Holiday…. this one is blue.

“A Holiday is a day designated as having special significance for which individuals, a government, or a religious group have deemed that observation is warranted. It is generally an official (more common) or unofficial observance of religious, national, or cultural significance, often accompanied by celebrations or festivities.” wikipedia

All of my life holidays have been a big deal. I am the youngest of a large, loving, fun family. Sundays alone were special occasions and often a day to gather and be together. Holidays were special. We would all participate in cooking and cleaning, talking, celebrating. There was always laughter, silliness, joy.

As the years went on, my family slowly started to find themselves relocating. First Robyn to Florida, then Chris to California, Jack to Maryland, Sue to Westchester, Mom & Dad to Florida, us to Georgia. The holidays windled a slowly. BUT… we always continued to  celebrate the way Mom & Dad had us do. Brian would have Christmas Eve, Suzanne Easter. When we moved to Georgia we fumbled to get our own traditions in place. We wanted our children to feel that holidays were special. I wanted my children to feel that they were surrounded by love, just like I felt growing up.

Sometimes we would drive down to Florida to be with Mom and Dad, and some of the siblings.  This year a bunch of them are together, but we can’t be, as Kevin just had surgery and we need to be here to allow him to heal.  We have made an effort to have a celebration with family and friends for every occasion that deems celebratory. Birthdays and Holidays. We gather our nearest and dearest. We laugh and smile and watch as our children soak in the love and the smiles as well. Thats what its all about.

 

This year is tough. Kevin has just had surgery. We felt that hosting a holiday would be too much this soon. So here we are, for the first time, wondering how to make a holiday special with out company. How do you make it a special day, when it will be just like every other day. Just the six of us.

Back in 2002 I had the worst Thanksgiving of my life. I was a week out from my poor prenatal diagnosis. I was floundering with finding joy or appreciation. But I had my baby, my first son who was only 9 months old and I knew in my heart that if we didn’t start tradition THEN, holidays wouldn’t be special EVER. So, we had my inlaws and we decided that on Thanksgiving we would put up our Christmas Tree. We Laughed as my nephews hung ornaments all over one side of the tree and my niece hung them all on one branch on the bottom. I left it that way. It was my happy every morning.

I have planned to make Grandma’s Christmas Cookies with the kids on Thursday. I will roast a chicken, mash some potatoes, bake some asparagus and make some protein packed Banana pudding (thanks Melissa).

 

At some point in the day I will drag out the tree and the decorations and I will put on my happy face and we will adorn our tree with love.

 

This is going to be a difficult holiday for me. I don’t know how to make it feel like a holiday with out being surrounded by more than just us. I just hope that it isn’t a disappointment to my kids.

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Thank you all

The outpouring of support and advice I received about my blog yesterday really helped.
We talked last night & I told him that he would find his own things that work for him, but vitamins and proper proteins are not areas that I will sit back and watch him be misinformed about.
I armed him with websites like Former Fat dudes Former Fat Dudes & Eggy The World According To Eggface and I invited him to learn from the best as to why a Flinstones wouldn’t work for him.
I have every intent to visit the surgeons office and ask questions, ask for the science behind their advice. Hell, one of the post op proteins is calogen based. So unacceptable for a newly post op body.
But, with out strong arming him, he seemed to understand that I have spent years researching and living this life, and maybe, just maybe, I have something to offer.
Again, thank you all!

Planning to start again…

How often in life do you get to plan a fresh start, with the knowledge of what lies ahead? In less than I week my husband will have his weight loss surgery. He will start his journey with is VSG. And he has the benefit of living with me and sharing my knowledge. While I’m excited to share my knowledge with him, I’m meeting resistance!!! WHAT? yep! I am! REALLY!

The man went to his pre-surgical meeting at the doctor’s office. He met with the surgeon’s team, the surgeon and their nutritionist. Now, I have to tell you, I love our surgeon. I do. I love the office and the support there. BUT… I do not agree with certain things that they teach. For instance… two flinstones vitamins a day? Really. Somebody please tell me how a child’s vitamin in a 400lb male body is sufficient? Now break it down to a post WLS body and tell me how it even begins to match up to what is needed. It doesn’t. Its dangerous information.  While I won’t pick apart every single aspect of what I disagree with, I will say that I have lived this life, done the research, met the experts and pride myself on the knowledge that I have. BUT… this man has gone to ONE meeting and is telling ME how things have to be.

I should sit back and not argue. I should let him take the lead in his own weight loss journey. I should let him find his own way. Right? Or… should I step in and beg him to listen?

I’m honestly a little befuddled. I don’t want to come across as strong arming the boy. I don’t want to come across as knowing better… but uh, I KNOW BETTER. Hello! I’ve struggled, I’ve lived it.. I am living it. YOU have MET my people! This man has been talked to about nutrition, about post WLS life, about just about everything… in a manner that has been casual and not about him. So why can’t he apply what he already knows to be true to his own life? UGH! I’m frustrated! I’m going to sick some of my folks on him!

So, ladies and gents….. your advice? Do I approach this as if I were approaching one of you? Do I tell him what I know to be true and tell him what I know is bad advice and what has been helpful? Do I STFU and let my friends do it? Or do I just let him fumble his way through the first few post op months on his own? (I wish I knew then what I knew now. He has the chance to have better knowledge than I did. Better insight. I wish I had a first hand perspective back then. I wish I knew.)

Momma and baby, a moment shared.

I found myself standing there, in the dark, dank silence of the garage, soaking in this moment…. she had her arms around my neck, her tiny head resting on my chest, her head below my chin, her legs draped over my arm, as I cradled her like I use to not so long ago. It was a quiet moment, a calm at the end of a stormy day. She was exhausted and so was I. It was just a moment, and I think we were both painfully aware of how incredibly rare and special that moment was. We were just still, deep breaths, strong grips, and silence.

It was only 3PM, the boys had not even gotten off of their bus yet, and here we were, 13 hours into the day from hell. We expected a rough day. We know that any day scheduled at the hospital will suck. We didn’t expect it to start at 4am, we didn’t expect the emergency room as an entrance. We didn’t expect the pain and anxiety.

Kailey is 8 years old. She is a tiny little bit of a girl. 30lbs and not even 3 feet tall. Kailey has a number of medical conditions, and I choose the term medically fragile when speaking of her, because above all else, the fact that her life is fragile is the most important fact I can stress. She is handicapped, she uses a wheelchair. She is a cardiac child, she has a mechanical mitral valve. She has a rare disorder called haywells syndrome, which amazingly enough is considered to be a random mutation. Any one of these things in and of itself would be bad enough, combine them together and well… you just don’t know what you get from day to day. We didn’t expect to see our girl celebrate her fifth birthday. She is now eight. At some point, we stopped projecting on the “but when” and decided to enjoy the “right now”. This way of life suits us well 99.9% of the time. Every .1% reality swoops in and gives us a really mean reality check.

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Kailey was scheduled to have a cystoscope to check out her bladder at 11:30 on Wednesday. At 4Am on Wednesday, Kailey came hysterical into my room, in pain. Her bladder was full, it hurt. Because of her spina bifida, she has a mitroffanoff to access her bladder. We catheterize her through her belly to get the urine out. We have been having a hard time lately, thus the reason for the appointment later in the day. At this point, I was unable to get her cathed. We tried and tried. Ultimately we ended up at the Emergency room.

Once at the ER, we were greeted by the lovely woman who works behind the desk at the CHILDREN’s HOSPITAL, who, when pulling up my daughter’s name stated “you’re scheduled for day surgery, you need to go upstairs.”. Here is how this goes.

Me “Yes, she is scheduled for surgery at 11:30. It is 8am, she is in pain and needs seen RIGHT NOW. The doctor’s service said to bring her into the ER”

her “So you’re coming from the doctor’s office?”

Me <GLARE, look at watch, GLARE> “Uh, no, I’m coming from home. This is not a child with behavioral issues, this is a child in agony. You have to admit her to the ER”

her “Oh, okay hold on.” .. picks up phone, dials and speaks “Uh, I have a mother here who refuses to take her child to registration, she is scheduled for day surgery, what should I do with her?”

At this point I walked to a nurse, explained again that the child who I have with me, that is screaming in agony, and demanding somebody help her RIGHT NOW… is not a child with behavioral issues, but rather a child who has not urinated in over 12 hours, and that the surgeon told us to come to the ER. The nurse went to the idiot at the desk and told her to check us in. There was a debate between the two. I took Kailey and sat down while the battle of wills went on over there. I had nothing to contribute. My heart was broken. My will was shattered. My baby was in so much pain.

Finally another nurse called us over to take K’s weight, temp and allergies. She gave her her bracelets, then told us to have a seat. Dumb struck I said “huh?” she said pointing to the empty chairs “Go there and sit, somebody will come and get you”. Uh, oh… well, okay.

Now, this is where I should let you all know that at our usual children’s hospital (CHOA has FOUR hospitals in a very close area all specializing in different areas. We usually go to Egleston, because of their cardiac unit) sees us walk into the ER, and Kailey’s chart must be flagged, because we have never, ever EVER so much as sat in a waiting area there. EVER. We have signed in, and been escorted straight back. Seas part for Kailey at that hospital. They are NO JOKE. DO NOT PASS GO! No no, straight to a room with a nice lil’ pulse ox, and telemetry monitor on you.

Being told to have to sit in an ER waiting room, while standard for the whole wide world, is not standard for Kailey, ever, especially when she is in THIS MUCH PAIN! I have never ever seen her hurt like this.

My advocate self, my take no crap self, my “don’t screw with my baby” momma bear self…. BROKE! I don’t know what happened to me, I don’t know who I was. I was completely swallowed whole by the words my daughter had spewed at me about wishing she could just die. I was traumatized by the world around me and how completely out of body this whole thing seemed. I was not myself and I was not doing my thing. So, Kailey stepped in.

Kailey started to yell at ‘She who sat behind the desk’. When I say yell, I mean… this child turned UGLY. She screamed “Im going to slam my head into the floor and MAKE MYSELF BLEED! Do YOU HEAR ME? I’m going to make myself bleed, so somebody HAS to come out here and HELP ME!” OMG, my 8yr old just had her very own, “terms of endearment moment” for herself! GOOD FOR HER, and yet, how sad that she knows that this is a way she should have to get herself help?

At this point I texted my sister, who called the doctor, who sent a nurse, who got us into the ER. From there the frenzy was fast and furious. There was the attempt to calm the child with versed. They tried to put it up her nose. She spewed it back at them. Not happening. The urology fellow came down and tried to get her catheterized. She failed. It was clear that this bladder wasn’t going to get tapped while this kid was awake. So, the next step was get an IV going. Once that was done morphine was given. The savage beast was calmed. She pointed her finger in a circular motion and said “THAT… that medicine makes me sleepy AND it makes me not care! I LIKE THAT ONE!” Yes honey, me too. As soon as Kailey got her “not care” on, she was shuffled up to the OR floor. Notes were taken, doctors were in and out, I just stood, answering questions, holding her hand, and feeling both apprehensive and relieved. At least she didn’t hurt, but soon I would have to leave her. That moment, that horrible moment when you kiss your child goodbye before any surgery, was looming closer and closer, and with it, the old “what if” started to whisper like thunder in my soul.

Then we were home and  there we stood, soaking in our quiet moment in the dark, dank garage. Both of us knowing. Both of us exhausted. A moment an 8 year old shouldn’t have to understand, but she does. A moment, like so many others we have had, but a harsh reminder… that I don’t take advantage of the normal moments nearly enough.

Kailey will have more surgery in the upcoming weeks. I will let you all know about it, as the time arrives.

Broke, Broke and Mad

My husband is our soul income. Work has been slow. I planned on finding a job as a waitress for weekends, but I have been a neurological mystery and am not fit to apply for a new job as I am right now.  We are broke, I am broke, and it is driving us mad. As in crazy. As in, we need income so that I can continue to see doctors and still be able to be home for my children, especially my medically fragile child. We need income to do these things so that we can stay sane.

BROKE: AKA lacking funds. AKA poor.

by_WelissaM

deviant art by WelissaM

I am broken (headaches and leg pain, cranky gut  issues, cranky ass husband syndrome), my laptop is broken (the connector to it is cracked.), this is driving me insane therefore I am mad.

this sucker is the bane of my existance

The insanity is running rampant as the hubby is home more often, and funds are low. My normal escape route is my laptop, which I apparently have an addiction to. Addicted to the laptop? But Michelle, you have an iphone and TWO desktops in the house. Surely you can connect?!

Yes, yes I CAN get connected. BUT… clearly I am spoiled. Sitting at a desk top is sort of claustrophobic. I feel like I’m in the corner. Wait, I sort of AM in a corner, facing a wall, with my back to the world. How did I live like this for so long prior to the laptop?

So, I am cranky, the husband is home and cranky, the majority of the children are in school. We can sit in the house and stare at each other, while anxious and annoyed or we could GO OUT. So, we go out. Where do we go? To stores, where we have little funds to purchase anything other than groceries. Which adds to the stress, which makes me want to eat, which makes me panic, which makes us go home. And when I get home? MY FREAKING LEGS ARE KILLING ME!

Wait! They make a pill for that!

we can just go numb, right?

Oh wait, my pill for that is codeine. I prefer to be cranky, weak and nervous.

I am admittedly a whiney mess. I have not talked to many people these last few days, because all that comes out of my brain is WHINE WHINE WHINE. This is not fun, nor is it who I am. But I am blogging about it, because it is me and this is my reality. <— those two sentences are an oximoron.

As always I will remind myself and you, that there is a bright side. Kailey didn’t get admitted to the hospital on Saturday. Her brain is fine, although achey. My children are fed, happy and bright. I have a roof over my head that is much easier to keep afloat than the old house would have been in similar times.

My husband being home has its upside. We get to spend some time together, discussing options, forming plans of action, bonding. He will be having his WLS soon, and we are able to get a little more in depth when discussing that, because I’m harping on him about it. Because I’m bored. But these things need said and discussed, so.. bright side… they have been.

VSGMOM confesses to being absolutely bat shit crazy. Thanks.

huh?

 

And Poof, you are reminded

This past week I posted two “vlogs” about my daughter Kailey and her journey through life and defeating the odds.

I think I mentioned that we try to live a “normal” life and we do our best to treat her like a healthy, normal kid. But lurking in the background is this dread, that today could be the day that everything changes.

Yesterday Kailey spent the afternoon outside playing. She came in for dinner, then rushed back out to her friends. She didn’t come in with her siblings till nearly 8:30pm. Far past bedtime in our house. My husband decided it was a beautiful afternoon & they should enjoy it.

This morning Kailey woke up with a horrid migraine, complete with vomiting, light sensitivity, noise sensitivity & a new one for her… Smell… The kids cereal made her nauseous and she wasn’t even at the table.

I gave given her Tylenol, a bottle of Coke to sip on, pillows and a blanket. She doesn’t want to be alone in a room where it will be quieter and darker. She says she is afraid she will have a seizure.

Our dog Ruby was very agitated this morning and woke me up. I thought she needed to go out, but she wanted to be with Kailey. When Kailey came downstairs Ruby settled onto the love seat with her. The last time Kailey had a seizure, Ruby didn’t leave her side for days.

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I sit here now, questioning myself. Do I take her to the hospital? Is this just another headache? Is this more? Do I alert the family? Do I call my husband home from work?

I am reminded that that dark fear that lingers in the background of our “normal” life, grips me by the throat from time to time & I know that our normal is just really unfair.

I went home part II

So, I headed off to Long Island and arrived at my friend Christina’s home by late morning.
Christina is my best friend, my soul sister. We have a bond like none other in my life. Christina and her husband Huge are incredible friends and their children are adored by me, as if they were my own. I know each one’s personality as well as I know my own kid’s personalities. Best yet is that their kids and my kids fall with in years, months, weeks of each other age wise. They fit like a puzzle, never a missing link.

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Walking into Chris & Hugh’s yard was like coming home in and of itself. Filled with ghosts of babies crawling, boys peeing in the yard, potty training, barbecues, beer, good times.

I stole away a bit of time here and there. I drove by my family home, down the block I played on, around the block to check out the park, the Matthew’s house and wondered if the yards were still connected like they were when we were kids. I never had to walk around the block. Loving neighbors had a gate between yards, to keep us lil people safe & in view.

We spent time with my brother Brian, my nephew John, and sister in law Tracy. Sometimes you take for granted that family is family & they will always be there. We have not seen nearly enough of them over the years, and I didn’t know how much I
Missed them till I was there.
My kids were water rats, I wore a bathing suit and was water logged myself. I soaked up the fact that Brian is a one man show who can entertain 7 children with out trying. I also can’t thank him enough for having my clan and Christina’s clan, so I was able to enjoy the best of both worlds.

I drove through Lindenhurst and Wellwoid ave broke my heart. Where is Carvel? The flower Shop? How is Friendly’s a friggin 7-11? Where is my town? My tween years were spent there. My first job, first crush, and the sense if freedom I had by merely being permitted to walk there to meet up with friends.
Amazingly, a trip to NY did not awaken my sense of food nostalgia. Well, other than Linzer Tarts. I really didn’t do the food tours that most former NYers do when they go home. No bagels for me (but for the kids) Brian got them pizza too. No deli heros, no Italian pastries, I even avoided the Italian butcher. No Chinese, no Zorns, no zeppolis.
Crazy right? But, this is a non scale victory. Before surgery I would have binged for a week straight.
The ghosts of my childhood, my teens, my early parenting years are all around Long Island. I was homesick for this place that will always be my home.
Packing up my babies and heading back to Georgia was physically painful. My heart broke. I miss my people. Christina and I belong close by. It’s a strong connection and it’s resilient, but 900 miles may as well be different continents. I miss my brother, my family. I even got to see my cousin Jamie and her beautiful boy Hudson. Jamie and I were polar opposite as kids. She out going and independent, me a momma’s girl. Now, we’re two strong headed, crazy momma’s ourselves & my kids are thrilled to know that there are more cousins to meet.
Next year we’ll tackle this trip earlier. We will make time for the beach, for a meeting with Scheiner Family, & hopefully the hubby will come along to spend some man time with Hugh & Brian.

My NY peeps, I love you. I’m sorry if I missed you. I was ghost hunting, finding pieces of myself in memories long gone.

I went home….Part I

As my previous post stated, I traveled from Georgia to New York with my kids. I use to live in NY. It is where I was born and raised. Some of my family is there, my best friend is there, my past is there and its always going to be home to this Yankee chick.

When we first arrived we drove past Long Island, past Westhester and toward Poughkeepsie NY where we met up with my friend Hope and her clan Olen, Reid, Eliya and Lincoln. Hope and I became friends back in the days of my pregnancy with Kailey while on a baby board for February 2002 babies. Olen and Kevin are the same age, about a week apart. While we have not seen each other in years (actually 4 children or so ago), we have always kept in touch. Hope and the Feb mommas (both 02 and 03) were my life line, when I had little hope left in the world. It was a calm, comfortable meeting while the kids all ran a muck around Chuck E Cheese! Love you Hopey!
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Later that afternoon we traveled another hour south east and arrived at my sister Suzanne’s house. The kids hopped out of the car and almost immediately made friends in the neighborhood, and began playing outside. I know I have made mention of this before, but I am so proud of the fact that my kid play outside! They are not drone children, attached to electronics and sitting on their butts. They are active and happy and living the type of childhood that I had, and that many kids their age only see on TV!

Suzanne came home and we were instantly comfy, entertained, fed and loved. We set the kids up in one room, and shuffled their tired little butts to bed, with hopes of having a nice quiet sisterly night. There were whining kids, but the night still ended up with sisters, sushi and martinis. Ahhh… creature comforts!

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The following morning we herded the children, including my beautiful niece Kristin (Krissi, as she prefers to be called, will never cross my lips), who happens to be a 25 yr old child in my book. Yes, herded them all into the car and off we went for a trip to the Bronx Zoo. Face painting, animals, lunch, rides, butterfly gardens and a 4D movie later, we headed to the store to gather some things for dinner. Suzanne and I walked into the grocery store as well as a foodie boutique looking like this:

Embrace the day, love your inner child

There were small debates as to how sane it was to walk into such places, in my sister’s town, looking like we just escaped the circus, but alas, we embraced the inner child and said “fuck it!”! We all know, very well, that you only live life once! These are the moments to remember, and I’m pretty sure the kids as well as a few locals will remember us walking into Susan Lawrence looking like this!

Sunday arrived and we went to a beautiful park on the Hudson River. Suzanne packed us a great picnic lunch, and we instantly soaked up the day with smiles, and laughter, kids looking out over the water, and everybody doing their best to climb a tree!

On the Hudson

When we left the park, we headed home to have a lovely dinner with Kristin and Lamar. Lamar was introduced to the children, and he didn’t run in fear, as they climbed on him like he was a human tree. They adored him, as do the rest of us.  I promised Lamar no photos of him on facebook. This is not facebook. Here is the mystery man being adored!

Sunday was my last night at Suzanne’s. Monday morning we headed to Christina’s in Long Island. I will write more about that leg of the journey later.

To end this post I want to point out that 140 + pounds ago, I would have struggled with a trip like this. I would have struggled to keep up, have energy, be comfortable, and the joy would have been overshadowed by the unhappiness. That unhappiness was captured in many photos over the years. These photos, this time around, do not shadow anything. There is joy, there is peace, there is fun, and there is pride.Most of all, there is love. And its quite clear.

My largest non scale victory is simply the fact that surgery helped me to achieve a quality of life that obesity robbed me of.

 

Life is good when…

Today I had tremendous non scale victories. I wore a bathing suit, spent the day out doors, in July heat and humidity and was comfortable. I didn’t seek the shelter of the house. I enjoyed my family and my friends, with out worrying about what I looked like or what others thought of me. BUT… MOST OF ALL… I played with my kids, made memories and was that person that I had hoped surgery would help me to be. I was a mom who was able to not only keep up with her kids, but who was able to enjoy them too.

Life is good. I am blessed. These are just a few of my many blessings.

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