Tuesday, June 08, 2010

Eleven Years

Eleven years ago today, Jack was discharged from St. Louis Children's Hospital PICU after spending almost five months there looking for answers that were never found and trying everything to avoid the inevitable.  

Who knew what the next eleven years would bring.

Eleven years of:

> sleepless nights

> threading a suction catheter down my child's airway

> dumping cans of liquid food into my child through a hole in his stomach

> changing out a plastic tube inserted through a hole in my child's neck

> rinsing my child's snot out of a plastic canister

> troubleshooting a machine that breathes life's air into my child's lungs

> changing trach ties and g-tube dressings

> wrapping a pulse-ox probe around my child's fingers and toes

> listening to the rhythmic whooshing of the ventilator and the rumbling of the suction machine

>  monitoring oxygen saturations and heart rate

>  having nurses in my house and following someone else's orders regarding my child's care

> ordering medical supplies

> telephone calls to DME companies regarding wrong orders

> reading EOBs

> working my way through countless telephone prompts to get to an insurance company representative who talks to me like I'm an idiot

>  meetings with nursing agency reps, department of developmental disability reps and vent dependent program reps

> x-rays, orthotics, splints and wheelchairs

> coordinating medical appointments with work schedules

>  email communications with doctors

> amazing friendships with nurses and doctors who dared to cross the line

> profound friendships with the most amazing women who walk this walk along with me

> experiencing the love, care and concern of the many people who care for, care about and support families like mine

> dashed hopes

> new dreams

> appreciating the little things

>  discovering who I am

>  growing emotionally and spiritually

>  learning

>  standing my ground and

> loving more deeply than I ever thought possible


The last eleven years have been anything but easy and while I don't believe that things always happen for the best, I do believe that it's possible to make the best of things that happen (to quote Tal Ben-Shahar, author of "The Pursuit of Perfect: How to Stop Chasing Perfection and Start Living a Richer, Happier Life").  I can't imagine a life without Jack and all he has brought to me and those whose lives he touches.

The one thing that has saddened me the most over the last eleven years has been my perception of Jack's quality of life.  His disease has stolen so much from him and there is so much he cannot do.  I often wonder why Jack has to live this life. Yet, not too long ago I had an "AhHa" moment that gave me a whole new perspective on Jack's quality of life.  I was sitting with my mom in the nursing home shortly after she was transferred following surgery.  My mom was in an incredible amount of pain, unable to do anything for herself and unable to communicate anything about how she feels or what she needs.  (My mom has severe aphasia as a result of the surgery to remove a brain tumor three years ago).  Sitting there with my mom, I got to thinking about quality of life and then it hit me  . . .  Jack has a phenomenal quality of life.  He may not be able to move a muscle, is dependent on a machine for every breath and requires assistance with every aspect of his life -- but despite these limitations, Jack is engaged, he is not in pain and he finds joy in his life.  It was the "knock up side of the head" I needed to appreciate that Jack's life has purpose and that I am richly blessed to have him in my life.


I've shared these pictures before, but I'm going to share them again. Pictures from Jack's discharge day - June 8, 1999.  

sporting his new "homecoming hat" - a gift from Dr. Garcia

the obvious connection between Jack and a very special doctor
(Dr. Garcia)

snoozing on the ride home


Anonymous said...

A great description of what goes on when you are caring for a medically fragile child. Jack is so fortunate to have such a loving, caring, aggressive (in a good way!) advocate as his mother. Your care of Jack has helped me become a better advocate for my own special little guy! I'm proud of our sisterhood.

Christina said...

11 years ago today I said hello and goodbye to my only boy. But knowing that day was a day of hope for you seems to have lifted me outa my hole tonight.

Ann said...

Oh Christina, I'm so sorry for your loss. In some ways, 11 years seems like forever ago and yet, when remembering the significance of the day, it seems like only yesterday. Many hugs.

Karen said...

Sending my love across the miles.

CS said...

What a great post. Thanks for sharing, Ann.

Dana said...

Once again your words are profound. Your words inspire and uplift me. It's an overwhelming job that you handle very well. Thank goodness we can have these kids in our lives. Thanks for sharing!

Anonymous said...

You are the only person I know that can make me smile and cry at the same time and you do it often! Give Jack a big hug and kiss from me, it is because of him that I am so fortunate to have you in my life. What a journey!
Hope the dog and Mary are feeling better.
Love to all - Miss you!

worthy said...

Ann- you did it again - had me crying and smiling at the same time! You say it like no one else could!
You may feel blessed to have Jack in your life - in fact, we are all blessed knowing you and Jack. But also, Jack is blessed to have an amazing mother like you


Melisande said...

I always love what you write Ann. In practical terms, you say how it has been. I love that list but it makes me tired to think about it. You are one incredible person and mother. I do think Jack's quality of life is great, it may be different than yours or ours, but he enjoys the life he has and loves his family and he is loved and beyond well cared for. He is a gift to all of us. You and I would have never know each other if it weren't for our boys and I often think how empty my life would really be without all these connections and experiences I've made because of my child.

You have made meaning out of this life, Ann, for yourself, your family and Jack. I love you guys!