Tonight I signed on to my blog to turn it off.

There was a pending comment.  Thanking me for sharing our story.  Finishing by saying live life like Jack.

We should all live life like Jack.  We should be less concerned with what others think, say, and value.  We should spend our time doing the things we love.  Surround ourselves by those we care about.

I have often feared this day, the day Jack and Kate we come to realize just what it means to have Cystic Fibrosis.  So this is my letter to them.

My darling babies,

From the day I was told you had cystic fibrosis I vowed to fight.  I also made up my mind that you would be Jack and Kate who have Cystic Fibrosis.  Not those kids who have Cystic Fibrosis Jack and Kate.  You were not going to be the Poster Children for this disease and I was not going to let it define you.

I was going to protect you and teach you to handle your CF, but truth be told you have taught me that you are so much stronger than this disease.  You have shown me how to live life and enjoy what we have every day.  You have guided me through this.  Jack, Kate and Sam this was not the life I envisioned, it is so much better.  Your love for one another, your support for one is more than any mother could hope for or dream of.

I want you now to know, you are strong, resilient, and empathetic.  You Jack have spent time in hospital than most do in life time, and you kate have been by his side.  I am the one who is blessed to have you.

Know this my beautiful babies, it is a different world for children with cystic fibrosis.  I will fight for you every day.  Do not worry about your future.  I am not worried.  I am in awe of our strength and courage.

I love you with all of my heart, you have given my live meaning.

Mom mom

Anything Can Happen.  Its better now.  Jack has been home for one month.  The girls have gone on with their lives.  Jack has gone with his life. They are good that, they live life and they live it well.  Finally, I am going on with mine.   I remember when Jack was diagnosed.  When, five months pregnant, I was told Jack had Cystic Fibrosis.  It hurt to breathe.  I used to hold him at night and rock him to sleep and whisper in his ear, "don't leave me Jack, stay with mommy."  

One month later, I found out the baby girl I was carrying had Cystic Fibrosis too.    Not knowing what the future held terrified me.  I wanted to see, I wanted just a snapshot.  I wanted to know.   I read everything I could on the internet, drove our doctor mad with phone calls. Finally, Dr. Quittell told me to stop calling, she would call me.  So I waited, I waited for her call.  I waited for her to tell me everything was going to be ok.   And finally settled into life with three children under three. 

Throughout this journey, I have held it together.  We ski, some years logging 40 days on our skis, travel to warm destinations, California to Atlantis.  Kate and I have seen everything on broadway , all our favorite museums and many exhibits.  She is my city girl.  Sam and I traveled the east coast, Sam is a talented a competitive swimmer.  I have tried to attend Jack's skateboarding competitions.  I am currently banned from the skatepark.  Apparently, it's frowned upon to run into the skate park, yelling honey are you ok? when your son falls off his board.   I have cooked, thrown birthday parties, chased them, bathed them, hugged them and loved them.  I have lived life as if everything was okay.

I do this successfully when Jack is not in the hospital.  When he is, it all comes back.  The fear, the loneliness, desperation, the panic.  The nights where I sleep on the chair next to his bed and whisper into his ear, "do not leave me Jack, stay with mommy, don't go".  When he was little I worried he would be scared and he would need with me.  Now I worry about me, I do not know how to live my life without him.

Sam and Kate are Jack's sisters.  They love their brother, the protect him and look out for him.  Some wonder why I never mention Kate in my blog.  Kate has my heart.  She is sweet and smart and sensitive.  Kate has never been sick.  Not one day.  Never.  She is Jack's foundation.  When he was little she came to the hospital and watched endless movies with Jack.  Mostly Pirates of the Carribbean.  She played video games with him.  She stayed over.  

I am not sure what the future will hold.  I know this past stay was the best yet.  Maybe Jack is handling his pancreatitis better, maybe this is our future.  Maybe everything will be ok.

Sam is leaving for Bucknell in the fall.  Life without her, well I am going to miss her with all my heart.  She is blessing, smart, athletic, beautiful.  I have needed her, I have needed her to help me keep this family together.  I know I have to let her go now.  I am not ready to do that.

While this hospitalization was the shortest, for me emotionally it was the hardest.  I do not know why.  Maybe because my father died a few months earlier.  Maybe because I know Sam is leaving.  Maybe because it was the holidays.  Babies hospitals are notoriously lonely, but they particularly lonely during the holidays.  

With a little help from my friends, I am back. A little slimmer, a little wiser, a little more confident about Jack's future.  Taking a page from Jack, I am living life and living it well.  The past week has been the best I have had in months.  So thank you, for the cards, the dinners, the calls, the posts, the flowers, the book recommendations, the CD (loved that), the hugs, kisses and love.     

I am still waiting for my call from Dr. Quittell.  I know in my heart.  Anything can happen.

I Will Never Get Used to This

I started my blog two years ago when Jack entered Columbia Pres.  with Pancreatitis for the sixth or seventh time.  I've actually lost count. Two years later, this January, Jack was admitted to Westchester Medical with Pancreatitis.  In the beginning, I started the blog to keep a medical record of Jack's hospitalizations.  It has become much more than that. Where do I begin this time?

Following Christmas, we packed the tule and headed to Stratton with a forecast of snow.  The snow fell, by morning there was 8 fresh inches and it continued all day.  Jack and his friend headed to the woods, he was on the chairlift by 8:30.  Sam and I headed to the Sunbowl, I spent the day chasing Sam.  Everything was bumped up, while she effortlessly flew the bumps,  I struggled.  Note to self:  I dropped her off at ski school at four because I wanted her to be able ski with me, I did not want her to be able to smoke me.

We all met up at lunch, Jack could not wait to get back.  Sam and I lasted till two, when I just could not feel my legs. At one point, I considered running into a tree, then they would be forced to bring me down in a basket which seemed easier than skiing down at this point.

In the end 22 inches of snow  had fallen.  We were so excited for the rest of the week.  A vacation that Jack had looked forward to for months.  His favorite of the year. Six am, Jack came into my room with a look.  There was no need for him to say a word.  I knew.  I knew he had pancreatitis and I had to get him home.

Pancreatitis' main characteristic is extreme pain.  I wondered how I was going to get him off this mountain.  Its a four hour drive.  Sam, my beautiful girl jumped up and started packing the car.  I offered to drop her with friends, let her stay.  She said no I am coming with Jack.  I gave Jack a Tylenol PM  It was all I could think of.

We made it home, made it to the hospital and started process of getting him admitted.  The ER doctor asked what was wrong with Jack?  I said he had Pancreatitis.  She doubted me, they always do, asked how I new for sure, was the pain coming from his back?  I said he gets a look in his face.  We need to get a line in him and get medication before his next attack. Thankfully she listened and all of that happened before the lab results came back showing that he had a full blown acute attack of Pancreatitis

Our longest stay in the hospital was 9 weeks and six months with a Picc Line.  Jack was fed through a Line that bypassed his pancreas.  I took care of that line.  His shortest stay before this was three weeks, with Picc Line.  He never left without a Picc Line. I was never afraid of the Picc till two years ago, when his Picc line infection made him sicker than I had ever seen him.  Now I was terrified of this line.

You would think, by now, I would effortlessly get through these hospital stays.  I am often told how strong I am and capable.  Well no, that is not the case and thats not what happened.  I handled the days in the hospital well.  I know exactly what needs to happen to get Jack home and I spend my days there making sure it happens with the least amount of screw ups possible.  I fall apart when I go home.

At the hospital, the nurses are my front line and always excellent.  The doctors I chose ahead of time, so clearly trust them and believe in them.  The residents, are like three years, reckless and a pain in the ass.  I need the nurses and I need the Doctors i do not need the residents.  So when the resident screws up, which they always do, I throw them out.  They always complain which makes me laugh, after all I make it clear, I am not there to make any new friends, I am there to get him home.

My favorite resident story was when jack was a year old and was in the hospital for a two week stay.  Getting a line going in Jack proved very difficult and I quickly learned nurses were far better than residents at getting a vein.  The residents blew away all the good veins making it  harder for the nurses. I became very protective of Jack's veins, so when the resident came saying she needed to draw blood, I told her I need someone more senior to do that.  She said "Mrs. Clark I am the most senior person on the floor so maybe you need to leave the room while I do this."  To which I said "One of us is going to be leaving but its not me.  I have bras older than you, you march out there and get one of those qualified nurses to do this if you want the blood.

Anyone who has spent anytime in a Children's Hospital will tell you its the loneliest place in the world and over the holidays its ten times worse.  I do not think I will get used to it.  I do not think will ever adjust,  I do not think I will be ever  handle it  as well as I would like.  I get lonely.  I get scared.

My girls handle it.  Jack handles it. Before I took Jack to the emergency room, Sam hugged him, and Kate packed his bag.  Kate has spent years by Jacks side in the hospital.  Kate is one year younger than Jack.  They were inseparable when they were younger.  Jack was Kate's world, whatever he wanted to do she was right along side.  Often Jack did not have the best ideas, like the time he took the keys to the minivan, jumped in, started it and was pushing the peddle by the time I realized they were gone.  And there was Kate, sitting shot gun.  I told the two them, I did not think this was a very good idea, Jack did not agree and Kate agreed with Jack.

The hardest part is the beginning, before they get his pain under control.  Seeing him in that much pain breaks my heart.  His father will say "try giving him the least amount of morphine possible".  Fortunately the nurses and I agree, give him what it takes.

This time, Jack did really well, his numbers went down and all the doctors seemed confident he would leave without a Picc Line.  The line he had left with every other stay.  The Picc Line I live in fear of now.  Last time he did really well too, we came to this point and he was being discharged.  But then it was like the movie the perfect storm, when they see the sky clearing and they think they have made it only to have to storm engulf them again. Last time Jack did not go home, he stayed for weeks and got a Picc Line.

I was home the night before the Jack got discharged, sure that the numbers would up in the morning and he would staying.  So convinced that I cried myself to sleep that night.

Thankfully, I was wrong, Jack come home and one week later I am happy to say he is good.  I am not.  It always takes me a little longer.  The first few days, I cried on the phone to who ever would listen, I feared we would end up right back in the emergency room.  I grabbed on, I held a little too tight.  I fell apart.  I lost it.  I was so far from that strong girl who handles this so well.  I am ok now.  I always am.

A footnote:  I am blessed to have wonderful people in my life who shower me with love.  I appreciate every post, tweet, like, book suggestion, phone call, special CD and more ... I am here to say it makes a difference.  I am forever grateful.

Dear John

To: John Byrne,  Jack's nurse, my guardian angel.

Dear John,

I am writing tonight to thank you.  Thank you for helping Jack and saving me. I was watching the ceremony for the children in Connecticut.  Brought me back to when Jack was six,  and it was the holidays and he got sick.  The first time he was really sick.

Do you remember the first time you met me John? I do.  It was December 23.  Jack had finally been released from Columbia Presbyterian Babies Hospital.  On November 2 of that year we brought Jack to the emergency room, he was in so much pain, we had no idea what was wrong with him.  He has Cystic Fibrosis and I guess I always thought it would lung issues that would bring us to the emergency room.  This time it was Jack's pancreas.

If I knew than what I know now,  I  would never have survived those first days.  I was so naive. I thought we will be there for a couple days, they will fix Jack and we will go home.  I was so confident of this,  I told Jack he did not have to wash his hair till we went home.   Jack had dreadlocks by the time we left Columbia Presbyterian Babies Hosptial.

Eight weeks, two surgeries, a thousand blown IVs and one provac port later we were finally going home. It was not that Jack was better. He was not.  I think now I know that insurance companies do not want to pay the hospital bill.  So home we went with the promise that I would have nurses living with us, to care for Jack, around the clock.

They could not find any nurses so they sent you, John Byrne (my guardian angel) to teach me to care for Jack.  Remember coming into our kitchen, John? We had this huge island and you spread out enough medical supplies to keep a third world country going for months.  Than you looked over at me and said "this is what you need to learn how to do."

Tears streaming down my face I turned to you and whispered "I cannot do this, I will hurt him." You smiled, held my hand and said you are gonna be fine.  Everything is going to be okay.

You came everyday, until I got the hang of things.  You gave me your number and said call anytime of the day or night.  And I did.  You always answered.  Remember the time I unhooked the wrong thing, I was sure he was gonna keel over, I called, you answered, I think it was 3 am.  We fixed it and went back to bed.

I want to thank you John. Thank you for being Jack's nurse and for teaching me to care for him.  The last time I saw you, was right before Christmas two years ago. (I have a love hate relationship with the holidays.)  Jack was hospitalized three weeks this time. Seeing you when I answered the door, well I do  not think you will ever know how much you mean to me and Jack.  We have grown to love and rely on your caring and compassionate manor.  I have so enjoyed your Irish sense of humor. My favorite was the time I was going on and on about a mistake a doctor had made and you turned to me and said "Liz why do you think they call it practicing medicine."


I miss you John, you will always have a special place in my heart.  With your help, we are winning our fight with Cystic Fibrosis, me and Jack.

I am sorry for the families in Connecticut who were not even given the chance to fight for their children.   I am thankful my fight is not over, and that I still have my son.  I do not know that I could find a place for me without him.

Thank you John.

With love,

Liz

Members of a Club

Tonight I met Lee Woodward. The evening, in honor of her new book. Evenings like tonight give me hope. It is so inspiring to meet a mother and wife who is a member of the club that no one wants to be member of, yet she prevails and makes sure others benefit. Her husband suffered a dramatic brain injury. With love and support, her family is in tact and she is making sure other families faced with the same injury have the support they need. Once Jack was diagnosed with Cystic Fibrosis, I hit the internet, the same internet his doctor had warned me about. Most of what I found did nothing to help me. I was looking for a cure, a reason, an explanation. I was told "the lord only gives what you can handle". Clearly, that was a huge mistake. As my father, my mother and brother will tell you, I was the week link in our family chain. Then I was told, if the outcome was not in your favor, then they (your baby) was in a better place. What is a better place for a child than with their mother. Finally I read Alex, Life of Child by Frank Deford. His anger resinated with me. And it helped, it helped me to know that like me, he was so mad at this disease. Some think we have great health care in America, and yes if you are healthy we do. Healthcare is business. If someone can make money off of your child's disease, you are in luck, the odds are in your favor, if not, oh well. I had the honor of meeting Frank DeFord. His daughter died from Cystic Fibrosis at the age of seven. He took my hand and tried to put me at ease. He said "Liz your children have a much better chance. " I said "We are all members of a club that no one wants to be a member of." I thank Frank Deford for continuing to do so much for the Cystic Fibrosis Foundation. Long after he lost Alex, he lost his fight, he continued to fight. And because of him my baby has a much better chance. I wish I could say I would do the same, I hope I would. I hope I would continue to fight after I lost everything that was important to me. I admire and I thank him for all he does for Jack and all the other children like him. I also know, every child born deserves a chance. No matter what the cost or how much that drug company is going to make. What is the cost of that one child? My dream is that every member of this club will get their the call. The call to say, your brother, your sister, your husband, your wife, your mother, your father, or in my case, your baby is cured. Your fight is over.

Happy Birthday My Beautiful Boy

August 3, 1997, that is the day Jack came into the world and set us on a course that would at times bring me to the edge. I would like to say his deliver was ordinary, nothing remarkable. Nothing would be further than the truth. I was past my due date so my doctor brought me in to be induced. A snobby resident from California started the Petocin. I have learned that if you are going to deliver your child at a one of the best teaching hospitals in the country you are going to have to learn to put up with overly confident residents and everyone coming in and out of your room, I do mean everyone. So Miss San Fran got everything started and then did a sonogram to see "how far down the head was". Well it was not down, not down at all, Jack had turned in the last three days and was breach. I started crying, the last thing I wanted was a C section. In walked my doctor (who I loved). She asked me the following: Have you had anything to eat? No. Drink? Yes Coffee. Cream in your coffee? Do they serve it any other way? She left the room, came back with the perky resident and said "We are gonna flip him" Then she asked Miss San Fran if she wanted the head or the butt. It was something right out of Alien, watching them flip him. But it worked. They flipped him and one hour later, bruised and battered, Jack came into the world. He was just a lamb of a child and I adored him from the start. If you have read my blog the beginning months were difficult. Jack was sick and his diagnosis took a blow to my family. Within a year, Jack was this blonde ball of energy. There were times I was convinced he had some battery back, he was always on the move. Jack did not limit this to our yard or even, like most children, within view. We lost Jack everywhere, Disneyland, Malibu Beach, The Westchester Mall, there was even a lock down at Khols. He was fearless and curious and nothing was going to stop him. The only thing that stopped Jack was the Hospital. And his only question for the Doctors during his stay "When will I be able to get back to the skate park?" So many people have said that Jack is lucky to have me. But quite honestly, I am the lucky one. He has taught me how to live life and live it well. So it is your birthday my beautiful boy. You are fourteen years old. I remember when you were diagnosed, Dr. Quittell told me many children with CF were making it to their eighteen birthday and going to college. It brought me to tears then. If that were still true, that was all the time I might have left with you, that would bring me to my knees now. Much has changed during your lifetime my darling boy. There has been so much progress and mothers are being told a very different story when their children are diagnosed. This wonderful progress is the result of the kindness of others, every dollar raised, every dollar donated gives me more time with you. I will never be able to thank the generous people who make your life possible, but I carry them in my heart with you. I once told by your lung doctor, after she had had enough of my endless calls, I will call you when there is a cure. As I have said before, I am still waiting for my call and I know in my heart I may never get it. But someday a mother will get her call and this fight will be over and we will have won. Happy Birthday my Beautiful boy and to my dream of many more.

My Life With Jack: She is beautiful Mrs. Clark

My Life With Jack: She is beautiful Mrs. Clark: I have lost count of how many times during my stays with Jack at Columbia Pres I was told "she is beautiful". Jack dressed in a hospi...