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Archive for the ‘mother’ Category

I was lied to, back when I was in lamaze class.
Pregnant with my daughter, a scared, 20 years old, and feeling so lost and alone. My husband had left me at 5 months pregnant, I had lost my job and was homeless, so I moved back home with my parents. My mom stepped in, doing all the things a partner should be doing. She went with me to the lamaze class, just as she had gone with me everywhere else those past 4 months. Through all of the doctors appointments, nursery shopping, walking in the evenings, preparations for the baby, she was my constant companion. She rubbed lotion on my legs when they ached, she cooked nutritious meals for me and my baby, she listened as I purged the history of my abusive marriage and told the deepest and darkest of my secrets, never judging, never criticizing… just loving me and being there for me. We quickly became best friends and as a joke I started referring to her as my “diary”.
As we sat in lamaze class, me between her knees my back against her chest, feeling her breath on my cheek, holding her hands as they circled my growing belly… the lamaze teacher told us simply, “Child birth is the most painful thing you will ever experience in your life!”
She lied
Losing my mom, watching her take her last, gasping, breaths… THAT is the most painful thing I have ever experienced in my life. There is no epidural for that. There are no drugs available to “take the edge off”. There are no focal points, no breathing exercises, no coach, no support partner. Just you, alone in your grief, alone in your emotions, alone in your loss.
The labor pains began when Mom informed me, first and alone with her in her hospital room, that she had cancer and had been hiding it from everyone for over two years.
The news socked me in the stomach harder than any upper cut ever could, knocking the air out of me. I was stunned, automatically feeling ill, panic rising in my throat I ran from the room looking for a bathroom, a lounge, any place I could be alone in my shock and pain. I found a lounge, and a hard orange, plastic, chair. I sat, gasping, shaking, crying silently into my hands with panic. Screams of “why MY mom?!?! Why now?!?! Please God, NO! Don’t take her from me!?!” streamed through my head. I was only there a few minutes, quickly gathered myself back into a tidy package of strength and stability, and returned to mom’s room.
She needed me to be strong, to hold her hand, to be there for her as she had been during the birth of both my children.
My sister, dad and I talked her into fighting the cancer. Begged her to give chemo a chance… for us. Mom was scared of chemotherapy, terrified really. She had watched her parents, family and very dear friends suffer more from the effects of chemo rather than the actual cancer itself. That’s the reason behind her hiding her cancer for so long, not wanting to have to subject herself to the effects of chemo. We knew her reasons, but still selfishly asked her to fight, and because of her love for us, she fought. She fought valiantly for 2 years with only a few minor set backs. She was forever a lady, never complaining, never asking “why me?” She just went into treatment like she did everything else, just daring it not to work, demanding it listen to her and make her well. She became thin, tired, sleeping often and staying nauseated most of the 2 years.
I got to where I was calling her 2-3 times a day, checking on her, telling her funny grandkid stories, saying “Thank You” for every little thing that ever popped into my head that she had ever done for me the past 38 years. Daddy took wonderful care of her also, doting on her, feeding her, driving her over on the days she was too sick to drive. Taking her to the hospital when she was so sick with Pneumonia that we were worried we were losing her at that point. He never left her side. We all fought together.
During these two years of her being sick and going back and forth to chemo and PET scans, blood work and boughts of Pneumonia, I tried my best to be there by her side. I was busy by now with two children and working nights and weekends in labor and delivery. I would stay in town after work long enough to sit with her in the waiting room and her being hooked up to the drip. She always felt bad when I did that, always worried I would be too tired. “You go on home, honey! I’ll be fine, you need to sleep”, she would say.. I couldn’t tell her I was clinging to every second I had with her, clinging to her every breath. I would just obediently kiss her cheek and tell her “I love you”, and go home. I remember those mornings at the Oncology Center, how the nurses would light up when they saw her come in, everyone loved Yvonne, she was always so sweet a gracious, asking about them and their families, she was always selfless in that way, never wanting to talk about herself or her health, it was always about others.
Finally, one day, the news came that she was “all clear”, she had fought and won, she was in remission.
She started getting her strength back, began walking again, immersed herself in her church activities more than she even had been before. She walked in the “Walk for a Cure”, both as a survivor and as a caretaker for her parents. She had beat cancer! She had won, we all thought.
What most people don’t realize, us included, is that once you have poisoned your body with chemotherapy, you become more susceptible to infection, your immune system is shot, plus the type of cancer she had also wreaked havoc on her heart and arteries. She was a ticking time bomb.
She started pushing herself too hard. She had missed two years of life, and she was in a hurry to catch up. She became involved in writing the history of our church for its 100th anniversary. She worked tirelessly on a book of music and songs composed by a lady in our church, then soon became that same lady’s caretaker. She started keeping my son for me on the weekends I worked nights, driving him back and forth to school on the days I had to sleep. She dove into everything she did, head first, like it was a race…she hardly ever came up for air. I complained one summer morning, on the phone to her, that she “never had time to sit a visit anymore, she was always too busy doing for others, I was losing her”. “Well, honey”, she replied, “I have too much to do… and if I don’t do it, who will?” Perfectly mom in her reply.
That was in August, little did any of us know, she had already had 2 heart attacks. Non of us had a clue she would be gone in a matter of 6 weeks.
The labor pains became more persistent.
I knew something was wrong when I saw her the first week of September. I felt it. She was so thin, pale, almost a yellow color. She just didn’t look like mom. I questioned her and she dismissed it as being tired and run down from worrying about her friend. I still felt there was something more, but mom could convince the Pope he was Baptist if she had a few minutes alone with him, so I left it alone.
By the 29th of September she was in the hospital and 9 short days later, she was gone.
Just like that.
I compare losing my mom to labor.
It’s happening, be it fast or slow, things are changing. No matter how hard you fight to maintain control, no matter how hard everyone works to stop it, labor, and death, both march on.
I fought for my mom for 8 full days. I only left the hospital, her side, when forced by nurses with threat of having me committed to the mental hospital. I argued with surgeons, doctors, nurses, I threw so many residents out of my room it quickly became a joke among hospital staff.
I had promised her in the ER that she could trust me, that I wouldn’t let them put her on life support, I wouldn’t let them do heroic measures, to let her go if it came to that point, she made me promise, so in trying to keep up my promise I focused on, NOT letting her go. I was a woman on a mission… a mission to “fix my Mom”. I dreamed of her waking up and telling me how much she loves me and she could not have “made it through without me!” I focused on keeping her beloved “pink stuff” on her lips, I talked to her, played hymns that she loved on my Kindle for her, I read to her, I brushed her hair, covered and uncovered her feet, and silently prayed over and over that she stay with me.
Just as labor, the moment came when it was time to push.
There was nothing more the doctors could do. She was brain-dead.
Just as some women have beautiful birth stories, some women have beautiful death stories.
“Oh she smiled at me then closed her eyes and breathed out her last breath.”
“I told her it’s ok to go mom, and so she did”.
I’ve heard them all before, I am sure there are some very beautiful stories out there…
My moms story is not like that.
It was horrific, absurd, terrible, hilarious at times, painful and awful.
The hospice experience was everything BUT peaceful. (Maybe someday I can write down the events of that night, but now is not the time.)
I had been very proactive that entire day, I knew in my head that mom was already gone, that this was just her body lingering, so I tried to stay busy and continue doing for her, in hopes that she was in the room, watching, somehow. I fixed her hair, applied her makeup, washed her hands and filed her nails, not talking.. just doing.
After the removal of the breathing tube, the stepping in of hospice, the transferring of her from one building to the next and getting her settled into the room at the hospice, we were informed she would most likely be struggling for the next 6-9 hours.
Around hour 4 I realized this was it. I could no longer stop this from happening.
It was around hour 5 that my body went into shock.
It was around hour 6 that I started to give birth.
I gave birth to the pain, the heartbreak, the realization that I would never ever see my mom again. I would never hear her voice, feel her cool hands on my face, feel her play with my hair as I laid my head in her lap. I would no longer be called “Momma’s baby”. I was losing my mom, my best friend, my everything… and I could do nothing to stop it. The pain was unbearable.
I suddenly couldn’t look at her. I couldn’t stand the sight of her. I hated her for leaving me. I hated her for rather being with Jesus than with me! I was so disgusted by this pale, gasping, stiff corpse that had taken the place of my sweet, precious, beautiful, mother.
I wanted to beat it up! I wanted to scream at it! I wanted to demand it bring my mom back and it go away instead, but all I could do was cling to my boyfriend and wail as my heart literally crumbled.
If you don’t belive you can actually feel your heart-break, then you are one of the lucky few that have never lost someone who you love more than yourself. My heart literally hurt, felt bruised, for several days after mom died.
Then, at 5:35am, the nurse quietly said “she’s gone”.
And that was it. I no longer had my mom.
I had gone through the entire ordeal, the entire loss of my mom, without meds, without an epidural, without her to hold my hand. I was now a woman alone, a woman without a mom.

It’s common to think back on one’s life and say, “Before I had kids I…”
or “After I had kids I was changed in many ways, like…”
Well, it’s the same for losing my mom.
Before I lost mom, I was so carefree and innocent. I was still a child in so many ways. I relied on her for so many things. No matter how mad I would get at her, I still knew she was there for me if I needed her. She was my best friend for so many years. She was my confidant, my babysitter, my sister, my boss, my teacher, my everything.
My thinking is different now. I feel suddenly, old. Like I aged 100 years in those 6 hours.  Like I now have privilege to a well-kept, ancient, secret… you can live through the pain.
My writing is more difficult to produce, less creative. I look back at things I wrote just 2 years ago and think “silly, nieve, dumb little girl! How simple life was back then!”

Life will go on without my mom, I realize that. I have to keep going, for my children, for my daddy, for myself. That’s what mom would have wanted. I know she is proud of me… I do, really.
And in writing this, I am hoping I can start finding some closure and some relief from the constant pain of loss and abandonment.
And just like the birth of my children, I will always have my own personal experience of my moms death. Nobody, Nobody… has any magical words that will instantly make me feel better. No amount of scripture can make me start “rejoicing in her heavenly rebirth”. Although I appreciate all the cliché  words and phrases so many people have said to me this past 7 months, non of it will ever make me feel instantly better. Sorry, but I will never think “Oh, Wow! Thanks for telling me my mom is in a better place!” because I am selfish and I am in pain, and I’d rather have her here with me.
I have given birth to the loss of my mom… and it WAS the most painful experience I have ever been through in my entire life… but I came through it, bruised and bleeding… but gradually healing.

Someday I will only have sweet memories of mom, and the happy times we shared over our 39 years together.

Someday, the pain will fade… just like the pain of childbirth.

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Each week seems to bring with it, a sort of “topic”.  Maybe it’s started by the events of the past 7 days, but usually ends with the therapist tying it all together with a nice little, reality, bow.

Last week it was intimacy. I really, really, meant to sit down and blog about that, and the movie “HER” and all things regarding  intimacy. . But alas, time got away from me. Maybe next week.

This week the intimacy topic carried over and we went deeper into Vulnerability.

When I think of the word vulnerability, it literally strikes fear into my very core.

Wait, Strike that.

It’s not the actual act of being vulnerable that scares me, rather the rejection that may follow my being vulnerable, that truly scares me.

I have been vulnerable all my life.  I was born that way.  I have never known how not to be vulnerable and allow others to see that in me.  I have always been open with affection and words.  I have cared tenderly for little animals my cat would bring up from the barn, animals that had no hope for living, holding them as they lay dying just so they wouldn’t  die alone.

I have always made friends with the new kids or the “odd man out” at school, never wanting this person to feel rejection or sadness.  Not caring what the other kids thought.

I always opened myself up to my mother in everyway possible, knowing full well she might disapprove, reject or even punish me, but still showing her the messy.  I know life is messy, but I am not the type of person to openly embrace the messy, that is not the way I truly feel inside, rather it is how I was raised to be.  Life for mom, was not supposed to be messy, the messy parts were to be hid away in a box, never to be shared with anyone, not even your children or spouse.  Then came along this messy, open, chaotic little mess (me) and  try as she might, I could not be contained like all the others.

I long to be accepted.  I long to be validated and listened to. I strive to be a voice among millions that has a vulnerability and a humanistic quality that people want to hear, want to embrace and ultimately approve and love.

I guess I have always been my most vulnerable with my writing.

Granted, writing is just a form of hiding oneself away from face to face contact, but when you send the link to a parent, boyfriend, friend or even just post it out into the cyber world… you really are allowing yourself to be vulnerable.  Vulnerable to judgment, rejection, disbelief or even ridicule.  I am my most honest when I am sitting in this chair, facing this computer screen and pouring my heart out to whoever happens to read.

In order to get the things we most crave, (love, acceptance, support, friendship, etc…) one must be vulnerable to some point.  I realize now, that I have been clawing, screaming even, my entire life, for SOMEONE to accept me at my most vulnerable.  I thought that was my mom.  I thought, next, it would be my sister, or dad, or a best friend.  None of those people have been available so I chose my boyfriend.  I have been my very most vulnerable with my boyfriend these past 4 months.  It makes me very uncomfortable to think about how very vulnerable I have actually been.

I the past I have tried hard to never seem vulnerable to him.  I had been vulnerable with men in the past and only got hurt, rejected or ignored.  So, I made a point of never allowing the CG to see me without makeup, smelling bad, being depressed, moody or even not happy.  He really did not ever know me, the real me.  The week my mom laid in the hospital bed, dying, he saw all of me.  I didn’t have the strength or the thought to try to hide the vulnerable child I was at those moments.  As she lay in hospice for 9 hours, dying, he literally held me up on my feet as I wailed and sobbed, and then went into shock, completely unable to function on my own.  He saw me at my most vulnerable.

The weeks that followed, he saw me angry, moody, depressed… but most of all… vulnerable.

Suddenly, one morning a few months later, I opened up to him about my past, purging all thoughts, vomiting up my most shameful secrets, telling him things I have done to others, with others, to myself.   My very most vulnerable self was opened to him.  He listened, he stayed steady and supportive, and he never did reject me.

As time healed my grief, I have found myself thinking back to that openness, that vulnerable time in my life, with shame and almost remorse.  Oh No! What did I do? Did I tell him TOO much? Did I reveal more than he ever should have known?  Does he secretly judge me now?

I felt him pull away a few weeks ago, or did I?  Is it just me feeling insecure about the things I told him? Me judging myself? Probably.  Is  it because he knows too much and now he himself feels vulnerable and uncomfortable being around me? Probably not.

Vulnerability is a very tricky little thing.  Especially for a woman, and especially for a woman that loves as deeply as I do.

I think being vulnerable has caused much of my own problems in life.

I am my most vulnerable now.

Am I scared of rejection and judgment? Constantly.

Am I going to let this change the way I view the world and how openly vulnerable I am with all those around me?

Probably not.

 

 

 

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Being a Mom is difficult, even in the BEST of situations!

I see my friends struggle with motherhood all the time.

Sometimes I can laugh and agree with them. Sometimes I empathize and feel their pain. Sometimes I bite my tongue and don’t let my opinion or disagreement be know, and sometimes I actually learn something.

Sometimes I learn from myself.

I became a mom at the tender age of 20.  Still merely a baby myself, I had so much to learn.  I tried my hardest to be a good mom, I never neglected her or abused her. I actually OVER doted on her and spoiled her in my effort to have her love me more than her (mostly absent) father.  I do look back and see glaring mistakes I made with her along the way…. mistakes that I wish I could undo or make right, but that’s all part of growing up, right?

My daughter was showing signs of mental illness and gender identity problems even at age 6 and 7, long before it was “cool” to be gay or “accepted” to be Bipolar.  I worked hard to get her help and counseling, but there was little know then about these issues.  Abandonment by her dad at age 12 did little to help the state of her mind.

I myself struggled with panic disorder and depression, anxiety and PTSD, making it difficult to function normally when I even did function.

Add to this already simmering pot of potential disaster, a screaming, broken, sick all the time,  baby boy… and you have a house full of exploding emotions.

I remember one night when Owen was about 2 months old, he had been crying for hours (again), nothing could calm him, he was in a terrible state.  I finally put him in his bouncy seat, in his crib and went to the bathroom to weep.  Marissa came in the bathroom and placed her hand on my shoulder, tears in her big brown eyes, and with all the courage a 10 year-old can muster, she simply said “Mom, I think it’s time to send him back… I think he’s broken”.  It is funny now, but at the time… I wondered if she was right?!?! What had I done to our little family?  I had no business being a single mom, AGAIN.  I saw the future, and it terrified me!

Of course, you can see I didn’t return him to the hospital, abandon him or give up… no, I actually started working harder to “fix” him.  Only to run into wall after wall of phoo phooing doctors, old fashioned parents, strange advice from anyone on the street that was brave enough to approach us, and more simply… isolation.

It’s funny how fast friends will run away from a screaming baby.  They run even faster from a screaming, violent, still breastfeeding 3 year old!  Nobody would babysit, nobody offered to play with him so I could sleep, or study, or even take a shower.  Owen was kicked out of 8, EIGHT, Amarillo daycares by the time he was 4 because of his behavior.  He cried spontaneously, was very anti-social, smart but bored, couldn’t talk, had daily meltdowns, and was sick all the time.   I became very dependent on Marissa, even at her only being 12,  so I could do some things alone.  She learned how to pacify him, she put aside her own problems and tried her best to be a grown up, poor baby, she did a wonderful job.  But Owen was still broken.

I almost got kicked out of school due to Owen being ill all the time, I don’t know how many times I was written up at work for missing due to my sick child, or my being late because of his morning rages.  I was falling apart in every area of life, so was Marissa… we were a complete and total mess.

I never saw the seizures.  I never knew what to look for,  I hate so bad to admit that now, but I was unaware, untrained.  I want to blame the many doctors I took him to, I feel that they should have seen these gelastic seizures, his missed milestones, something that surly pointed to his seizures. However, they didn’t… and neither did I.  I just continued doing all the things I knew to do… hide us all away like a dirty little secret.  He would become raging and violent in the grocery store, people would stare, so I would spank him… proving to these strangers that I was NOT going to let this spoiled little boy get his way! At home when he would rage I would spank him, shut him into his room, hold him down, throw him in a cold shower… all done in hopes he would stop screaming.  He was violent towards me at these times, coming at me with toys, hitting, biting.. such rage in those eyes! I felt surly he was possessed or mentally deranged, I knew I was raising the next mall shooter…I knew I was the worlds worst mom!  I just knew he hated me!  He never hated me, though, for any of these things, it was like he never remembered… now I see that he really didn’t.  He was seizing, not tantruming, Thank God he doesn’t remember… cause I sure do.. and my heart cracks in two every time I remember how I treated him.

One day, Owen was about 3 1/2, he had just gotten kicked out of his 8th daycare… I was at a complete loss, crying and screaming at him, completely frustrated… so I drove straight to Dr. Habersangs office, plopped Owen right on the counter and started screaming a the receptionist “Please!!! Help us!! I don’t know what to do with him! Something is WRONG with him and I want you to FIX HIM!! PLEASE!!!”  This was the day Pia Habersang diagnosed him with Aspergers High Spectrum and a complete over growth of yeast in his digestive tract, ears, throat and urinary tract.

I finally had something to work with, to research… and ultimately blame.  Aspergers.

It all seemed to fit, mostly.  The allergies, the tantrums, the cognitive development delays, his being so smart, but yet so different form the other children around his same age.  This HAD to be the answer!

The rages became fewer and further between with the addition of the new Gluten Free diet.  He still had trouble in school and with large groups of children, but he was starting to become a little boy, rather than the monster he was for his first 3 years.  Ages 4-7 he did fairly well, only raging about once a week, usually right before he started getting sick, or if he had an over stimulating day at school.  One of the things I started to notice by this time was that weather and time of day affected him.  Like an Alzheimer’s patient, he experienced “Sun Downers” almost daily.  I would research this, and it always said this was a characteristic of Neurological problems, not mental disorders like Autism or Aspergers.  So I dismissed that idea, Yup, never dreamed I saw a sign as far back as then, until last week.  (Kick, Kick, Kick)

Meanwhile, as Owen seemed to improve… Marissa started her decline.  Moody, violent, down right MEAN at times…. I suffered through the verbal abuse, hurtful glares and violent attacks just as I had with Owen all those years.. by hiding them away from everyone.  I would nonchalantly roll my eyes when asked about Marissa… usually playing it off as “you know teenage girls”… but I was screaming out for help in my head.  She would make up stories about me and tell people at school that I was abusing her or Owen. She accused me of playing favorites with Owen, she would get jealous of Owen and my time together. Owen and I started taking weekend road trips to just “get away” from the drama and the seething anger.  This only made matters worse. She became suicidal and regressed daily, crawling into herself… abandoned once again.

During her second trip to the Pavillion, I was crying to my mom on the telephone, I remember saying “I should never have been a mother! My son is broken, my daughter is a mess… I should just leave them now, before anymore damage can be done!”  I remember those words like they were yesterday.  The moment I said those words I realized I was at a precipice.  I had the power to change things, to change things for the better… or for the worse and just run away.  I was exhausted, frustrated, depressed and broken.  I could either start standing up for my children and get busy fixing them, or I might as well leave, because life could not go on like this any longer.  I could no longer be selfish and lazy and expect them to get well all on their own.

The very moment I decided to accept my silly little daughter for what she is, a mixed up, deep, beautiful introvert… I feel back in love with her.  The medicine helped, but she was my baby again, warts and all.  I may not agree with everything she says, does or believes… but I love her, and I will ALWAYS accept her for who she is.

As for my little son, I was prepared to live a life of mental problems with him.  I was prepared to be battered and broken at an old age, in hopes that he takes his rages out on me rather than a girlfriend, wife or friend.  I was prepared to not work outside the home for a very long time, live off of welfare in order to keep my son safe and hide him away from the cruel world outside.  I would joke that he would be a 40 year-old United grocery store sacker living in Momma’s basement.  But it hurt to think that was all we had for a future.

Now the future is here.  A possible new diagnosis, a possible new way of living.  I am terrified but also excited for this future.  I see both the good and the bad side of this possible new diagnosis.  I worry that me concentrating so much on Owen again, will cause my daughter to slide back into old fears and feelings.  I worry that if Owen does ultimately have to have brain surgery to fix him, there might be complications.. he could be permanently blinded, a quadriplegic, suffer severe memory loss….

Yes, I still suffer from my own mental illnesses, anxiety and depression being the main ones at this time.  The loss of my mom weighs on me daily.  She had become my biggest advocate, my biggest supporter, my favorite cheerleader in the crusade to “fix Owen”… and even though I believe 100% that she is the one making all this happen.. I still would give my left leg and right arm for her to be here holding my hand and stroking my hair as I worry and wait.

I have made many, many mistakes as a mother over the past 19 years.  I have also done some very unusual, amazing and beautiful things for my children.  I admit.. I am jealous of my friends and their “normal” children, and their normal, everyday, problems…  but God chose to give me Marissa and Owen… and I cant  imagine a life with anyone else.  I will continue to work hard, to learn, grow and become a better mother.  I will advocate for their health and I will champion for their happiness.  Who knows, maybe someday I WILL be a real Mother of the Year!

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So not to put you to sleep within the first paragraph, I am going to refrain from delving too awfully deep into the history of my son’s battle with (what I have always thought was) Aspergers High Spectrum Disorder.

I have always had behavioral, health, mental and cognitive problems with my poor sweet boy.  However, just anyone off the street would look at him, listen to him speak and see him as perfectly healthy and normal with maybe a few “quirks”.

I have struggled for years to find the answer to his sudden, unexplained rages. His dibilitating headaches.  His learning and memory problems have become worse in the past few years.  He has never been able to ride a bicycle or tie his shoes, but he can complete a video game made for adults in a matter of a few days.

I digress.

I quite my job to stay home with both children.  My new mission became to have Owen diagnosed with Aspergers (the only thing at that time that seemed to “Fit” his vast array of problems), so we could start receiving some sort of disability.   The same week my mother was put into the hospital, Owen was grudgingly diagnosed by a psychologist with Autism Spectrum disorder, depression, OCD and possible bipolar.  We got our first check for SSI on moms two month (death) anniversary.

I’m trying to get to the point.. sorry…

Last Sunday, while trying to coax my son away from his computer long enough to play a round of Pugopoly, he burst into tears and started telling me how depressed he is.  He stated his head hurts all the time, he feels exhausted, he can’t wake up… I knew all these things, because it has been a daily conversation for over a year now.

What WAS new to me was the feelings that he just wanted to “die” because he is so tired of hurting all the time.

Crushed me! He is only 9!

I quickly googled “child psychologists in my area and found one, emailed him and received a reply back within an hour.  I took him for his first visit on Thursday, my son’s 10th birthday.

What this Doctor did, was nothing like I expected.  He first of all stated that I may hate him for what he was about to tell me, I may call him a “quack” and wish to leave, but to please hear him out.  He then interviewed me about Owens past history, asked Owen a few questions, watched him carefully for approximately 15 minutes all together…. and then sat back in his chair and simply stated:

 “I don’t think for one second, that this child has Aspergers!”

He then proceeded to guide me down a path of new ways of thinking, different ideas and completely new possible explanations for my sons strange ways.

Auditory Sensory Disorder

Temporal Lobe Epilepsy

He gave me these explanations, told me to go “look them up” read about them and give him a call back with my thoughts.

Totally aghast, lost and a little excited… i did just that.

The Auditory Sensory Disorder sounded a little like Owen.  The Temporal Lobe Epilepsy sounded a little more like him.. but neither one matched up with his rages, mood swings, memory loss and decline in school function and fatigue.

Then, I swear to GOD, my mother guided my eyes to this one sentence:

Some children with HH have significant difficulties controlling angry outbursts, aggressive tendencies and are diagnosed with “hypothalamic rages.” These rages often can be mistaken for “temper tantrums;” however, they usually happen quickly and without an identifiable cause or provocation. 

There it was!!! Something I could identify with… I kept reading.  It sounded like my son… it sounds exactly like him, Word For Word! It IS MY SON!! What is this?!?! What does he have?! This is IT!!!! I FOUND IT!

Hypothalamic Hamartoma

hypothalamic hamartoma (HH) is a rare benign brain tumor or lesion of the hypothalamus. Thehypothalamus is located at the base of the brain, and is responsible for many of the “automatic” functions of the brain including hunger, thirst, temperature, passion, and hormone regulation. A hypothalamic hamartoma can cause many types of seizures, precocious (premature) puberty, cognitive deterioration and severe behavioral difficulties known as rage behaviors.

Here is the link if you wish to read more on this:  http://www.epilepsyfoundation.org/aboutepilepsy/syndromes/hypothalamichamartoma/index.cfm

A tumor?!!

Oh God! What do I do with this new information?! How do I process this and keep this calm and quiet over the holidays?

I know it sounds exactly like him… but what if I put him through more testing just to find out I am once again WRONG. Did my mother show me this because she knows how much it means for us to figure this out?!

So, while I process this new information, prepare for the Christmas my family expects and start a New Year without my mom… I will pray, research and welcome ANY feedback any of you have for me!

I am at a loss!

Merry Christmas!

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imagesCA4V39REI am back to talking to my mom again.

I had a very good session with the counselor on Thursday, from which a new outlook and the taking back of some power in my personal life, has since occurred.  With these feelings of peace and strength, also came a truce of sorts with my mother.  I am not sure how long this period will last, if it will just be a few days or from now on, I can’t predict yet.  I do know I am a little more at peace and a whole lot less depressed.  So that is a VERY good thing.

This morning while doing dishes (one of those mindless tasks that always seems to invoke a thread of words that I feel must be IMEDIATLY written down, thus resulting in no more housework and hours of me sitting at the computer), I had an epiphany of sorts:

My mother lost her mother to cancer around 23 years ago.  I was 15 when this happened.  I remember her being extremely emotional and upset, crying and hiding in the bathroom for hours, disowning me for being late home from ballet class, lashing out and yelling at us all.  I remained fairly detached during this time.  I was not very close with my Grandmother, after all, I remember she had been quite mean to my mother, and she really just made it difficult to ever get very close to her.  I continued to be my mom’s “good girl” but I do know I was not the “comforter” my mother needed at that time.  I was only 15.  I remember my Aunt calling me “strong” and “just who Mom needed to get through this”, but I really do not remember doing much different from how I always had been, maybe a few more hugs and a little more obedient?

My grandmother was, what I have now since learned, the epitome of the Co-Dependant parent.  She was the main reason my mother became the person she became, the mother she became.  My poor mother had no chance of ever being a different kind of mother.  Things like “co-dependant parents”, “depression”, “verbal abuse”, etc… were not discussed or even diagnosed in the 1950’s.  She only knew to raise us girls the same way she had been raised.. with an iron will and a ready belt.  Guilt and shaming were the only words she knew.  Conditions, the conditional love… all learned from my grandmother, who probably learned it from her own mother.

So, I feel I owe my mother an apology, of sorts.  I need to release this anger I have towards how she raised me.  I know she loved me, I know she did some very wrong and unfair things to me…. said some very mean things, did some things that nowadays would be considered  “abusive”,  and YES I still have a right to  be angry for those things,  but she also did some very good things, some very loving things, and she did the very best she knew how.. It may have taken her a good 30 plus years to get there,  and it may have taken me fighting every step of the way,  but she was learning to trust me and allowing me to take back some control, however small, she was giving in… a little.   Part of it may have been that she knew she was not long for this earth.  I know she was trying to prepare me.  I don’t know if she realized just HOW hard it would be on me, but she was worried.

I don’t think for a second she would have ever taken responsibility for her actions and words against me all those years, but I do think she understood that some of the mistakes she had made were very bad, and that I was being very kind to just “let them go” the way I had.

I feel like, for now, I can release some of this anger and just allow myself to miss her and at LEAST make it through Christmas and New Years without blowing my brain out with the loaded “anger gun” I have been waving around.  I hope.

I still feel like a scared little 4 year old girl that has lost her mommy… I’m just not soooo mad and accusing her every minute, thats a start…. thats a start.

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Mom, doing something nice :)

Mom, doing something nice 🙂

 

It’s hard to belive it has been 2 months now since momma passed.

I have been so busy just trying to muddle through the day-by-day… I have let the time slip by.

I went to a Christmas program with my boss Saturday night.  I thought it would be awful, but it was really pretty pleasent, for the most part anyways.  It was very hard to sit through the show without thinking “Mom would have loved this!” or “Oh, mom’s favorite song!”

I did even tear up a time or two with the sadness that mom would have really enjoyed that music so much more than I was.

I allowed myself to miss her for the rest of the evening.

I think I have been sooooo very busy being angry with her, I have not been allowing myself the time to remember, grieve and actually MISS her.

For everything bad I say about her, I can now say a good thing just as fast.  And you know, she really was a good person in so many ways.  She tried so very hard to create a perfect, christian world for us.  I think her human side, her mental state, just did not ever allow her to be “happy” with her results.  I think she might have been just as hard on herself, on the inside, as she was on us.

Today I am going to “TRY” (big emphasis on the word “try”) to put up Christmas decorations and the tree.  I am going to try to get through December the best I can.  Then maybe I can look forward to kissing 2013’s Ass… GOODBYE!

This has been one Hell of an awful year.  I’m just going to try.. that’s all I can do, right?

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According to Wikipedia:  A buoy is a floating device that can have many purposes. It can be anchored (stationary) or allowed to drift with the sea wave.
A Lifebuoy is used as a life saving buoy designed to be thrown to a person in the water to provide buoyancy, usually has a connecting line allowing the casualty to be pulled to the rescuer.

Navigational Buoys aid pilotage by marking a maritime channel, hazard and administrative area to allow boats and ships to navigate safely. Some navigational buoys are fitted with a bell or gong, which sounds when waves move the buoy.

According to me, a buoy is a tender, loving Cable Guy who is there for me to cling to when the waters become rough, violent and non-navigational.thumb_COLOURBOX2224724

He saved me.  He stayed anchored and steadfast the night my mother died, holding me up… physically holding me up for almost 8 hours as she gasped and rattled out her dying breaths.  He carried me to bed, carried me to the funeral, carried me to the burial.  He kept my head above the waves as they crashed and threatened to overwhelm and drown me.  He loved me at my ugliest.  He kissed me at my dirtiest.

He never let me slip under.  He refused to allow me to succumb to the water.  He might float away for just a moment, but is always just…there,   holding the line taut.  Watching me for signs of distress.  Ready to rescue at the very moment I cry out.

It’s always a fear, for the rescuer, that the person they are holding up, the person they are rescuing, might pull them under with their dead weight, thrashing about or panic.  No matter how hard I pull and cling, no matter how panicked and desperate I become, he is always there, steadfast and buoyant.  Holding me up, keeping me breathing, rescuing me his one job for now.

My grief, my depression, my special needs children, my anger, my pain,  my past… all bricks around my neck.  They all work to pull me back under the salt and sea.  They are a constant pull, all dragging and pummeling  me and yet my face is never completely submerged because I have my life buoy, my floatation device, my buoyant and loving Cable Guy.   My rescuer.

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