Shortchanged?

Someone asked recently if my kids are being shortchanged because of my disability/chronic health issues.

My kids have a different childhood or experience in life than other children do, but that would be the case if I weren't chronically ill.  No two children ever have the same childhood, even within the same family.

In some ways, my kids get away with more, have less responsibility (I actually worry that they don't have *enough* responsibility at times since I have cleaning and household help doing things they could be because I don't want to overburden them) and more privileges.  They may be more independent, but in what I think is a healthy way.

We have a car since I can't manage buses, which we certainly wouldn't have if I were well.

Things are different for them growing up than for other kids, but their childhoods are how they are supposed to be. He put them (us!) in this situation. He tailormaid it for all of us. Each of them are in the family He put them in, at the time He put them and given the childhood He planned for them.  God doesn't shortchange any of us.

My father was sick and died when I was a teenager.

I certainly wouldn't wish that on my children, but it was the childhood that made me and my siblings who we are B"H.

My kids are B"H ke'h happy, well adjusted children/teenagers who understand chessed, doing their part, invisible illnesses, the need to plan ahead and not leave things for a last minute rush, but also that we aren't in charge. Plans sometimes have to change and we have to be flexible.

My kids are definitely more responsible than if I were running the ship without needing their help at all.  One of my teenager is at the store now getting them to replace her little sisters shoes, which we bought three weeks ago. The sole came off so she volunteered to go and get it taken care of.    My other teenager is in the kitchen shaping challahs.  They know they need to help at times, and they chose these jobs today.  I am happy, they are happy and the house is B"H running smoothly.

Are they shortchanged?  I certainly don't think so, and neither do they.  Yes, they are spending half an hour out of their afternoons helping out the family, but in exchange they are getting life skills, pride in the abilities to get things done, yummy challah, a happy sister and a proud mother.   The littles sitting and playing Monopoly together don't look too upset about their lives either.

But most importantly, more than any of the other things I wrote about, my children know they are loved.  How can anyone be shortchanged when they love and are loved so much?

Thinking about death

God willing you and I have many many good years ahead of us, but recently I have lost too many close to me and I have other friends facing serious, potentially life limiting diagnoses.  I have found that most people don't even want to talk about or think about death, especially not their own chv"sh.

Leaving behind loved ones, children, spouses, and all of our dreams for the future seems impossible, yet it happens.  Even the thought seems too painful to contemplate.

When my father died I was a teenager. It was one of the hardest things I have been through.  The pain is still raw almost 23 years later.  But the pride and love is also strong.  I know my father did everything he could to take care of us and make the transition to being without him as smooth as possible.  He made sure my mother understood the finances, that they were in order and that financially we were in a decent position.  He wrote his own obituary so she didn't have to do it.  He bought his cemetery plot, made arrangements with the chevra kadisha and he even bought the wood for his casket, bought beer and invited his friends to come over and build it with him.

They refused.  He knew his time on earth was limited, but none of us were ready.  I can't say I am even now.

One of his friends did take the plans and the wood and built his coffin the day he died, before the burial.  I took the obituary and the fax phone numbers left and sent the faxes off.

The technical details were all taken care of and most importantly, we all knew we were loved and cared about.  We all knew that my father had done what he could to make things as easy as possible because he knew we would be in pain and he loved us and wished it weren't so.

He wasn't afraid of death, but he was sorry about the pain that goes along with being left behind because he loves us so.

Not all of us will be given that opportunity to prepare.  It is a gift, a heart wrenching and painful gift, to know that our days are numbered.  The opportunity to spend time with family, make preparations and make the time count, knowing it is limited.

But all of our days are numbered.  No one lives forever.

I believe that talking about our mortality can make us more human, leaves us more prepared and helps us live a better life.  What do we want to take with us when we leave?  What do we want to leave behind?  Who are we?  What is our potential?  How are we affecting those around us?  Are we making sure that those we love know how much we love them?  Are we living a life that pleases God?

Gratitude - the goal.

Sometimes it is so easy to be grateful.  Things go the way I want them to, people help in a way that is easy to appreciate, intentions and good and so are the results.

Sometimes it is just hard, especially with close family members and jobs I would rather be doing myself.

I have to work hard to keep from snapping, grumping, and being ungrateful for a job being done, but not the way I would like it.  But it is done and I couldn't do it, and their way is okay.  Maybe not as pretty, but totally functional.  

So I am working on it.  I am working on smiling when I want to cringe, saying thankyou with a full heart and appreciating even the things I wish I could have done myself.  

Can I play hookey from my body?

I really just need a day off.  I have been up since 7am, got the kids out B"H nicely and should have gone for blood tests.  My body is twitchy, I feel like an electric current is running through me, I am having heart palpitations, yet I want to hibernate.

I did blood tests and went for IV yesterday.  Today I want to stay home.

Urgent blood work needed to be sent off by 9am.  It is 9:12am and I am sitting at home blogging instead of leaving.  The latest time for blood work, without going to the ER is 10am.

It is so tempting to climb under my covers and tune out the world, but my body insists on coming with me and reminding me it isn't happy.

Making life a little sweeter

One of my goals is making good sweet memories for my children:  family fun, quiet time together, puzzles, cuddles, and happy memories.

Pesach (Passover) is on its way.  That means a lot of cleaning, cooking and potentially a lot of stress.  We do our best to keep the preparations for the holidays as fun and stress free as possible, but the kids do have to lend a hand and do a good deal of work.  The holiday cooking is also a lot of physical labor which I can't do on my own.  Our custom is to use minimal processed foods and we peel all of our vegetables and fruits.  We cook everything from scratch.

We have lots of fun, and lots of good food.  Homemade ice cream and fruit for breakfast, potato kugel and sponge cakes, meringues, homemade chicken nuggets, and lots of roasted root vegetables.

But every year one of my kids complain that they don't get their Shabbos treat.  Cake isn't good enough, ice cream isn't what they want.  I have tried making candy out of boiled sugar, bought honey just for candy making one year, and so far, never found a good sweet solution that made everyone happy.

Util now.  I realized tonight that cotton candy needs just one ingredient, sugar, which we use.  So I bought a new toy, one we will use one week a year and one week a year only.

I can't wait to see their faces when it arrives and I can't wait to make some sweet, sticky, and hopefully long lasting happy memories over the holiday.  <3 nbsp="" p="">

"Sheesh! They need to lighten up - its just cancer."

This was a line from a magazine column.  The lady writing the column is sharing her journey through cancer treatment, surgery, chemo, external beam radiation and all of the emotional ups and down that that entails.

My friend was really upset about the line.  She was offended and felt it was insensitive.

I read the same article and didn't even blink at the line, to such an extent that I wasn't sure if I had actually read that weeks column.  I had to go back and find the magazine to re-read it to realize I had.

The following was my reply to my friend:

I sympathise with your reaction to the line you quoted, but I also think I understand where the author is coming from as well.

Sometimes when people are going through them, they make light even of serious things. If you don't laugh you have to cry and laughing is more comfortable.

I was at a consult with a surgeon who wanted to do less of a surgery than the first two surgeons I had consulted with. I asked him why, and he said "I am not going to answer that since you won't understand anyway." My reply to that was to laugh. I am an intelligent and informed patient, so his answer seemed absurd to me. His response to my laughter was "this isn't funny, it is cancer!" and that had me laughing so hard I had tears running down my face.

To this day, whenever things get too much, all anyone has to say is "this isn't funny, it is cancer!" to start the laughter flowing.

Mind you, the doctor was wrong, he would have been leaving behind cancerous nodes with his abbreviated surgery. B"H I didn't go with him!

I lost my father to cancer when I was 15. I have had cancer. My brother had cancer. My grandmother had cancer. My MIL has had two kinds of cancer, one of them two times.

I take cancer seriously, but it is only cancer. It isn't my emunah (faith) or my kesher with HKBH (relationship with God). It isn't even my ability to laugh or smile. It is a nisayon (challenge), and not a pretty one, but if I had a choice I would take it over severe mental illness chv"sh (God forbid) or brain injury.

I am not downplaying cancer chv"sh, but if it is the nisayon I am given, I will try to get through it with a positive attitude, even if that makes it seem that I am not taking it as seriously as people on the outside would like.

 Cancer is serious.  It is messy.  It is horrible.  I hate cancer.  But it is also me.  It isn't something I can leave behind because it has changed me and how I must live my life.  It has robbed me of my father.  But I can't let it steal my sense of humor, my ability to laugh or my smile.  It has also been the reason I met some wonderful people and given me perspective on life that I wouldn't have had without it.

You know, miracles happen every day, but often we just don't notice

Today, thank God, I had open and obvious miracles.  With a bit of work, and a lot of flushing, my doctor was able to get things moving through my port again and even get blood return.  According to the laws of nature this shouldn't have been possible, but He can make even the impossible possible.

So, I am still on sepsis watch, will have to run to the hospital even on Shabbos if I start running a fever, but I know He can get me past this safely as well.

Now if only He can stretch my refrigerator.  With the holiday of Purim Sunday and Shabbos tonight, well I need a miracles to get everything in there.  We have 72 bagels in the freezer, 50+ bags of chocolate milk (they are the cutest Israeli thing, single serving size bags of chocolate milk) and about 6 lbs of cream cheese in the fridge.  It is stuffed with things to give out on Sunday, yet we need room for our Shabbos food tonight.
Maybe He will just make people extra hungry so there aren't any leftovers.  That would work too.  I don't get to order my miracles up specially, though sometimes I try, I just get to appreciate them as they come.