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.....

Jack's Sisters..

Jack is surrounded by woman in my house. I am a single mother.  Jack has an older sister Sam.  She is fifteen going on 35.  When Sam was two my father said "tilly (that was my nic name) samantha is beautiful, smart, athletic and fearless, she is nothing like you."   Thanks dad... maybe thats why I have had boy issues.. but thats another blog.   Sam is outgoing, she has been a competitive swimmer since the age of 6, an excellent student and a very pretty girl.  She is a handful and does not cut Jack any breaks.  Jack's younger sister Kate is a lamb.  She is built like her dad, lean.  She always has her head in a book and loves the theatre.  We love the theatre, the ballet and the nutcracker.

One of the hardest things about having a child in the hospital, when you are with the child in the hospital you feel like the girls need you and when with the girls I feel like Jack needs me.

Home, I spend the first few days picking up the pieces of my family.  I know the girls are sympathetic towards Jack.  But they let me know in no uncertain terms that they do not like being left on their own.  And I do not blame them.

HOME

And trying to figure out a new normal.  Jack has a tube down his nose and a bag in a pack pack.   I was up every three hours last night.. fear i was not doing it right, fear it was clogged, fear that it was empty.  Its like having a newborn.. and I am exhausted.  Happily exhausted as he is home.

He woke up demanding a bowl of corn flakes.. um no jack.  He is allowed clears... i started my day with starbucks and a donut (before Jack woke up).  He will start to gain weight with this NG tube but to date we have lost a combined total of 15 pounds.  I am wearing belts with my skinny jeans.

We will figure this out.. for now my beautiful boy is home and yes when the snow clears he gets to go to the skate park. tomorrow school, with a backpack and a tube down his nose that leads to a backpack that carries a pack with a creamy substance that looks kind of like formula.

Tonight

Tonight at 5:45 pm, I walked out the door of Morgan Stanley Children's Hospital with my beautiful boy in tow.

Before leaving Jack talked about the boy who would take his place.   Jack said "he will be so excited after spending days in the ER to be in this room".  To his mother, I wish you good speed, I wish your baby a short stay, not too many needles and peace.  And like me,  with all my heart I hope you leave with your beautiful boy in tow ....

All my cubs are home, and I am a very fortunate girl.  Jack's story is far from over, he has a tube down his nose and we have a long road ahead of us.   I will continue this journey on this blog...

Thank you for listening and being part of Jack's story....

To all of those mothers, with babies still in the hospital, and all those mothers whose fight is over... my heart is with you tonight...

xxx

Liz

More waiting.

Jack is still at Columbia... we are waiting... waiting for the insurance company to organize the home healthcare.  Jack is coming home with NG tube.  It goes down his nose, through his stomach and into the bowel.  We are opting for this to avoid another life threatening infection.

While the NG tube does not have the same risk of infection, it is less hard to hide.  Early on concerns about how Jack would handle going to school with a tube running down his nose.  Well apparently Jack posted on his FB page last night.. "yeah .. I have this tube in my nose".  I do love that child.

I am a lucky girl, he will hopefully be home tomorrow back with me and the girls... where he belongs.