Tag Archive | kids

A Sliver of Light

Jun2

Sometimes, when the darkness comes and you feel your world crumbling down around you, a sliver of light makes its way through the cracks of your life.  The past month has been a huge struggle for me and my husband.  Not only has he seemed to have gotten noticeably worse, but financial burdens have become overwhelming, our kids have had some personal struggles, and the pressure to remain strong and keep life “normal” for everyone has become harder for me.  Then, on May 18th, my husband was brought to the ER by ambulance once again.  He had been vomiting on and off for days, thought he was better, and then started all over again.  We thought he was septic again.  This was not a new thing for us…we had been down this road several times before.

But, this time was different.  He went to his usual hospital, where they knew him and his history.  They discovered he wasn’t septic, but possibly had a blocked intestine from his tumor growing and squeezing it shut.  A doctor came into the room and said that she felt he would be better off going a few blocks away to Smilow Cancer Hospital.  She felt he would be able to get tests over the weekend, and that there may be doctors there with more expertise.  So, we agreed and he was transferred.  It was one of the best decisions we’ve ever made regarding his treatment in the last 11 years.  It changed the trajectory of his treatment and gave us some hope we haven’t had in years.

Dave stayed in the hospital for 5 days, and came out looking and feeling like his old self.  The difference?  He had a different doctor who decided that since his disease is essentially an overproduction of inflammation (in a very basic nutshell), that they should put him on steroids and see how he does.  The result was nothing short of amazing.  He felt better physically with less pain, and his head cleared and he was able to think more clearly.  He was more awake.  They released him on Tuesday, with a referral to a doctor who specializes in rare diseases.  That doctor happened to be in the SAME practice as the doctor he has been seeing for the past 5 or 6 years.  We have no idea why we were never told about him.

Last week, he had his first appointment with the new doctor and he has given us more hope in one visit than the other doctor has ever given us.  The new doctor is already treating another patient with Erdheim-Chester Disease in the same practice.  He studied under a doctor at Sloan-Kettering and a doctor in Boston who both have experience in treating ECD.  He started my husband on a new medication, has a brand new plan for him, including monthly visits, scans, and testing for a gene mutation that could change the course of his treatment in a positive way.  The hospital also gave him other resources to help him and the family.  In 11 years, we never knew any of this existed.  One trip to the hospital, for what we thought was just another hospital stay with some sort of infection, turned out to be a blessing in disguise.  We had the right doctor at the first hospital who questioned his lack of current treatment, who sent him to a specialty hospital, who had the right doctor on staff to lead us to a completely different doctor with a much better plan.

Life is still a struggle, and the illness will always be there.  We’ve watched as my husband slowly deteriorates, not knowing what to do or where to go.  Just when you feel as if life has kicked you so hard that you don’t want to get back up, the right people, in the right place, at the right time, enter your life.  And everything changes.  We don’t know yet what the outcome of all of this will ultimately be, but we feel hopeful for the first time in a long time.  Sometimes, that’s all you need to get you through.

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Teachable Moments

Nov29

When my husband’s tumor was first discovered, our children were only ages 9, 7, and 5.  They were really too young to be kept in the loop about what was happening, and we went out of our way to hide it all.  They were too young to hear about doctors, illness, tests, and an unknown prognosis.  We spent two years not knowing anything, so it would have been  impossible to explain to them what we didn’t understand.  Once we started getting answers, the reality of what could be coming wasn’t something we felt they needed to know or worry about.  We wanted them to just be children, with no adult worries, and we wanted to keep their lives as “normal” as possible.  It worked for a while.

Now, our children are ages 16, 14 and 12.  There really is no more hiding, and it wouldn’t be fair to be less than honest with them.   They know Dad is sick.  They see it every day.  We don’t make a point of talking about his illness, but we answer honestly now, when they have questions.  That is a hard transition to make.  As parents, we want to protect our kids from the difficult parts of life.  Nobody wants their kids to grow up with a sick parent, constant financial struggle, and an inability to know what can be expected in the future.  Under the best of circumstances, none of us can predict what the future will hold.  But with an illness, it’s even harder.  Life is lived on a day to day basis.  Plans are hard to make.  Promises are almost impossible.

For a long time, I felt guilty that our kids were dealt this hand…living in a family with a chronic illness that hangs over us every single day.  I felt it was unfair to my husband, and myself, but especially to our children.  I had an amazing, happy, care free childhood, and it hurt my heart to know that my kids wouldn’t have the same experience.  I’ve always wondered how this experience would affect the rest of their lives.  Would they grow up feeling cheated, or insecure, depressed, or anxiety ridden?

As our kids grow older, I find myself looking at our situation in a different way.  I’ve accepted that this is how things are and there is nothing we can do about it.  We can fight it and wish it were different.  That doesn’t work…I’ve tried it.  We can let it consume us and ruin our lives.  For me, that has never been an option and I wouldn’t allow my kids to let it affect them that way either.  Now, I try to look at it another way…a way that will hopefully help my kids.  My kids are, and always have been, watching me and how I respond to my husband, his illness, and our life as a family.  I hope that they have learned that spouses are loyal, through sickness and health.  I hope they have seen that life can be brutally hard and not go as planned, but that you simply don’t give up.   I hope they have learned that sometimes, you just have to put your head down and plow through the tough times, and that eventually you WILL come out the other side.

Now that our kids are more aware of what is happening,  they are asking me more questions, and talking to me about their feelings…whether positive or negative.  It’s my opportunity to continue to teach.  The most common feeling they have mentioned is frustration.  They get frustrated that their Dad sleeps a lot, and spends a lot of time just sitting and watching TV, or wandering aimlessly around the house, not doing much of anything.   They get frustrated when they see that he eats and drinks unhealthy food.  They get frustrated that he is often too tired to do something with them, or drive them somewhere.  They get frustrated when he won’t wear a seatbelt.  I completely understand their frustration, but I take those conversations as the opportunity to sympathize with them and to teach them that we can only control ourselves, not other people.  My kids tell me they don’t like to talk about it (as they are talking about it), and it gives me the chance to tell them that talking about it relieves them of the burden of holding it in.  I encourage them to talk about their anger and frustration because I know it helps to let go of it and share it with someone else.  I tell them it will eat them up to hold it in if they are sad, angry, or upset about something.  They tell me they want to spend more time with their Dad, but don’t know what to do with him.  I tell them to tell him that they want to spend time with him…it will make him feel good, and they will always remember the times they spent together.   Communication is important, and they should always tell him when they want to be with him.

As life evolves, and the years go by in our household, there will always be teachable moments that I hope will help my kids throughout their lives.  I could live with a heavy heart, wishing that life for my kids was different.  Or, I can share my experience with them in the hopes that they can move forward through their lives with a little bit of wisdom, and a foundation for dealing with the hard blows life can throw at them.

Call Me Crazy

Jun22

I’m about to do the unthinkable.   I never thought this day would come, to be honest.  I had to think about it for a couple of months, weigh the pros and cons, and seriously consider the fact that I just might be certifiably insane.  What would I be missing?  Would my life be over?  What the hell will I do with myself?  How will I survive?  Then it struck me like a lightning bolt.  These thoughts are precisely why I need to do this.  I need to shut down my Facebook page.  That’s right.  I said it.  I’m shutting it down.  Not permanently…I’m not that loony.  The plan is to shut it down for the summer.

For the most part, I have enjoyed Facebook over the past few years.  I’ve gotten to know people better, and I like that I can see what’s going on, and share in people’s life events.  But over the past year or so, I’ve found myself more and more irritated with the nonsense and insignificant dreariness that people feel the need to share with the world.  I’m confident that I can make it through my day without knowing where people ate dinner the night before, what cashier is out sick at the local Walmart, and whose kid saved the world from some imminent disaster.  I can manage to drink my morning coffee without seeing someone’s 137,868th  selfie or picture taken by their bff.  Here’s a newsflash:  We all know what you look like…you haven’t changed since yesterday.   I’m also confident that I can survive, and so too will other people survive, if I don’t share the crap I share, too.  Facebook is ultimately a crapfest of who did more, who did it better, who looks better, who went more places, who has a better imaginary life, who has a smarter kid, not to mention those awesome vague posts that are simply an attention-getting tactic.  I need a break.  I spend more time being irritated than I do enjoying.

As I thought about doing this, I realized I need a plan.  I can’t just go cold turkey without figuring out a way to spend my time sans FB.  At first, I was almost in a panic and came very close to ditching the whole idea.  Then I thought, what did we all do before the internet and social media?  We all managed to have a life before Facebook was invented.  So, I made a plan.  This summer, I am going to do the many things I’ve claimed I didn’t have time for over the past several years.  I am going to read as many books as I can.  I am going to go to the gym several times a week.  My family joined the YMCA, and my kids are just as eager to go exercise as I am.  We are also doing a major nutritional overhaul in our house…no more junk food or processed food.  Well, occasional junk food.  Let’s be realistic.  I used to draw and do artistic things.  I want to start drawing again.  I find it incredibly relaxing and enjoyable.  I lose hours at a time, just by creating a drawing.  I also want to get my house in order so it’s not an embarrassment when people drop by.  I HATE cleaning, so if I get it cleared out and have a plan to keep it up, it will free up time to do the things I enjoy.  I want to get back to nature by going to the beach, going on hikes, or just sitting outside and reading.  I want to spend more time with my kids and give them my full attention.  I want to write.

I’m sharing this all through my blog for two reasons.  One, it’ll keep me honest.  If you all know I’m ditching facebook, then you will also know if I sneak back on.  I don’t have the self-control to do this on my own.  I need to be able to tell myself that I’ll look like a spineless moron if I don’t do it.  It’s the embarrassment factor, which is always a good way for me to not do something.   The second reason is that this is all part of an experiment that I will be writing a blog post on in September.  The experiment is just to see if I can do it, and what I can accomplish by getting rid of a serious time suck in my life.  If I can do it, other people can, too.  Life is too short to waste time reading about what other people are doing.  Life is about going out and doing.  If I die tomorrow, I will be much more satisfied that I spent today sitting on the beach, reading a book, talking to my kids, and enjoying all of OUR moments.

If Adults Acted Like Kids

Mar25

When hanging out with toddlers or pre-schoolers, people love to talk about how sweet and innocent they are.  They go through their days being spontaneous, not caring what anyone else thinks.  They immerse themselves in their experiences and live for self-pleasure.  I’ve heard numerous adults admire that about young children, and question when we lost that innate spontaneity.  I frequently watch young children and wonder to myself what it would look like if an adult were doing such things.  This is for my own amusement and entertainment.  I have spent a long time “researching” the behavior of little kids and what would happen if adults lived in the same spontaneous way that children do.  This is what that would look like:

 

At a business lunch:  Professionals and executives would be trying to seal the deal over chicken nuggets or spaghetti and meatballs.  At least one person would be blowing bubbles in his chocolate milk, while another stacks suger dispensers, salt and pepper shakers, and silverware in a tower.  Perhaps that would be the architect or builder of the group.  Yet another would be scribbling on his placemat.  Someone would likely have sauce rubbed all over his face and in his hair.  There may even be one well dressed woman crawling under the table, or flinging her legs over the back of the booth seat.  Never mind the potential for launching peas at each other with spoons.

 

At a business meeting:  Rolling chairs.  Think of the fun that can be had in a conference room with rolling chairs.  I’m thinking races around the table, and spinning each other until you can’t walk a straight line.  That sounds way more fun than watching some boring presentation on sales or marketing.

 

At the doctor’s office:  A husband brings his wife to the doctor.  She needs a physical.  She spends an hour in the waiting room, playing with the germ infested toys.  Once in a while, she stops to approach another woman.  She stands in her personal space, stares her down, and then looks her up and down, from head to toe, judging her by the way she looks.  Then, they start to play together…one puts a toy in her mouth, drops it on the floor, and the other picks it up, and puts it in HER mouth.  Finally, they get called into a room.  The man undresses the woman while she fights him the entire time.  Once she is in her underwear, she spins around on the doctor’s stool, climbs on and off the table until the paper is a shredded mess, plays lightning storm with the lights, and touches every last medical tool available.  The visit ends with her screaming bloody murder and fighting the nurse, the doctor, the husband, and six bouncers as they try to give her a shot.

 

At the grocery store:  Picture a mature couple walking into the grocery store.  They select a carriage.  The wife holds it still, while the husband climbs in to the back.  It would be way funnier if he tried to get into the little seat in front, but that would require a full on extrication by the fire department at the end of the trip.  So, let’s stick to the back.  She struggles to push him through the store because, as usual, she picks a carriage that only wants to go left, and of course, he weighs 200 pounds which makes it more of a challenge.  Five minutes into the shopping experience, he starts to whine because he’s bored.  He starts grabbing crap off the shelves.  He keeps standing up, so she has to continually remind him that he needs to sit.  He begs for some garbage food item in every aisle, and pitches a fit every time she says no.  The other shoppers give her dirty looks because clearly she can’t control his behavior.  Everyone thinks she’s a shitty wife.

 

In the car:  They leave the grocery store.  She tries to strap him into his seat belt and he does the whole “arching his back thing” while crying and screaming that he wants to go home.  Once they’re moving, he calms down and entertains himself by making faces at the people in other cars.  He might even suck his thumb.  Eventually he gets sleepy, and dozes off.  By this time, the wife notices a scent that indicates he needs his pull-up changed.

 

There are many scenarios involving children that would be way more entertaining if adults were the key players and not the kids.  Picture an adult stripping off his clothes and running naked through the playground.  Wait, that would just be creepy.  Bad example.  Picture adults playing in the dirt, or tossing stuff in the toilet and swishing it around with their hands.  Picture them running everywhere, and falling on their faces like a two year old.  Picture them riding the dog, climbing on the furniture, having a tug-of-war over a toy, or sticking a metal object in a socket to see what happens.  You can switch the players no matter where you are or what you’re doing.  It really is funny.  Next time you’re stuck in a board meeting or some mind-numbing adult activity, switch the players.  It might be a social faux-pas to act on these ideas, and you would likely appear to be mentally ill or at the very least socially immature for doing any of it.  But nobody can condemn you for simply thinking about it, and honestly, as long as you’re entertaining yourself, that’s all that really matters.

How Not To Raise An Unlikable Kid

Mar24

I’ve worked in an elementary school for the past 6 years.  It’s probably the single most entertaining job I’ve ever had.  Kids crack me up, and I am that person who is likely to giggle for a little too long when someone’s little darling innocently makes some innuendo filled statement that only an adult would notice.  Kids can be adorable, and wise beyond their years…or they can be little dicks.  I’ve had multiple conversations with multiple adults about how disrespectful children can be these days.  You used to be able to count on one hand how many kids were poorly behaved and disrespectful.  Unfortunately, the tides have turned and it’s more likely that you can count well behaved, respectful kids on one hand.  With this in mind, I give you my advice on how to prevent your kid from being on the ugly side of that statistic.

 

1.     Teach them that it’s not amusing to be a little punk who ignores the directions of adults.  Believe me, we know they find it amusing because they tend to have a smirk on their face that makes even the most even keeled of adults want to slap it off their face and into next week.   It’s not cute, it’s not because they’re young, it’s because they haven’t learned to respect adults.

 

2.     Teach them that the adults at school are NOT blind.  When we see them do something right in front of us, it means WE SAW IT!  No matter how many times they say they didn’t do it, WE SAW THEM DO IT!   This might be a good time to start teaching them accountability.  When they punch a co-worker in the ribs in front of their boss someday,  they won’t get away with saying they didn’t do it.

 

3.     Teach your child some independence.  Show them how to open a friggin straw, or wipe their mouths.  For the love of all that is great and holy, teach them how to wipe or blow their nose!  It’s unbelievable how many kids need help with EVERYTHING.  It’s not because they aren’t capable, it’s because they never have to do anything for themselves.  I’ve seen parents come to school for parties or lunch, and they literally spoon feed their child!  PLEASE, let them do things for themselves.  They will be okay.

 

4.     Teach them not to be wimps.  Seriously.  Life is a lot easier when you can suck it up and move on.  There are so many kids who whine over trivial injuries, invisible cuts,  and act like they are crippled for life when they have  microscopic booboos.  Then you have the kids who suffer daily with hourly stomach aches.  A lot of this is for attention, so for everyone’s sake…especially your child’s…give them the attention they need.

 

5.     Teach them to be a good friend.  Nobody likes a tattletale, and there are kids who make it their job to rat out every other kid in sight, for even the slightest of transgressions.  Unless a classmate is going to get hurt, it’s usually okay to let things slide.  Teach your kids that manipulating others, talking behind people’s backs, ranking friends, and being visually disgusted when someone sits next to them, is not going to win them friends.  Teach them to be kind.  It’s not okay to be mean and hurt people’s feelings.

 

6.     Teach your kid that not every damn thing that is said and done “hurts their feelings.”  A lot of kids like to use that phrase to get other kids in trouble.  They tell the adults at school that so-and-so hurt their feelings, usually with an annoying smirk on their face. Refer back to rule #4.  Tell them to get over it.

 

Clearly, this is not an exhaustive list.  It’s just a starter guide, if you will.  It boils down to teaching kids that school is a place for learning, and that teachers and other adults are to be listened to, responded to, and respected.  Stop babying your kids, stop assuming they are always innocent, teach them how to do for themselves, and to treat other kids the way they want to be treated.   Ultimately, it will make your child a better member of society, a better friend, and a better person.  It will also prevent you from being the parent of the kid that nobody likes.  Don’t be the parent of THAT kid.

Let Kids Do Nothing

Feb28

It’s Friday.  The day the world rejoices because their work week is over.  It’s the only day of the school week that my kids don’t mind getting up.  Weekends are full of possibility and free time.  To me, the beauty of the weekend is sleeping in, and enjoying my time at home.  It’s also a chance to do laundry (just enough to get through a couple of days), clean the house (just enough to avoid a ‘condemned’ notice from the health department), and perhaps cook a meal that doesn’t involve french fries and the microwave.   Mostly, I just enjoy being home.  I am a homebody.  I like going out sometimes, but my home is my oasis from the craziness of the world.  I don’t need my weekends full of social events and gatherings.  In fact, being out and about all weekend would stress me out.

Unfortunately, my kids disagree.  Right after the school buses come rolling by to drop off my little darlings, the pestering starts.  “What are we doing this weekend?”  “I’m bored.”  “How can you stand being home and not doing anything?”  “Can we do something?”  Granted, it’s fun for kids to have places to go and things to do on the weekend.  And we DO do things.  They spend a lot of time with their friends, and we occasionally go out to eat, or to a kid-friendly entertainment spot.  But the incessant requests for entertainment from Friday night to Sunday night is a little much.

I tell them all the time that when I was a kid, we didn’t spend all weekend going to places to be entertained.  Once in a while we would do things like that, but for my generation, weekends were spent with friends from the neighborhood.  Our days were filled with riding bikes, going to the park, and hanging out at each other’s houses.  It was the 70s and an awesome time to be a kid.  Even when we were home, we did things like hang out in our rooms, playing by ourselves, drawing, or reading.  We even went outside alone, or with siblings, to find things to do.  I know it isn’t the 70s any more and times have changed.  But when did it become the norm for people to spend weekends, school breaks and summer vacations endlessly entertaining their kids?

On a very frequent basis,  my kids tell me about all the fun things their friends are going to do and the places they go with their parents.  I see it myself on facebook at the end of almost every weekend.  Many parents post multiple pictures of their kids out at restaurants, the skating rink, the trampoline park, the theater, hotels, rock climbing, bowling, the movies, etc…and these are people who do several of these things EVERY weekend. When are the kids getting time to just hang out and BE?

When did we turn into a society that makes entertaining our kids a priority every weekend?  How will these kids learn to cope with quiet and solitude? How will they learn to cope with being bored, and finding something to do by themselves?  How will they learn to be their own friend?  The need that so many kids have for constant stimulation makes me sad.  Having down time and finding creative ways to entertain themselves now, will be of benefit to them as they get older.

As they say, “to each his own.”  They also say, “everything in moderation.”  In my opinion, it’s important for everyone…kids and adults…to learn to stop and smell the roses.  Go out to that restaurant, or to a party, but save just a little bit of time for doing nothing.  Doing nothing sparks creativity, and gets the brain thinking.  It leaves time for imagination to be used.  It lets the brain rest.  The world still needs creativity, imagination and new ideas.  Doing nothing leaves time for those things.  It really is okay to do nothing.