after hours, they have family wait in one of those small rooms like they first brought me to.

We watched Idol as we waited because that is what we would have been doing at home. We had been watching American Idol as a family for a few years. Abby needed the distraction.  We ate peanut butter crackers from the vending machine for dinner.  Lia had lots of change on her.  She really was my angel throughout this experience and I don’t know how I would have done it without her. 

You can follow the rest of the story below. 

I will now share a post I started sometime after he returned home from the hospital. This post  was dated December of 2011 before I updated it.   It is a post that I started, but never finished nor shared.  I am sharing it now as we celebrate: Cuatro De Mayo, Don’s 5th anniversary of rebirth. 

I began journaling through the experience of my husband, Don’s  heart attack through Facebook posts.

I began the posts as a way to quickly update family and friends about Don.   I later realized that the posts could also serve as journal entries for my “in the moment” feelings and thoughts.

So now, just over 12 weeks later, I am looking back on my Facebook posts and will share them here.

Note: It has been nearly 5 years since Don had his heart attack.  I started this post copying all my posts from May 4 through May 10 including a blog I wrote.  Now I want to add the remaining posts for May 11- 16 to include  all the days he was in the hospital. But I have to figure out how to do that! So until I do, I will share it as it is.

This is a chronological listing of my Facebook posts. When I first did this, I went back and even included my comments in reply to other people posting to me. I left the posts “as is”including mispellings.  I added some things for clarification in parenthesis.   I also have a few times summarized a post like a conversation with Harrison that we had on Facebook. When Don had a heart attack May 4, 2011, Harrison was 13, Abby was 9 and Jason was 2.

May 4     8:56pm    

please pray for Don. he had a heart attack and is the hospital at Presby Main. all here right now. he’s in cath lab..talked to nurse waiting to hear from doctor.

May 4     10:10pm

Don is stable. waiting to go see him

May 5     4:23am

don is doing better but still in CCU and will be there several days. I Got to see him Ad talk to him and then we came home.kids did not (see him). just called to check on him. he’s improving. will know more later . going back to hospital soon. thanks for everybodys prayers. keep praying

May 5 at 7:29am

here with Don. he’s improving. in CCU all today. he can eat now. feeling some relief

May 5 at 9:07am

Thank God for 911 and the medics with Mint Hill and the other station. and the Cardiologist and nurses and team here at Presby. so glad I live in a big city. and all my friends and family and being here talking with Don and knowing he is improving.

reply to a comment:  Thanks Michele. Holding up ok. He is talking and eating and joking. Still in Cardiac care unit for t least a day or two and then to step down unit.May 5 at 10:38am ·

May 5 at 3:36pm

trying to figure when to go to hospital again and dinner for my family (with all our food issues)

reply to comments and friends offer to bring food:

You guys are awesome. I know Leslie mentioned shopping. There are things at Trader hoes (Joes) we need. We can eat some wheat but we have been eating gluten free and my biggest concern is Abby and not changing what she has been eating too drastically. She has been gluten and egg free and the other big thing with her is no preservatives and artificial colors…
Rice and potatoes and vegetables. Potatoes of all kinds…fruit is great for H and J. They eat a lot of fruit! And we do eat Ezekial Bread…found at most stores in frozen foods.

And Abby loves meat. Yet with her OCD /abxiety issues I am not sure what she will eat that others have made. She still has not been able to eat out.
I am so happy for meals right now cause I an not sure how I an getting through this other than this is far better than the alternative.May 6 at 4:44am ·

I am trying to ask for help (not easy for me) cause the other thing I may need…and right now I have my parents here til sat and then my sister in law comes in Fri – today thru Tuesday. Will be help with day to day at home…cleaning up…for those that k ow me, housework is not my thing. I love doing laundry but other than that…
I an trying to think ahead cause I know it will be great with my family…my sister in law is a nurse but she lives in St. Louis and so when she leaves…is likely to be about when Don comes home and right now that idea overwhelms me.
I am taking it one day at a time. I an just trying to reach out because that is not something I do well. And ask for help when I feel strong enough to ask for help (cause asking for help aibt easy fir me!)….but man am I learning fast!May 6 at 4:50am

May 5 at 6:18pm

back with Don at hospital. he continues to improve.

May 5 at 9:28pm

a picture of Abby and Olive- Olive in Abby’s ballet skirt

May 5 at 10:50pm

loves my family and friends. don – I love you. healthy healing heart ..tap tap tap

reply to the comments:     Thanks everyone! You know I love prayers in every form and every religious or non perspective! And healing energy and all of it…its all energy I think its all helping. In so many ways its amazing he is still here and improving.May 6 at 4:53am

May 6 at 5:08am

I would like to post a picture of my mother and also one of Don and I….can’t seam to find many pictures other than of my children…May 14 is Don and my 17th So glad my honey is still here with me….just trying to do what I need after a good 5 hour rest , while everyone sleeps… My new mantra”the past is behind me… only look and move forward”

May 6 at 5:14am

Dancing with my love at a family wedding Abby about a year asleep in my arms.

(changed my profile picture to this picture of Don and I dancing at a wedding with Abby asleep in my arms)

May 6 at 5:47am

one more source of help could be friends coming to be with kids in waiting room while I an with Don. we are going to hospital later

May 6 at 12:13pm

whoever can help me buy meeting me at hospital to be with the kids in waiting room while I am with Don. call me

May 6 at 5:24pm

thank you Lonna and everyone! anyone who can meet me at waiting room to hang with the kids over the next few days

May 6 at 10:51pm

having a good night after a rough day..fatigue hit me today. sister in law angel arrived. Lonna angel met us at hospital…talked to more friends. dons improving. hoping to sleep more tonight. Needs: taking trash to dump. strong person to lift battery so we can put lawnmover away

reply to comments:  Rough day for me. but Don is doing well…improving well.May 6 at 10:56pm

later reply to comments:  Thank you all. forgive my impersonal reply. FB and my BB are helping me through. I did sleep a good stretch. The adreneline high I was on, has ended to some extent although when I wake up, I figure I need to get out of bed and do something cause I will likely not fall back to sleep quickly. and need food and waterMay 7 at 4:43am

one more:  plan to go back to lay down in a bitMay 7 at 4:43am

May 7 at 4:41am

Slept about 11:30 til 3:30 woke with some bizarre violent dream. Called hospital, don is doing well and sleeping Yea! and he relieved his bloated feeling earlier (you know I work in health care and so I may come across weird with what I post).
The Presby nurses are awesome and answer all my questions cause I need to know as much detail as possible having an anatomy background and all.
J ust wish I could be at hospital 24/7 but it feels good to be home and be here for my kids too. We are all sleeping in my room and have gotten all to bed within 30 minutes or so once we are up there. Feels good to have them close.

reply to comments:   “Thanks Kamilla he is doing well and improving yet it will be a slow recovery and he has another artery with blockage that they have to reasses and in one month check for permanent heart damage. (figure you may understand some of this being a nurse). Getting lots of great help right now.May 8 at 9:55am ·”

May 7 at 5:00am

I need to get real organized real fast. has any one heard about or had experience with Inclusive Health.org? I was told it was a state program to get insurance for anyone. we have a major medical plan covers hospitalization at 80% but no follow up coverage and no coverage for cardiac rehab insurance agent told me to contact them and they will cover anyone.

May 7 at 5:20am

went to inclusivehealth.org NC sponsered company for coverage. went to find a local agent and list is very long for Mecklenburg County…anyone have any experience, know of anyone who has used them or an agent?

May 7 at 6:22am

found a rep in Mint Hill, sent a message. Feels good to be getting some of these things done. more sleep later in day. food and drink got rid of headache, time talking with my Dad. guess time to shower while everyone is still sleeping. plan to go to hospital by myself today once Jason is up and settled. going to let him sleep as long as he needs after two difficult early mornings. breath…..

comments:   Don should get PT today and I really want to be there when they come byMay 7 at 6:22am

comments:  “the past is behind me, keep moving forward”

May 7 at 6:22am

May 7 at 1:34pm

got to spend time alone with my honey. he got to sit up in a chair and walk to toilet. he is progressing well. he got sleepy and needs rest.

reply to comments:  “We appreciate all the prayers and well wishes and I a. Happy to let everyone know how he’s doing. Don’t mind people asking either.May 7 at 2:23pm”

reply:  “Thank you. He had stints put in right away. We won’t know if he needs more for a few months. He has to recover before they can even see how much damage was done to heart…that will be a good month before they can check that.May 7 at 11:09pm”

May 7 at 4:09pm

home with my family…my parents left. have my wonderful sister in law here. my house has. never been so clean and we have clean laundry! kids have had playmates. will go back to see don. he did sleep some

reply to comments:  “Thanks Joyce. Helps to hear that. Happy Mothers Day to you. We have lots of positive thinking going on. He lived and that is all that matters right now…he survived that..we can get through anything. Best mothers day gift ever…my husband alive and doing well.May 8 at 9:53am

-May 7 at 4:51pm Harrison uploaded a photo of Don and I (more recent photo) because I wanted it for my profile picture

May 7 at 11:12pm

we all went to see Don tonight and he was feeling much better and had slept and got to sit in a chair and visit with us. it felt wonderful. kids made him pictures. we love you Don-daddy!

May 7 at 11:20pm

I have the best mothers day gift ever…my husband is Alive and improving and I get to go spend time with him early tomorrow. challenges bring perspective …I am so grateful

Inquiry about if Don is  still in same room-

My reply:  “Yes but he may be moving today in morning don’t know when. But will move to cardiac step down unit. He apprecited you coming and is ok with visitors…he wants the distraction. Just short stay esp if he seams sleepy. He has not slept much. He slept best yesterday and was doing real well last night for our family visit.May 8 at 2:50am”

May 8 at 3:14am

just talked to Dons best nurse…Sharon we love you! and I am feeling relief. I can bring him any foods. she will get social work consult for us. she understood what probiotics are. Ahh……and she was there when the other nurse looked at me H and J and said “no children under 12 allowed”- and let us in. Daddy needs to see his kids and they him…its part of what is healing him along wirh modern medicine!

comments:  “don’t anybody tell me Don can’t see his kids! I understand the hospital policy but love trumps policy. I Will keep j in my arms in hall. Just one more day of CCU then that won’t be such an issue.May 8 at 3:17am”

Comments:  “Its just hard with all we are going through to wallk on the unit with the kids and have everyone look at you with that “why are those kids on this unit?” and I just want to shout. We are visiting their Dad! You don’t know what they saw at home with the medics….they need to see him and he needs to see them. Its part of our healing…Dons included!!!!!!!! Modern medicine is wonderful and so is love!!!!!!!!!!!!!!!!May 8 at 3:19am”

comments:  ” Its these little things that are tough on me right now. Seeing my needs more and. More as I am out of SURVIVE mode and now am moving on to other emotions and boy is it a roller coaster. But I got through him almost leaving us…I can get through anything now.May 8 at 3:22am”

May 8 at 4:13am

Sat May 14 is our 17th anniversary. I am so glad my honey is here with me! He was last in the hospital 17 years ago on our honey moon, ask us about that funny story. I love him so much.

comments:  I had a conversation with Harrison about cropping the picture for my profile picture and then about how Jason is doing.  my final comment back to him:   “Thanks. I can likely come home before he needs a nap and then come back over here. But while he is happy I will take some quiet time and be close to Dad. But will likely come home sooner rather than later for his nap…so I can nap too and then we can come back or at least I can or Ann can or something.May 8 at 9:00am”

May 8 at 4:23am

Happy Mothers DAy to my wonderful Mom! It was so helpful having you here when I needed you most. I wish I could find a picture of you to post as my profile, when I scan my pictures, all I find is the kids….:)
You are the best mom and the reason I am the mother than I am.
I love you Mom.

May 8 at 4:42am

I have started blogging about this because I know I have to and need to. And I don’t need to hide my writing but share it for anyone who wants to read it.

ginaslifejourney.wordpress.com

Perspective. Having your 51 year old healthy husband have a sudden heart attack and go in to cardiac arrest in your living room with 2 kids, age 2, 9 and 13 standing by (and thank God, the medics who had gotten there before he arrested) is a life altering experience to say the least.   …
Ahh…..talked to Dr. Iwoka. he is moving to step down today. things are going well. I like him for more than just saving the love of my love and best friend.

my reply to comments:   ” Thanks Adael! Happy Mothers Day to you. This was the most I got to talk with the doctor and watch him assess Don. Our nurse told us he was rated the Best Cardiologist. Helps to hear that. And I like how he answered my questions. It eases my mind.May 8 at 8:57am”

May 8 at 9:43am

Happy Mothers Day to all the mothers and those who act as caregivers and mothering roles….including my sister…the best big sister anyone could have

my comment:  “And my husband is included in this”

May 8 at 9:47am

*converstaion with Harrison about how Jason is doing and me waiting for them to move Don

May 8 at 10:03am

hanging in waiting area while Don tries to sleep..looking out window thinking ..one nurse told us CCU used to be labor and delivery and likely was 131/2 years ago when Harrison was born. he may have been born very near where Don is on CCU…has a spiritual kind of comforting feeling to me in a weird and maybe silly way….

May 8 at 10:10am

was able to peek in window and not click door…Don is sleeping so I am letting him rest. think ill take a walk and get my jacket in the car…its freezing in here!

May 8 at 11:14am

Jody posts a picture:

Princes Harrison and Jason with their crowns

May 8 at 12:05pm

Dad in his new room (picture)

May 8 at 12:26pm

Don is moved to Step down. things are good. great nurse here. think I will head home for a bit. this is a big step! yea!

May 8 at 2:04pm

and sometimes I need to cry and let it all out….I guess the whole thing is just beginning to sink in or are moving out of a state of shock…and over tired….I know all will be well but its ok too to say this really sucks

reply to comments:  “Yes tears are good…a release of energy and I an glad they are coming.May 8 at 4:12pm”

and another reply:  “Love all the hugs and thoughts…helps me outMay 9 at 12:33pm”

May 8 at 4:13pm

slept well and feel refreshed…boy I needed that. Ann and h and J<supposed to say A> going to see Don. me and J going soon yet cool to be home with just my J

May 8 at 7:32pm

don doing great! love his new nurses on 3D. going home for dinner with my family -1. don needs rest.

May 8 at 7:57pm

thinking about tomorrow and play mates for jason …

May 8 at 8:34pm

need to spend lots of time at hositsl next two days as Don may come home tuesdsy and I need to tslk to nurses.

May 9 at 4:41am

Out of shock and on to next stage. still counting all my blessings yet nervous about next steps of this endeavor.

didn’t get to finish my post…3D nursing staff is awesome! Presby hospital has been awesome. Feels good knowing he is in good hands there. He might be getting PT today! Eager to get to hospital and be there all dayMay 9 at 4:43am

May 9 at 5:17am

I am thankful for prolactin 🙂

May 9 at 8:18am

Don is tired today and has low grade fever. he sent me message but it wears him out to do so. can’t wait to go over to see him. kids are all still sleeping here as I BB next. to them…we are all in one room together.

May 9 at 12:39pm

at hospital with Don. he is resting but doing as expected. fever is not a concern. he will be going to cath lab tomorrow t0 have other blocked artery stinted. then will come back to room he is in now. it is about an hour procedure according to nurse (and Much easier this time since it is not an emergency)

May 9 at 5:01pm

home now. don is tired but doing well. we don’t know what time he will go to cath lab in the morning. 7am or later so I will be there by then. mom is coming back later tomorrow. got a friend who can come early and stay the day. I will be good to have the stint done to open the othwr artery and know that is behind us yet is a new venture to process and think about.

May 10 at 1:19am

got some sleep. my 3 angels are sleeping all next to me which feels so good. Ann visited Don tonight and he is doing well yet very tired. procedure sometime today…7am or later. ill be there and Will keep ya’ll posted. (I can’t believe I just wrote ya’ll…I must be a southerner now…been here 18 1/2 years!)

May 10 at 2:17am

Blogging again about this experience.

ginaslifejourney.wordpress.com

I sleep maybe 2 or 3 hours and then lay there with so many things going through my mind so I get up to get something done because there are many things to do.   …
reply to comments:  “Thank you. It means so much and I know all the energy and prayers are helping as much as modern medicine is. There are miracles happening every day all around me and I feel so blessed.May 10 at 2:40am”

This is part of an email I sent to a friend on May 9, 2011, just 5 days after my husband had a heart attack.  I have added some additional information in<> to clarify the message but otherwise kept the message as I typed it to my friend because I feel it shows the emotion I was feeling so early on in this experience.

“I think I was in shock for several days when this happened.  We had no idea he had issues other than his family history but he is the youngest of 6 siblings. We eat so healthy and he exercises…etc etc.  I don’t know how I got through him arresting in our home, thank god the medic was already here when he did and then waiting in the hospital for over 2 hours with my friend and kids, when we should have been home watching American Idol, and wondering if the doctor would come out and tell me he was dead.  I watch too many ER type shows, Gray’s Anatomy.  I didn’t even cry that first 24 hours or until I was driving back to CCU the next morning alone.
It is a relief to say these things.  I have great support in many ways but to be able to talk about this esp with someone who gets my parenting style , has good communication skills :)and with someone who has been there helps me a lot.  I know I need to call you.  Right now we are all nervous about him coming home. We want him home but after our traumatic 911 experience, <I’m nervous about him coming home to our family which includes>  my 9-year-old with OCD and my 13-year-old (his own much milder anxiety issues) and me.  I picture myself standing over him checking his vital signs every 30 minutes.  I am thankful I am and OT and feel fine with understanding his rehab, but the medical stuff scares the crap out of me.  I have to reassure my kids esp my daughter that we will have all the instructions we need from the hospital about signs to watch for but inside I am terrified.  I wish I could be with him 24/ 7 right now while he is in the hospital but feel safe   especially now that he is out of CCU with where he is .
ahh…wow…I do need to talk about this…and for me writing is even easier than talking…thus my blog  but I also need to call you and have someone who can really listen “