Jacks...

Jack's sister Kate followed her brother Jack by 13 months.  She too was diagnosed with CF.  Sam turned 3 a month after Kate arrived.  Fortunately Sam was big and mature for her age so I put her to work immediately.  She was in charge of grabbing blankets, passys and books.  Often while  I was preoccupied with the babies, Sam would march over to Marsha's house.  Usually dressed in only a diaper.  Marsha, from the midwest had one daughter who had a better clothes than me.  So Sam a the door in only her diaper.. well..   I had other things to worry about.

Two children with CF can be a rough in that children with CF get each other sick.  But the bond they shared from the start has proved pricelss.  I often dressed them in matching outfits from Best and Co.  They ate at the same time, slept at the same time, played at the same time and took a bath at the same time.  Note To Self: one of my all time favorite Jack stories... once, after Jack and Kate had been bathing together for years.. they popped out of the tub and ran around naked.  Jack stopped in his tracks.. looked at kate and asked "Kate where is your Penis?"  Kate, the younger of the two looked at him like he was a complete idiot and walked away....

That bond has served them well.  When Jack goes to the hospital, so does Kate.  She plays games with him, or quietly reads if he is sleeping, we have watched all the Pirates of the C movies, the Bourne movies and endless episodes of the Simpsons.

This past stay at Morgan Stanley we took up the game of Life.  Kate continued to play even after Jack when forced to get a wife made her ride in the trunk of the car.  Sued her ten times for 10,000 each time. And with millions in cash, purchased a double wide for his wife, saying he only did it because he was forced to buy a home,  otherwise he would have left her in the trunk.  Needless to say he won every game.  Which says a lot about our culture...

Kate is Jack's companion...

Naive

Before having a sick child, I naively believed if there was a disease, there were teams of doctors working tirelessly to cure it.  I did not think about funding, but why would the government not pay for cures.  I could not have been more wrong.  The truth is its you and me and my friends and friends of friends that are left with the responsibility of finding a cure.

If your child is fortunate enough to have a disease which many others have, chances are there is a lot of funding for it and a lot of progress being made.  While CF does not effect a large amount of children, the organization and there is one, is very well run.   The overhead, 95% of the money they raise goes towards the disease, I have seen their offices and would have put it at 98%.. this is an good thing.

Others are not so fortunate as we are.  Their children have diseases that are rare.  Rare means, not many people raising money. No money no cure.  What makes it even more unfair is that the government makes the process for finding a cure very very expensive.  A great deal of money at the CF foundation is put toward getting medicine approved, through a very difficult and expensive government buearacracy.

First thank, thank you to all of you who donate.  If you have friend with a child with illness, make donation to that particular disease.  Attend fundraisers for childrens diseases and hospitals, they raise money you have fun and bid on trip or a spa day and go, everyone is happy.

I do not even want to talk about insurance companies, except to say our children get healthy or stay healty in spite of insurance companies.  Shouldn't it be the other way around?

So thank to all of my friends and friends of friends, who have walked in the rain, danced in a club, listened to endless speeches,  met the mets in order that we can find a cure for CF... your efforts working they are getting closer to a cure and have given children with CF a chance at a longer more productive life..

Thank you one and all....

Cystic Fibrosis

When Jack was first diagnosed with Cystic Fibrosis I called his lung doctor daily with questions and cures I had found on the net.  Silly to think she had just overlooked them.  Finally, Dr. Quittell said "Liz go home and live your life, I will call when there is a cure."   So thats what I did, I went home and took care of my babies.  I had three in three years.  Sam, my first was big and beautiful and bright, 20 months later she had a brother.. I still think there are days she has not forgiven as she truly enjoyed her Only Child status.

Jack came into the house like a lightening rod.  He was a ball of energy from the start, and his sister Kate followed thirteen months after.  I went home to take care of my babies and wait for that call.

In the years that followed I have been pretty good at doing just that.. when Jack gets sick, my world stops and I get scared.  When he was a baby, I would just hold him and rock a him and whisper in his ear "do not leave, stay with mommy Jack.. do not leave me."  I still kiss him goodnight, when he is sick and say Jack stay with me.

I am here, taking care of my babies and waiting for that call.

No Dinner for Jack

The only cure for Pancreatitis is no food and no drinking.  During an attack the Pancreas becomes inflamed and attacks itself.  The only solution.. bed rest.   Jack's last meal was December 1st.

He is allowed clears.. its the nursing home diet, applesauce, chicken broth, apple juice.  And slowly you introduce more food back in. So tonight, I am cooking for Jack.  I am making chicken noodle soup from scratch.  Sadly I will have to strain the past part out before giving it to him.. but it feels so good to be able to cook for him.

Last Night....

First off, in the middle of the day Jack decided he was staying with me for the weekend rather than go with his dad. then he started to put on his snow pants.  I looked in horror and said "Jack, what are you doing??"  Thats when he told me about his sledding plan.  To which I said.. "Jack what you are thinking.. you might get hurt".  Jack just had this look on his face (when your kid looks at you like you just said the stupidest thing they had ever heard).  He followed the look with "and.. your point?"

What was my point?  What more could possibly happen to him.  After all he had been through.  It was my fear, my wanting him to stay.. stay with me.. home where he was safe.  But is he?  He got pancreatitis home with me.  His got a near fatal line infection home with me.  Off he went.. when he came home I greeted him at the door as if he had been gone for a decade.. and settled him in.

Later that night, after reading an email that made me cry, I decided to have a heart to heart with Jack.  Where exactly I was going with this.. the emotionally crippled giving life advice? Off I went determined to make sure he was alright with all we had been through.

Jack was the one who saved me last night.   Jack said "ya know mom, its been three years since my last pancreatitis attack and I am out of the hospital, no more picc line and this tube in my nose is ok.  I am ok."  He went to tell me he felt lucky.  And further discussed his plans for more sledding tomorrow.

Why is it so hard for me to move on?

Jack's friend Sam

Sam and Jack met at the skatepark and became fast friends.  When Jack got hospitalized in December, he was at Morgan Stanley for almost three weeks.  Unknown to me, one week in, Jack posted on Facebook that he had been in the hospital for one week and one day and still no visitors.  Sam, new to Westchester asked his mother to bring him.  His mother is new to the US and the area, yet she put Sam in her Car, put Columbia Pres in her nav system and brought Sam to Washington Heights (Harlem)  to visit Jack.  Love that.

Last night, Jack struggling to be back to normal, begged to go Sam's house.  At nine he wanted a sleepover.  For most boys that requires a phone call.  Jack has tube in his nose and pack on his back and mother that has a hard time letting go.  But 9 pm, friend in tow, I went to Sam's filled Jack's bag and kissed him goodnight.

I just could not sleep.  And at four am, my phone rang.  I picked up on the first ring.  It was Jack and he was in tears.  I went to get him.  I guess without the pole the bag kept clogging and the alarm kept going off.  Jack, who is never in tears, said "I am never going to able to have sleep over, and I am sorry you had to pick me up at this hour."  Now I was crying, but I brushed the tears from his cheek and told him I loved him.  I also said I admired his courage and would figure this sleepover thing out.

Now I am tired and teary eyed.  He never cries.  Never ..four weeks in the hospital excruciating pain, needles, endless stays in the ER.  He never cries.. so this made me cry.

While I would prefer to have him ten feet away from me at all times.. I know now I have to learn to let go and let him find his way back to being normal.

Back to school

This morning jack wants to go back to school.  And while I so admire his courage, I am afraid.  He has a tube that runs down his nose, is taped across his check and the the tubing goes into a back pack.  The back pack contains a pump and a bag full of "food" for Jack.  His friends have embraced him.  They have come by in a pack to hang out with Jack.  But now he is off the the halls of middle school.  I know everyone will not be as kind, and for me this is heartbreaking.

I have told his sister sam to look after Jack.  The cruelest part about having a chronic illness is that along with the pain and hospitalization, there comes this....

I wish I could go with him.  Stand next to him.  Look after him.  After spend weeks in the hospital with him, it is so hard to let him go.....