**My First Blog** 2/07/13
I dream in color. I have known for a while but last night I was positive. Except, I wasn’t dreaming. I awoke in the middle of the night, with a smothering feeling. I couldn’t breathe and the bedroom was as black as coal. I saw a small, bright green and white glow flickering, coming from the wall near my bedroom door and realized it was our alarm keypad. The lights then went black. It occurred to me that we had no power and my C-pap machine (for sleep apnea) was off. Hence, the smothering feeling. Talk about terrifying. (And I know what terror feels like). I truly thought I was dying and the complete blackness (other than the alarm light) was what I imagined it would feel like, being trapped in a coffin.
So at 3:40 am, semi awake, I laid in the darkness as my mind was going through a whirlwind of emotions. Thinking about the smothering feeling, I began a flashback over the years on how I lived my life and if I mattered. You know, just reflecting on the kind of person I am and if I handled all the unexpected circumstances in a positive way. I ran through the last 5 decades in my mind and it played out like a movie with music and soundtracks. Sounds crazy, I know.
If I had not had family members and friends around throughout those years to confirm all the events, you would truly think that ’this stuff couldn’t happen to one person.’ It sounds like a work of fiction. Add in grief, tragedy, some comedic moments, and horror – all thrown in the mix, and you have the highways and byways of my life. I do know though, that having a sense of humor has definitely helped me get through life.
Let’s see, I guess I’ll begin at the beginning. I was born in Hollywood, California, the oldest of three daughters. I was a sickly baby from what my parents told me and on my second birthday I developed scarlet fever. (I attribute that to my constant red-in-the-face-and-chest coloring whenever I get embarrassed). Another illness, mononucleosis, later on in junior high. I was constantly fatigued from that long illness. I attended my first 6 years of school at Catholic School, and while I was doing cartwheels on the grassy field during PE in the 5th grade, my future husband was fighting in the jungles of Vietnam during that year. The Vietnam War would be with him for the rest of his life.
Riding dirt bikes in junior high and hanging with my BFF Sheree, running around with Linda in high school and after high school and having some amazingly good times, are wonderful memories I cherish! I enjoyed growing up as a teenager in Saugus, California. A real quiet, clean little community with a small population. (Not today: it is now known as Santa Clarita and is bursting at the seams.) The high school years went too quickly and my high school boyfriend who I dated throughout those years , ended a year after I graduated.
On the day that my high school boyfriend and I called it quits (I called it on this particular date), at age 18, one month before my 19th birthday, and on a blind date, set up by my mother of all people, I met Dennis. It was love at first sight. His slightly long, light blond hair, tall physique, tanned skin and handsome mustached face made my heart skip beats. My mom TRULY must have liked him because my parents were SO overly protective of me (being the oldest and all). And Dennis was nearly 10 years older than me. I was shocked that she- and my dad- were OK with it. We were married 13 months later.
I remember vividly the hour before I was going to get married. We were at the Catholic Church and I was in a small ‘holding’ room and I was about to have a melt down. I did in fact. I had the strangest feeling come over me and I still can’t explain what it was. No, I wasn’t thinking of high tailing it out of the church like Julia Roberts in Runaway Bride, I had a ‘dark cloud-like’ emotion pass over me (and this wasn’t the first time I experienced that feeling). I had felt odd senses as a child at times, but nothing like this. The dark cloud-like feeling came back 5 years later briefly. But this day at the church, the feeling was chilling and had nothing at all to do with getting married. I took some anti anxiety medication to calm me down and it was overkill. If you look at my ‘walking-down-the-aisle’ photo with my dad, it appears that I am on a forced march to the gallows. (You can find that classic photo on facebook).
We bought our first house within a few months after getting married and less than a year later, I was pregnant. The baby was due June 22, 1979. At the time, Dennis’ health insurance benefits through the company he worked for was not all that great. In fact, it plain out was pathetic! Maternity benefits basically stunk. I was told by several different people to go to Granada Hills Hospital because they offered a maternity program for people with not-so-hot insurance. I went and was accepted and began seeing the physicians there. I saw a different doctor each month (I didn’t care for that) and they didn’t do a lot in the areas of normal routine exams. On me anyway. Or listening to their patients. From the day I conceived, I was violently ill. I kid you not, I wretched until the day I gave birth, even throughout my 10 hours of labor. I told the doctor during an exam in my 4th month of pregnancy that I felt a lot of movement going on. All sorts of soft fluttering motions at the same time, but in different areas in my uterus. They brushed it off and said I was imagining it and then explained how the baby was the size of a kidney bean, blah blah blah. (Hey doc, I have news for you, I KNOW what I’m feeling)! I knew what I was feeling and it continued each month. Too many movements all over the place. If fluttering was the term used by the doctors at the clinic to describe what a typical fetus was described at doing at this stage of development, then what I was feeling was a swarm of angry butterfly’s going crazy in there. If only I had hindsight at that time.
I continued to be violently ill 24/7 and the baby kicked nearly non stop as well. I was in bed most of the time and just felt like crap for the duration of the pregnancy. In early May, I remember going to Sav-on pharmacy and standing in line. It was on a Friday and it was as if it happened yesterday, I realized I hadn’t felt the baby move. At all. This was not typical because this baby was a non stop mover and shaker. I recall standing in that check out line and shoving my right hand against the right side of my waist several times. Trying to ‘jolt’ it from a lumbering sleep, as if I was saying to my precious bundle ‘Wake up little one’. Nothing . No response. I panicked slowly and by the time I got home I was freaking out. I called my mom and she said that maybe the baby had no room and was just getting ready for the birth. I knew, not likely………. I had another 6 or 7 weeks to go. I went through the entire weekend not having a single movement from my abdomen. I called the clinic that same Friday afternoon after getting home from the drug store and they said to call next week. Next Week! I was mortified.
Early Monday morning when I woke up to my normal routine of hanging over the toilet bowl, I felt a faint rolling movement inside. It wasn’t a kicking motion, but a rolling feeling. It’s the only way I can explain it. The baby ‘rolled’ until I went in to labor on June 8th.
The doctor who was on call that day was someone I never met before. (And wished I never had.) Dr. Milos Klvana. He was nice enough and I had a hard time understanding his speech at times because he was from Czechoslovakia and had a heavy accent, but I understood enough. My water had broken the night before, in a Carl’s Jr. of all places. Lovely. Dennis was with me in the delivery room and it actually wasn’t as painful an experience that I imagined it would be. At 4:07 pm Kimberly Ann was born. She was small, 6 lbs. 4 oz. The minute she was born Dennis left the room to go tell the grandparents. Right after he left, the anesthesiologist who was standing by and who was sitting at my left ear, said “Get ready to push again.” “Oh”. I remembered that the placenta needed to expel. After I pushed a few times, the doctor, nurses and everyone else nearby turned away from me and went across the room. I was laying there thinking “Wow, this must be some special afterbirth” and then the doctor walked back to me and I had the urge to push again. Again? What the heck? While I was now expelling the placenta, Dr. Klvana told me exactly in this manner: “You had another baby. It’s dead. You might not want to tell your husband about it.” I was laying there, trying to process what I just heard – and why is this doctor suggesting I don’t tell my husband. Long story short, I had identical twin baby girls. The shock didn’t hit until the next morning when a nurse casually walked in, handed me a form- the death certificate paperwork- and told me to name my stillborn baby. And to make arrangements for a mortuary to pick up the remains. In addition to feeling such loss, I felt guilty because I knew, early on in the pregnancy that I was experiencing more action in my abdomen than one fetus should have been causing. NO ONE listened to me. And I knew back in May that something was terribly wrong when Baby A stopped kicking and Baby B just rolled. No more kicking, just a rolling motion. In hindsight, as I learned, Kimberly (Kimmi) was Baby B. Learned later on that this was a rare pregnancy. The twins I carried were “MoMo” twins. The actual name is Monoamniotic Twins. Only 1% of twin pregnancies are Monoamniotic (Just the beginning of odd occurrences that I would be challenged with in life). Our baby, Melissa Lynn was taken to Eternal Valley Cemetery in Newhall, California. where she rests on a hillside. Such loss. I never had time to fully comprehend it all- but I carry it with me each day.
Kimmi was developing well but her motor skills weren’t moving along like they should have been. Especially at 18 months when she wasn’t walking. I’d bring it up to the pediatrician and I was told I ‘read too much’. There was nothing wrong with her, according to them. Okay. (Lesson learned: Always trust a mother’s instinct). (Monoamniotic twin pregnancies are not only rare, but if, IF, the babies survive, there are more likely problems associated with their development in many areas. Most of the twins both die. Kimmi is lucky to have survived.) http://en.wikipedia.org/wiki/Monoamniotic_twins
Pregnancy # 2 in 1980 was just as horrendous on my body as my first. I lost weight, one pound a day for a few weeks before I was finally admitted to the hospital for 5 days. Dr. Klvana became my OB/GYN and Dennis now worked for the Postal Service and our insurance was great. I was diagnosed with hyperemesis gravida and checked out of the hospital after the 5 days feeling worse than when I went in. Kimmi was only 18 months old and it was difficult, but my mom helped a lot. I still had 6 months to go and basically I was in the bathroom 24/7, heaving, retching and vomiting once again. When I was close to 6 months along, I told the doctor that I felt a burning/ripping sensation in the hoo-ha region when I walked. Something you never want to experience, trust me. He sent me for tests and I needed to have minor surgery- cervical cerclage. The baby was in a breech position that is not uncommon at this stage, but her foot was pressing against my cervix. I wasn’t going to miscarry, but the pressure of her foot just about slipping out of me was concern enough for me to have my cervix stitched closed. I had the surgery and I was told that the Dr. would remove the 4 or 5 stitches a week or so before my due date. Never happened! The day I gave birth, the nurses in the labor room couldn’t understand why nothing was happening, as in “where is this baby’s head?” The contractions were hard and close together. They even had me begin to push in the labor room, before moving me to delivery. I pushed for at least 3-4 hours before they realized, while still in the labor room, that I my cervix was stitched closed and then they cut the dam things out and removed them. Finally, sweet relief! Nicole was born July 22, 1981 and weighed 8 lbs. 3 oz.
I was pregnant once again in 1982. The baby was due in March 1983. On Labor Day weekend 1982, we went to Castaic Lake for the day with my parents in their motor home. I was feeling sick (nothing new there!) and I went up to the motor home to lay down. Again, that ‘dark cloud-like’ feeling moved over me quickly, just enough to make me take notice, and then slowly breezed away. To use the word distrubing was putting it mildly, and I remembered back to my wedding day and that awful, gnawing feeling I had there at the church. Within minutes it passed. But I never forgot the wave of blackness it caused me to feel. In reflection, it was what DOOM must feel like. Was it a tell tale sign of some sort? I’m thinking yes.
I went to- what would be my last checkup at the Dr. on a Friday- and I should have seen the red flags right then and there And then ran for the hills! Dr. Klvana told me to call him AT HOME when my labor begins. Huh? His instructions were to call him at home, he’d meet me at the office (which was an office in a small shopping center right next to the freeway in Newhall) and then he’d check my contractions and we would head to Holy Cross Hospital. My contractions began on Sunday morning and luckily I sensed the day before that I would be popping out baby #3 soon, so my parents took Kimmi and Nikki to their house the day before. Dennis called Dr. Klvana’s number and we met him at the office. It was a little after 9 am. As soon as I laid on the small bed in one of the rooms, he hooked me up to an IV drip and told me it would make me relax. After I was hooked up to the IV, I learn it is pitocin. This Dr. is rushing along my contractions to a full on ‘dilation to 10 centimeters′ in 15 minutes. (Huh?- Who does this?). I’ll tell you who….. a psycho doctor! Within a few minutes I needed to use the restroom. I made it to the restroom and then I walked back to the room and laid down asking WHEN I would be going to the hospital. I needed to use the restroom almost instantly once again and this time, it wasn’t the toilet I needed. I needed a delivery room! I was told to push and within minutes I had given birth to a round cheeked baby girl, right there in the exam room. The pain was incredibly torturing and I had been given nothing for pain, what so ever. My first two girls were delivered naturally, La Maze, but this delivery felt so barbaric and wrong on so many levels. Because we thought we were heading to the hospital, my bag and our camera were in the car, so Dennis got some explicitly fantastic ( insert sarcasm here) pictures of the entire, horrifying event. Maybe 10 minutes, if that, after giving birth, I stood up and walked over to look at my new baby, who was lying on a small table wrapped in a towel. She was a healthy 8 lbs. 5 oz round little bundle and I notice that she didn’t look quite like my other two daughters did moments after birth. She was round, had tiny ears and her eyes were very red (after having silver nitrate drops put in her eyes). In fact, Dennis took a photo of me looking at her and the look on my face is telling. Jennifer was born at 10 am on March 6, 1983 and I was home, with her in my arms at 11 am. Why I was SO trusting of this doctor, is beyond me. I still can’t forgive myself for not demanding we go straight to the hospital. I was 25 and too trusting of someone who I thought was a professional. Dr. Klvana told us NOT go to a hospital, for me to go home, rest, and come back in the morning for a PKU test for Jenni . Okay………..?? I should mention, Dr. Klvana now resides in a prison in Northern California. He was arrested within the year after giving birth to Jenni. He’s been there for many years. I haven’t checked recently, but he’s STILL behind bars. His sentence was 53 years to life, I believe. He was convicted of 7 or 8 infant deaths (yes, delivering them in that office and another office he apparently ran), his license was revoked during my pregnancy- unbeknownst to me– insurance fraud and a whole slew of other unforgivable deeds). Hindsight once again.
My sweet little angel was a quiet one and I had told Dennis that I would make an appt with a pediatrician quickly to check her out. Klvana (who I refer to now– he doesn’t warrant the title of Doctor) wanted to treat her himself. It was as if he didn’t want her seeing anyone else and I didn’t fully comprehend it. (I soon learned WHY). With each passing day which was only a week since I had her- I felt that Jenni was different. She looked like a fuzzy haired, dark blond Asian. I knew deep down that she looked like she had Down syndrome but who wants to admit that to them self. Especially when the crackpot psycho doctor who delivered her hasn’t brought it up. It was suspected by the pediatrician within a week. I was shocked, stunned, depressed, disgusted, angry and saddened. UCLA confirmed positively that she had Trisomy 21. We were given paperwork to read and sent home. In a generic run of the mill letter mailed to me a few weeks later, it was officially confirmed. Heartbreaking. I enrolled her in an infant stim program immediately and my life was consumed with trying to do what ever I could for her -and dealing with a 20 month old and an almost 4 year old, and a husband. Thank God my parents helped out often.
During the early summer of 1983 when Jenni was only a few months old, I enrolled Kimmi in the preschool across the street from our house at the elementary school. After the first week of her attending, the teacher asked me pointedly “Has Kimmi ever suffered an accident? The reason I ask is that she has a lot of difficulty trying to get up off the carpet when we sit for story time and I also notice she is uncoordinated.” I told her ‘No. No accidents’ (jokingly saying to myself that she gets her lack of grace from her momma)and I knew once again, motherly instinct, that I was right all along, thinking back to the day when I told the pediatrician (when she was a year and a half years old) that she was uncoordinated and didn’t walk. She didn’t walk until she was 18 months old- and the pediatrician told me I WAS WORRIED OVER NOTHING! When she did walk, her gait was off and she favored her left side, but hey, I am only the mom. I do not have a doctorate in medicine.
Being around disabled babies and their mothers 2 days a week in the early months of Jenni’s life, I picked up on terminology regarding birth defects and what kind of miserable and unfair disabilities a baby can be born with. It was hard at times to hear other mothers’ gut wrenching stories of their newborns and what they were diagnosed as having. I was silently thankful Jenni only had Downs. I marched home one afternoon after the class and called a neurologist for Kimmi. After testing and hearing about my pregnancy history and her birth, she was diagnosed with Cerebral Palsy. I was crushed, once again. I was told to keep a watch over the years and I would see if there were any cognitive delays, which would appear over time. Great. So in 3 months time, my last child was born with Downs and my now 4 year old daughter has Cerebral Palsy and who knows what kind of brain damage. This was a such a stressful time, and I did it all without hard liquor! 🙂
Life went on and I went to work when Jenni was 3. She started public school at that time and I got a job with the school district working in Special Education as an assistant. Heck, I was qualified. Little did I know my life would revolve around special needs children for the rest of my life. Kimmi was a quiet, shy girl growing up (still is) and slipped through the cracks at school. Finally at my urging, she was tested and placed in Resource classes where she would get more individualized help. Jenni meanwhile, was the cutest little cherub but her level of mental functioning was not on her side. It’s as if I have a perpetual preschooler, but I love her to pieces and wouldn’t know what to do with myself without her. I have learned the meaning of what patience, compassion, empathy, advocacy, and unconditional love are.
As the way life had played out for me during the late 70’s/early 80’s, the 90′s weren’t evolving into a much better decade. (Hey, I wouldn’t have assumed it any other way). Life went on and after feeling fatigued beyond belief for years, and I mean overwhelming fatigue every day, I was diagnosed with Multiple Sclerosis in 1995. Having to go through intravenous steroids over many years was no picnic. Injecting myself daily in the stomach, arms, thighs, hips and backside for 5 years with a new MS drug, Copaxone, had made me feel like a walking pin cushion. I left my job and never felt so alone. I had my husband and girls but it was an enormous feeling of self loathing, and I blamed myself for all the ills of my life. My parents had moved to Las Vegas from Saugus in 1993. I had no one for emotional support. Sure I had my husband, but my soul was crumbling, not sure what the future held for me. Would I be in a wheelchair? Would I be like Annette Funicello? Would I be able to climb the stairs to get up to my bedroom? And the big worry to me was: Will I be alive to care for Jenni? Would I be robbed of my ability to walk and use my limbs? This was around the time I found comfort in eating. (A whole other blog)! Stress was compounding on me and I found solace in food. I had always been a thin gal growing up and because I am tall (5’8) I carried the weight pretty good. But with all the things I had gone through, it finally hit and I started to gain weight. 15 years of holding it all in exploded in me, and eating was my friend. (How pathetic!)
A few years before I was officially diagnosed with MS (they came to the conclusion I had it since I was 24), Dennis started having personality changes. It was very intense and when he freaked out one night when “Lethal Weapon 3” was being filmed behind our housing tract, I knew something was seriously wrong. Warner Bros. Studios sent out letters to our neighborhood, informing us of night shooting over the next month. What they didn’t mention was that they were actually SHOOTING automatic weapons at night. It was bad enough with the Flood lighting they had shining into our upper bedroom windows night after night, but when automatic weapons began firing for two – three hours beginning at 2 am and lasting until dawn, was a nightmare for Dennis. I had never seen him so crazy. Instant flashbacks to Vietnam. Filming lasted too long and I was glad when they wrapped.
We decided to move to Las Vegas in 1996 to be near my parents and I was emotionally going to be fine….or so I thought. Dennis’ issues kept up at a fast pace and it was hard to watch him change. After moving here, a few months went by and my mom- who I was so close to- was diagnosed with a very aggressive form of ovarian cancer. She fought for 2 1/2 years and passed away. It happened on the day of the Columbine shootings in Colorado. I was devastated. Shortly thereafter, I took Kimmi to the neurologist and she had MRI scans done on her brain. I learned in 1996- (1996!) that she has “Peri-ventricular Leukomalacia” (PVL). A formal title for the type of brain damage she was born with. That explains A LOT. Wish I had known when she was 4 and was diagnosed with CP…. The PVL comes first, then the CP. Who knew!
Dennis was going to the VA for testing and finally after what seemed like an eternity, was diagnosed with PTSD. He lives with Vietnam every single day and medication has been a wonder. For all of us. I only wish that the Veteran’s Affairs wouldn’t drag their feet when approving a claim. It makes life miserable on everyone involved. I like to think that I have been supportive of all the crap he had to go through with his VA dealings and he say’s I have been. I helped out in so many ways with all the paperwork because it tore him up to relive every event that the VA wanted to hear from him. Makes me feel good that I helped him in that way.
And after hearing my husband tell me for years that I stop breathing in the night, 2 years ago I finally went to a Sleep Center to get checked out. I never spend time on myself- for anything- and I hate to go to doctors anyway. (Can you see why?) But I went and slept over night there at the center. I have a large Uvula (back of the throat folks) and it causes me to stop breathing. The testing and monitors show I stop breathing 97 times an hour! God, no wonder I am exhausted. In addition to the MS fatigue, it’s a wonder I function at all! I now wear an uncomfortable face mask to bed every night. I look like I am undergoing anesthesia- this mask looks like what they use before surgery. Nothing say’s ‘Hey Baby, Sexy Me’ with a mask and hoses attached to your face. But it works. I don’t stop breathing and gasp for air 97x an hour anymore.
So here we are, married 35 + years, and I watched back over my life last night, in the darkness. I wholeheartedly know that there are people much worse off than me and my last few decades might not seem like such a hoopla to some people. I realize this. What I have realized is that I was given this path in life, almost like a predisposed gene at birth, and I ‘think’ I have done a fairly good job of survivng it all. I am normally so hard on myself and it’s OK to actually give myself some credit once in a while. (I think this is the first time I am doing so). I think the ‘dark cloud-like feeling’ on my wedding day was a sign of what was to come? Discernment, Lori. That’s how I look at it anyway. As I said before, it was the eeriest, most disturbing chill that came over my body. A fleeting moment of horror, and then it quickly passed. Kind of like a warning for me to ‘Be Prepared’ (sounds like the Boy Scout’s motto). I am prepared now for anything and hope I can accept it graciously as I have tried to do with the past. I realized that food isn’t a comfort for me anymore and that I can direct my stress (i.e not inhaling ice cream, running for the cupboard for cookies or chips) by being at the gym. And reading books! (and 35 pounds have dropped off the past 9 months). The MS hasn’t affected my walking (THANK GOD) and I just suffer massive bouts of fatigue, with spasms in my legs that I don’t notice anymore. I am clumsy but I’ll take that over being wheelchair bound any day. Handling Jenni physically is hard, got to admit that. I have short term memory problems but my LONG TERM Memory is astounding. I can tell you things I remember from the time I was 3 years old. Names of people and places I had been and what friend I had done things with. It’s all there in a compact file in my brain. All in all, I feel like I have accomplished, so far, a good job at caring for my family and taking care of my sweet Jenni. As I said, she is like a perpetual preschooler, with a span of her mental functioning between a 3 year old and 6 year old – on a good day 🙂 . I don’t dwell on things and I have never asked ‘Why Me”, and I accept that this is how my life‘s road map was set to be. I’ve embraced it for all these years and I am glad that I have experienced things that don’t normally happen to just one person. Even the horribly bad parts, the parts I wish I could forget…. It’s a part of me. Oh there’s been A LOT of other events in this life of mine that I have left out- save that for another day and topic, but reflecting can be good for one’s psyche. I think I’m OK. I am OK.