sharing

So a few months ago I got a letter from our Pediatric Hospice...the one that helped us take care of Tiny Man. They are starting (have started) an outreach program to explain what they do to the medical professionals, parents, and community that the come in contact with.

See, when you say someone is "with Hospice" or "on Hospice"...no one really knows what that means. I think that most of us understand that it means someone is dying. Does that mean that Hospice helps them? Cares for them? What if it's a family that doesn't have anyone else? What if it's a family that has...well...everyone they could possibly need?

I made a scrapbook about our journey with Hospice, and I wanted to share it here; mostly because it's something I'm very proud of (I think people who know me are sick of seeing and hearing about it). You can see the actual pages on my Flickr page starting here. The pages uploaded backwards, so the first page of the scrapbook appears last.....

So here is the journaling that explains what Hospice did for us:

______

Our son ** was diagnosed in-utero with Down syndrome and two cardiac defects. While the heart defects were not rare alone, they had been seen together less than twenty times. We spent the months leading up to his birth preparing for a high-risk delivery at Hutzel Hospital, and possible surgery after his birth.

After B was born we found out that he actually had three cardiac defects: a Truncus Arteriosis type I, Coarctation of the Aorta, and Complete AV Canal defect. In addition to this, his heart was slightly smaller in some areas, making fixing the defects a very tricky call indeed.

After discussing the options for surgery, and finding that B had very little chance of making it through surgery, much less living with a good quality of life afterwards; and finding that surgery would not guarantee a significantly longer life, we decided to enroll B in a pediatric hospice program, take him home, and live whatever time he had to it’s fullest extent.

Meeting with Hospice, planning for an end, is not what new parents expect. We didn’t even know what hospice was.

Hospice, as we found out, is family. They care for their patients medically, but it is so much more than that.

Illness, sickness, surprise, death, surgery, defect. These are the words new parents do not want to hear. Should never hear.

Hospice brought us normalcy. They emphasized that we had control. We had B. They did not dwell on fear, pain, suffering or the very real eventuality of B’s death. They encouraged us to live with our son, and to love him. They helped us bond with him in a very normal fashion.

We had power that had been taken from us when B was born “sick”. We were taught how to marvel at the little things new parents do, and forget the nightmare.

Doctors told us our son might, with luck, live two weeks.

Two weeks.

Together with Hospice, we knew B’s health was taken care of, and we were able to build memories of our son without being afraid; without being reminded of what was ahead.

But then we learned that B had other plans for his life and the people in it.
After two weeks had passed, B was just being B…living.
After three weeks, he was still here.

At one month, his doctor told us he was stable, static, and nothing had changed

At three months, we had him evaluated by Early On in our School System.

At seven months, he started physical and occupational therapy.

Two days before his first birthday, a birthday Ben was never supposed to see, he was discharged from hospice.

Then the fun began

B LIVED.


We took him birding, camping, hiking. He was showered with love. He met his entire family at family reunions. He went to school. He flirted with girls. He received therapy to help with the effects of his Down syndrome. He attended Christmas parties, weddings, funerals for friends, picnics. He went Trick or Treating. Twice.

In short…life was NORMAL.

Hospice gave us that gift.

We could have been afraid to do any of these things. We could have stayed in our house, worried that B would get sick. Worried that he was too frail.

Instead, we were taught that it was okay to be normal. B taught us to be brave, and strong, and to love the world and people in it; even in the face of enormous uncertainty.
On December 8, 2007 we welcomed B’s brother T into the world.
After T’s birth, B contracted one respiratory illness after another.
On February 20, after yet another visit to the pediatrician to deal with yet another runny, sneezy, sniffly day, we were told that B was in Organ failure.

Hospice was called on the way home, and they were at our house in less than two hours.

It was like they picked right back up; like they had never left.

We said goodbye to B less than 24 hours later, on Valentine’s day 2008. It was exactly one week before his second birthday.

In the hours, days, and weeks that followed, Hospice helped us with every last detail, from the nightmare of notifying the police of a death in our home, to planning the funeral, to walking back into an empty house.

They still visit with us occasionally, as we learn to navigate life without one of our guiding stars.

B’s life could have been full of
Anger
Blame
Argument
Uncertainty
Misunderstanding
Hospitals
Surgeries
Sterility
Sadness
Fear
Low expectations

Instead, B lived a life of
Nature
Home
Laughter
Love
Family
Friends
Learning
Playdates
Adventure
Certainty
And Miracles

Our whole family owes a debt to Walk With Me. They gave us the power to LIVE with our son, not wait for his death. In addition, that life was one of dignity.

So was B’s death.

Grief is never an experience one “gets over”, but when a parent loses a child, that grief is so very different, so much darker and more painful.

B has been gone a year and a half, and sometimes we behave as if he’s still here. Walk With Me gets that. They understand. Other people in our life, though filled with compassion, will never understand.

Hospice is like family. We would never have the many memories we have without them and what they did for us. We would not have been able to lift ourselves out of the initial bad news and bad scenario without them.

Thank you will never be enough.

______



If I could hug our hospice every day for the rest of my life, it is a task that I would happily undertake. Those people are angels, and they work magic. I owe our comfort and sanity, and the many memories we were able to make with our son to them.

So next time you hear about someone being taken home and put on Hospice, please know that they are living; and yes, dying, with dignity, respect, love, and family. They are the lucky ones who will not know fear of death.

We should all be so lucky.