On The Same Wave Length

I'm not sure why, but I keep wanting to apologize...for long posts and no poetry. It's coming, soon. Not now because an amazing thing happened to me on the way to grandma's house the gym last Thursday. I left my red cape with powers of invisibility at home so I could hit the doctor's office, run errands and swim. Not sure you are aware that my van died two months ago. Hubby and I are sharing his, and let's just say the fight over the radio drives me bonkers, but when it's on NPR, National Public Radio (in case clueless secluded Appalachian peoples are reading this) I can deal with it.

After calling everyone to tell them about the diabetes consultation with my doctor I turned up the radio. I heard Brian Naylor guest host of Talk of the Nation begin to introduce a few people who would discuss and take phone calls for 'Channeling Dragons To Parent Terminally Ill Kids'. My ears went up like a German Shepard (go listen after you read my post). Oh how I wanted to call in, but I was on Route 1, and if you live in Jersey, driving in the madness of afternoon traffic is not safe, even with your headset on.

There is so much I want to say about this. I often want to talk more about being a mom to a child with a chronic or terminally ill disease. But to many it's too painful. Not me. There is a need to speak up about what I went through. It helps the healing process. I lost clients over this illness and her eventual death. Yes, many of my friends and clients dropped off the face of the earth after six months to a year. It's too close to home for them. So they avoid it.

How did my adventure begin with Anelisa in the first place? I like Emily Rapp on NPR found myself pregnant and making life plans. Being pregnant is a wonder in itself. You anticipate the future with much more emotion. I had the pregnancy and labor books memorized. I knew when I efaced, was nesting, although labor pains were like having cramps, a little too easy at the most, I had it all down. Her father and I blew off a pot luck dinner at church the night before and darted off to the emergency room. I was going to have a baby!

Thirty hours later, I was told the baby was in fetal distress, so a C-section was in order. Okay, knock that one off of my list- no natural birth, this time around. I unfortunately they put me to sleep, but awoke to the announcement of a girl. Not the boy the doctor told me. She was barely six pounds. We named her Anelisa Diane Dillion. I could deal with a girl. She was a clock work baby girl for the next fourteen years. Waking up for feedings every three or four hours, sleeping on my chest, no loud crying, just purring like a kitten, hardly any complaining, ahhh. Wait, I forgot something. Let's go back to the delivery.

My chosen pediatrician came on the second day and said the nurses heard a murmur. A what? A blast from the past. See I was born with a murmur. Actually a VSD, Ventricular Septical Defect, or a hole in the heart. They called us 'Blue Babies' back in the sixties. The minute you begin to breath on your own the heart begins to show stress and lack of oxygen. I was three months premature, and was in the hospital for three months. Growing up I heard how sickly I was, and my lungs were never really strong. Asthma and all that. I out grew mine, except for an irregular heart beat, but they watch me carefully.

The pediatrician told me they had to whisk her away to another hospital, Children's Medical Center Dallas, so they could do a catheter. You cannot really see inside the heart without this they told me. It tells them more details about the problem. Medicine had come a long way from my mother's agonies.

During this experience I remember feeling...but I was a new and confused mother. What had I done to deserve this. My whole dream of being a mom was kind of shattered. You feel so helpless at times. When they are suffering you want so badly to change places with them.

Fortunately I had a couple friend who were both in medicine. Matter of fact the wife worked with the heart surgeon, Dr. Nikado (since retired) who went on to do Ane's first and five altogether Blalock Shunt surgeries. They help explain things all along the way. See Anelisa had five defects, but she was too small to fix anything. Actually when she was one year old, they told me she could never be fixed. The bigger you grow and the problems aren't fixed, the body begins to deteriorate. I could see in the couples eyes they knew her fate.

Down the road her case was looked at by the father of heart surgery and a panel of the best in Chicago. They could do nothing, not even a transplant, because it would mean a heart-lung, and they are barely doing it on monkey's. I've learned more about medicine than I ever cared to know. I still can spout out that stuff to medical professions if it comes up. And it did a few years ago. Two pediatric cardiologists sitting next to hubby and I at a wine and food pairing said they still hadn't perfected surgeries to help children like my Ane (Ah-knee). Sigh.

We had no idea how long she would live. I walked out of that doctor's office in shock that first year. Hadn't medicine come far enough they could fix her? No they hadn't, but there was still hope. Hope. A pretty name for a girl don't you think, but not powerful enough to heal my baby. I fell to my knees that day in my own agony. My mother spiraled down into her mental illness abyss when she heard the news. Friends, they offered up "I will pray for you guys", "Surely they will find a cure", and as Emily says on the radio "I can't imagine the pain you are going through". Or can they?

It's something we all never want to feel. When I got pregnant, which was soon, after Anelisa, I was so scared. because I lost three pregnancies before my first live birth, what if I lose this one, or it might be sick too. Could I handle another? Life begun to suck, that is until I brought her home. Seeing her in that ICU unit day after day, hooked up to leads, wires, and tubes was awful. It sucked big time.  My first photo to show friends and clients was me holding her hooked up like Frankenstein. What could people say? Do not be afraid. I swallowed the tears and gave her the best life she deserved. She was a princess to everyone who had the chance to meet her.

When the fog lifted it had been four years since she left us eleven years ago. I often think if I had not kept so much of my feelings pent up trying to be strong, I might have survived the grief period better. See I never went to support groups. I kept my composure when I spoke about her, my chin up. You have no choice since you can't spend your time crying in the open. On the outside she looked eighty percent normal so it did not come up with strangers. Blue lips, nails and pale skin. Oh and extremities that were long and lanky, like we were starving her, but she ate, She ate well. So most people, even friends and family thought she would survive.

Listening to Emily Rapp on NPR brought a thought to mind. I should encourage others like us to attend support groups. To find others like us, and not hold back the tears. We have every right to cry. I will never see my only daughter attend her first dance, graduate from school, or wear a wedding gown. Not hear about her first kiss, although we often giggled about boys. She could not understand how I like a boy with dark hair and she like blondes. I used to I told her, but you cannot predict who you fall in love with.

Her last trek outside was to hunt down the cute boys in our new neighborhood, but she was only gone for five minutes. I encouraged her to take her motor scooter so she wouldn't be so tired, but she cried and said she felt ugly, and wanted to know why she couldn't be like everyone else. You can't predict your fate in life I told her. Hers was a purpose beyond my motherly concepts. She lay against me and I soaked in every moment like that until she was gone.

I am glad NPR chose to host that radio program. You can go and listen to Emily Rapp on NPR. Educate yourself and imagine what it is like to be a mother of a terminally ill child. You are missing out on the most wonderful experience we have been given. Death wonderful? No, but it's an eye opener. My son Aaron has made up for many things I will never have with Anelisa, but he is a boy. They have other issues to hurdle. He hugs me and tells me he loves me, so I am glad I had another child so soon after her.  One day when he becomes a father, we will be on the same wave length. His pain of loss is a whole other post, and maybe he will share here one day.

My client Puneeta and I still are close since her daughter Anjuli passed three years ago. I am still waiting for her to have another baby for me to help with (smile). She is afraid. We talked about the NPR show, and she is so fresh into the grieving period that she does not want to go listen to others talk about the pain and loss. She will one day. She will help another like I helped her. We also will be on the same wavelength. Till then I hope there will be another chance to meet or help another mom, and I can share in the love these children bring into our lives.

Emily Rapp has her own blog for which she said has saved her (I feel the same way Emily!) Little Seal, Ronan's Blog. It is a great insight into what others have to say. The comments are often as good or better than the posts.  One of her friends Jennifer mentions watching him so Emily can do some things, and how she is watching 'a sweet dying baby'. Truth is can be such an eye opener.

On The Edge Connections

As usual I woke up around 4:30 AM, and began reading with the television on in the back ground. I love documentaries! I am a people person, so any of them that focus on the human dynamic catches my attention. I often find connections which makes sense of my own past. Hmm, maybe there is a documentary on this. 'Picture This' follows fashion model Sara Ziff as she chronicles the life of a model. My opinion is she does it to prove that models are not just dumb stiff bodies.

In doing so models are interviewed on the issues of sex exploitation and being degraded by the industry. One model mentions a 'famous creepy photographer who makes the whole photography session sexual'. But if you want to get in or be noticed models have put up with his antics. Many have complained publicly. They don't mention names, but I Googled 'famous photographer who uses sex with models' and only one name popped up. He is all over the web. You know me, sexual predators get my goat. Bahhhhhh.

In reading many pieces about this man I stumbled upon something which sparked a memory. I cannot get right down to it without writing it out, so bare with me. I might make sense, and I might not.

“It was comedy,” said Mr. Richardson. “We’d be in Miami shooting beauty pictures for some magazine, and my dad would be yelling at the editor: ‘Terry’s going to do what he wants-and if you’re going to get in the way, we’re going to get on a plane and go home!’ And we were just so broke, I was like, ‘ Noooo , we’re in a hotel ! It’s free food and free drinks and I want to stay!’ Dad was really into tantrums and trying to emotionally devastate people. The 60′s was a different time. You could get away with these incredible scenes.”


For a spell, his dad was living in Terry’s studio apartment. “And I would just go to sleep on people’s couches every night, because I just couldn’t handle sleeping in a bed with my dad every night,” Mr. Richardson said. “I’d come home and he’d be wearing my clothes and hanging out with my friends.”


- 'Terry Richardson's Dark Room' New York Observer, Phoebe Eaton, 2004

After reading this article, especially this section I made a connection. A mom and my life connection. During my first marriage, we were renting a portion of a house in a prestigious part of town. Life was good for the early eighties. Of course now I see it was all a bad phase of the decent into abuse and a wild party life. An escape from my own family upheavals.

Back when my ex cheated on me one too many times. I know how can once not be enough? I just did not know about everything he was doing until I returned from a trip visiting friends at Baylor. It was finished, he was gone, his stuff was on the curb and then my mom calls. If I had access to a video camera I am sure the out takes would be pretty hysterical.

I invited her to come visit me. She was crying, like always, saying "this was it, she was leaving my dad for good." I knew she never would, but felt she needed a sort of vaca from the house. I hated that house, so if I could leave and feel better, than it would work for mom.

A week goes by, yeah a week, and I come home for lunch after complaining to my friends she was still there, to find the house full of firemen. She had my jewelry on, was dressed to the tee and had made lunch and coffee for them all. I was introduced as her 'single and available' daughter. I rolled my eyes. Inside I was screaming, but outside I let it go.

Is this the right time to begin screaming and throw her out I thought to myself. My roommate came home and was surprised by the scene as well. I had thought this girl was fantastic. She was hip and introduced me to all the right people. It was all part of the eighties scene really. Yes, really. I was going to the Stark Club, hanging with wealthy people who recognized my talent,  had gotten me on stage, but my mom was a mess. My roommate proceeds to tell me my mom has told the world she has won the Publishers Clearing House Sweepstakes. Yeah.

But she also began telling everyone someone was watching her and the light bulbs had cameras in them. I never said this story had a good ending. I am not sure why I had not seen the signs. Growing up she suffered from horrible depression and checked out often. Was it the chaos of my upbringing that made me shut out the signs of craziness? I am sure it was now. I was running, she was slowly descending into madness. I might be making light of it now, but when I read about dysfunctional families like Terry Richardson, I can see why he is a mess.

My mother just wanted to be noticed. She spent her whole life in the shadow of others and I saw the web of lies and stories she created, not to mention the hypochondria, it was her way of trying to make a life she never got to have. I see how Mr. Richardson's father in a sense was doing the same thing. My mom just wanted to have what I had. Actually what I had at that time was only youth, and what a waste of youth it was. Thankfully I eventually recognized all the fuel being thrown into my fire of life needed to be extinguished. Before everything blew up in my face.

My mother sadly refused to get the help from medical professionals, until she fell, just after my daughter passed away. She remained locked up, I blame my father and his back woods ignorance for this one, in that dark house. It was too late by then, but I hoped for a few weeks she really enjoyed herself. At my rented house of course. As far as Mr. Richardson is concerned, and solely my opinion, he refers to himself as a caricature, and obviously feels his actions toward other human beings are perfectly normal.

Deeper connection made, at least in my mind.  Some people just never see the chaos of their past, and how it trickles down into their own personal choices. They never wake up, or maybe they know what is going on, but make a choice to call it their own while eyes wide shut.

I read that creative people feel keeping themselves on some kind of edge keeps the juices flowing. Always looking for that next high. Are they just ringmasters looking for an audience. No connection in that for me. Well, maybe a tiny one.

Oh, why was the fire department called when my mom came for a visit? She was cooking me lunch and caught our high tech stove on fire. The smoke alarm went off and she called 911.

Wish Me Luck

Actually it's my own fault. I had a physical before going to Korea and did not get my report in the mail like I usually do, so I figured it was because they screwed up my insurance information and needed more time. Which is a whole other story.

When I returned, I opened the report to see once again my blood sugar was 'elevated'. Something I have been seeing for the past four years. 99 is the normal high range, but they did lower it from 123 or so two years ago. They say because people are not taking diabetes seriously and more people have it nowadays.

Silly me, I went into the doctor's office and brought it up. I said "Well it's not like I have diabetes, just because my levels are a bit elevated". They have been 114, and consistent the past four years. I did not notice the number was 173 on this report. Ooops, my bad. He said "Yes, you have diabetes." His options were try once again eating a well balanced meal, see a dietician, exercise, and attend diabetes workshops. Or...all of this and take an insulin pill.

I opted for the pill and the rest, but made an appointment to be retested. Why? Because in the back of my mind I think I ate something due to my insomnia, after midnight (the fasting cut off time for testing). So I have eaten like a good egg since Friday (seeing the doctor) and have been taking my Metformin. I go today to get retested. No eating after midnight, I was a good patient. However...

I have spoken with two of my nurse friends in Dallas. I have been experiencing repeated hunger, sleepiness, and shaking throughout the day. I have been warned it could be low blood sugar, that I should not be taking this medication.

One of the nurse friends, Joyce said she was surprised he did not tell me to monitor my sugar levels. She is mailing me a sugar level tester. Her boss, a doctor gives them out for free. That will help me see what is going on after meals.

I will talk about it today with the doctor and report back. I am hoping I just majorly screwed myself by eating after midnight. I don't have diabetes and have another chance at changing my diet, meaning eating breakfast and not after seven in the evening. Also, I made the choice to give up alcohol altogether. Its been a long time coming. I am getting older and never really was a party animal. I did not drink until I was over thirty, as I have said before.

I have been saddened to tell hubby 'no more wine' with our meals. He loves his wine, but he also knows he has gained weight from the alcohol with meals. He lost weight from all of our walking and his food poisoning in Korea, we both have. I would rather be able to eat the foods I love than drink calorie laden and sugary alcohol that has no bearing on my happiness. I used it to numb the pain of Anelisa's death before moving to New Jersey, but now it is time to go back to the non-drinker I was before she got very ill sixteen years ago.

A chef who loves cooking and pairing wine with food giving up that passion? I had already begun a no-scotch regime for the past year, so what is a little wine. Scotch is the real culprit in my diet. Sugar filled foods too. My sweet tooth has to go.

Wish me luck on the testing...I have not wanted to ever hear the words "You are a diabetic" like my mom did all those years ago. Because I know how hard it will be to change on a dime, rather than given a chance to make changes at my own pace.

(Photo above- I found this pic in my files thanks to my friend Donna. Me and my son Aaron when I had my Dallas catering company, and working as a chef consultant for assisted living facilities, and was a size fourteen/sixteen. Sure I had a belly already, but I was more fit than I am now. My son had a chili bowl cut, and was around fourteen, he is adorable!)

What Do You See...

...first thing in the morning?

Lately I am waking up around five o'clock in the morning. In the past I might lay there and eventually go back to sleep, but not since before Korea. The doctor told me to get up and not lay there. I simply would take a nap later in the day if time afforded the luxury.

I leave hubby to his dreams, but lately he is awake as well. My routine is to go downstairs, get on the internet; read, check Facebook, and do some writing. Then at some point hubby comes downstairs; we joke about being on Korea time, but really he has not felt well and we both know it will pan out for him. He cannot go on without sleep. If he does it will mean mountain dew's and falling asleep toward the end of work.

Not good either way. I on the other hand am making due with no caffeine, and am on my way to the gym again. Again? I have always enjoyed getting up before others and going for a swim. A routine I took on the past six years since we moved to New Jersey. I just back slide from time to time.

In this morning routine I am enjoying watching the sun come up. Out my dining room window is a burst of reds and gray, bouncing off cloudy skies this time of year. The trees have begun to lose all of their leaves, so it makes for a 'Headless Horseman' kind of scene. I love it. My own private creepy view in which I can add my own characters. Silly I know, but fun to use our imagination.

I also wake up to an email about my new website, Z-composition. Things have gotten behind, but Brooke is finally making progress. We are getting excited. I am aiming for the new launch date of January 1st. Full steam ahead.

What else is new? I have been thinking about an ex-husband lately. and wondering about his family. I kept up with them when the kids were young. I would stop in or call his grandmother in Texas. They have a ranch there and were always a joy to be around. He (the ex) had his problems, but the family made me feel loved.

I stumbled upon a website mentioning the family ranch. Their phone number was still the same (as the now deceased grandparents). Should I call? Me being me, I did. The father answered and we had pleasantries. Then I spoke with his mom, and it was as if we had never lost contact. She asked if I had heard the ex was deceased, I said yes, I had heard some small thing. I knew more than I let on, but felt it was rude to discuss him. There are still mixed feelings. But it was good to hear the ex's son was doing well. Unscathed from any abuse of his mom from the ex during his childhood.

Life goes own right? The sun comes up each day with brilliance. I wake up and get to witness the glory of it all. I miss Anelisa in all the autumn color, as this was her favorite time of year. The poetic side of it all just sits, waiting for me to put the words down onto paper...but I will not go there. Sometimes you just have to let sleeping dogs lie.

Peace to you all out there under the same sunrise. May you find the beauty of it all, even if it doesn't always make sense. Don't let things go unsaid. In your hearts at least. Do what you have to do to make peace with your world, and have no regrets. The higher power out there wants us to find peace. I know it.

(The author owned photo above was taken several years ago this time of the year. Pretty right? The Finger Lakes area to be exact- E. Stelling)