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.

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.)

Sick Kids + Insurance = Its not all taken care of….

I have never taken the time to write about the financial aspect of having a sick child. Its a personal thing, its a difficult topic, its a sensitive issue for many people. That all being said, I have watched friends struggle, my family has struggled, and the vast majority of the public assumes that either insurance covers everything or the government steps in to help.

The majority of middle class families who have a sick child have a primary insurance company. Primary insurance covers (for us) 80% of medical procedures with in network doctors. We have a maximum of $3000 out of pocket. After that is covered, insurance covers all procedures. They do not however, cover all medications. Our monthly pharmacy bill alone is upwards of $300 a month. Laboratory Billing is separate,  Imaging billing is separate, medical equipment is separate.. and so on and so forth.

We do not qualify for SSI because my husband, our sole provider makes too much money for a family of six. Applying for a deeming waiver for medicaid has proved to be exhausting and loathsome, and difficult. We have been denied. I need to reapply because the time in which I had to appeal has expired. I let the ball drop. What ever.

Why am I telling YOU this? Well… heres the thing…. I have a friend, who has a sick child. This friend holds fund raisers to raise funds for his family and other families like his. Every few months they hold a small comedy show or event, something fun, a nigh out, nothing asking for large donations. Just something that can happen with in the most basic of circumstances.

It is my observation that when a child is initially diagnosed with an illness, a family is showered with support from well meaning friends and family. They are loved, and people are eager to show it.  But childhood illnesses such as leukemia, take YEARS to fight. And eventually the child who is fighting for their life, becomes well, not so sensational. And people go back to their every day normal, while the sick child’s family struggles to hold on to any semblance of normal that they can hold on to.

Finances dictate normalcy to a child. Siblings want to play sports, take dance classes, and when physically strong enough, the sick child would like to do the normal things other kids his age are doing as well. Do you know how much it sucks to tell your kid “Sorry honey, you can’t play basketball this year because we just can’t afford it.”? I do. It sucks. A lot.

So, my friend Tommy saw a way to gather friends, gather support, help his family and other families like his own. He has asked people to come out and show their support. And well… 2 years into his son’s battle with leukemia, he is seeing the support slowly trickle away. He is disheartened and disenchanted. It breaks my heart to see another parent feel jaded by the outside world. I chose to distance myself from the world when I had Kailey. Tommy chose to put his faith in his friends and his community when his son was diagnosed with leukemia. I know that Danny has had tremendous support so far, but he deserves support all the way through. He is a little titan! His story should be one with an ending as big as its beginning! Danny deserves an entourage the size of a stadium.

So, I’m writing to remind you, that we, the parents of sick kids, we rely on you… our friends, our family, our community… to continue to show your support, year after year… because the battle continues long after the initial diagnoses. The battle continues and gets worse, and sometimes gets better… but it continues and we are not “so strong”, we are along for the ride. Our children are strong, our children are amazing, we, the parents… rely on you the outside world to lend us strength… because sometimes we are running on empty, and facing tomorrow seems impossible.

Donations can be made to :

Friends of Danny

10 Highland Ave

West Islip, NY 11795

 

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.

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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.

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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900 miles

On Wednesday, I headed out with the kids for a road trip to NY.
We stopped in Raleigh where we got the chance to visit some friends & spend some time with my family there. Thursday we drove through to Maryland, and I was grateful for the chance to get off of the road and into a bed.
On Friday we headed out, and drove up to NY, where again, we were delighted to spend time with Friends and then more time with family!
My sister had us at her place for a few days, bless her heart! I think the whining will be missed terribly. But she is a great sport, and didn’t pull her hair out or stick anything into her ears to drown out the noise.
Over the weekend we went to the zoo, had a picnic on the Hudson River, spent quality time with my Sis and my niece and soaked up the love.
Today I left Suzanne and headed to Long Island.
I am writing this from the basement of my best friend’s home. My children are sprawled out, 2 on a pull out couch, 1 on an air mattress, 1 on the chaise lounge of the sofa. The day was filled with laughter and screams, water slides, pools and swings. Sun, coffee, juice boxes, and the beauty that is our children picking up exactly where they left off last time they saw each other.
There was no shyness, no awkward moments. Just 7 kids who have known each other forever, being their individual selves, caution to the wind, because when you are with friends who love you, you have confidence that they are just as silly as you are.

While I miss my husband and my Ruby, I have driven 900 miles from my house in Ga, to finally be home, where my heart will always be. Long Island is in my blood. These are my people. There is a contentment here that I have not felt in years.

Tomorrow I will see my brother, sister in law & nephew. Wednesday I hope to get to the ocean. Thursday I start the treck back to the south.

900 miles. What on earth were we thinking? I’m going to soak in as much as I can, my heart is light, smile on my face, babies are delighted, family is loved, best pal, soul sister makes the world feel balanced. Some things do not change.
I pray that these kids, as they get older, appreciate the ties that bind. Surely they have them, and it’s a beautiful thing to see.

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Bari-Family

Once upon a time, a sort of big guy dated a sort of chubby girl, they got married, had babies and got obese together. The now obese wife decided that life was meant for living, and decided to have bariatric surgery to help her reach her goals of living.

A few months later, the obese wife, became a smaller version of her former self, and resembled her younger self more and more. The obese husband struggled with his emotions, trying to deal with the changes that were happening before his very eyes.

Eventually the obese husband discussed the possibilities of bariatric surgery for himself, first with his doctor then with his wife. While apprehensive to under go any form of surgery, he realized that at the rate he was going, he wouldn’t see his children graduate high school. Having lost his own father, much earlier than he should have, he decided to go forward with his plan to have weight loss surgery.

Today the obese husband has been under doctor’s care for  5 months. He went for all of his pre surgical testing, his surgeon consult and his nutritionist appointment. Today, it all became real for him, as he left the doctor’s office and the doctor said “next time I see you will be on the day of your surgery”

One month from now, he will hand in the last of his paper work and it will be submitted to the insurance company. With in the next few months we will be a bariatric family. Hopefully the changes we make in our lives now, will keep our children from struggling with obesity and poor eating habits and behaviors.

Up to this point, I was not sure he would go forward with this. In the past he has lost weight on his own.

When Kailey was born, the man was skinny!

As I have written previously, having a child with medical issues certainly contributed to both of our stress eating tendencies. It is very easy to fill the “helpless” feelings with food. I am hopeful that today marks the beginning of the changes my husband needs to live a happy life.

We're on our way... together.

 

Confessions of a bariatric foodie

First off, let me point out my blog roll and the fact that there is a WHOLE blog dedicated to being a bariatric foodie. So yeah… stealing an idea here, but simply because I am inspired and frankly, I’m a self declared foodie.

I come from a family of foodies. My family has some of its very best moments in the kitchen, creating meals for each other. My dad, my sisters, my brothers, my husband, and even me… we’re all quite adveturous, and we all have amazing palates. My husband of course is beyond a foodie. He is a chef, a graduate of the Culinary Institute of America. His skills have been put to good use through the years, my family has no problem using him to their full advantage.

Having had weight loss surgery did not alter my taste buds. It has altered the amount of food I can consume, it has even made me apathetic toward food on occasion, but my love of new things and my palate has not changed!

On Saturday we went over to Whole Foods and we stumbled upon a tasting of peach infused balsamic vinegar. They served it over watermelon, with a bit of fresh basil. They had me at “fresh basil” so I went ahead and gave it a try. OH MY, holy peach loveliness! I am not a peach fan. Nope, just not. But this… the heavens open, a choir sang, and my brain immediately went to the endless possibilities that this product could create.

We had friends coming over for dinner, and Saturday night friends + dinner is usually finger foods. Delicious divine finger foods, made with love!

Our favorite stand by is the grilled Angus rib-eye with caramelized onions and horseradish sauce, served on a garlic Parmesan crustini. YUM!

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Then, Kevin made an amazing chicken salad with fresh grapes, pecans, and of course the peach infused balsamic vinegar. It was amazing! Sadly, there is no awesome way to capture chicken salad. Its just sort of ugly, but here it is anyway:

Chicken salad

Finally tonight, the 4th of July, we wanted simple and delicious. There is nothing as wonderful as Caprisi Salad. NOTHING! Some fresh tomatoes, fresh basil, fresh mozzarella cheese and a drizzle of some reduced peach balsamic vinegar:

And while confessing about the glorious things we created this weekend, here is a photo of the mocha chocolate chip cake I made for our friend’s 4th of July party, it was a hit:

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