Saturday, April 17, 2010

Homecoming: it's bittersweet

Remember I said we had 30 stairs? I was wrong. It's 29. And the ambulance drivers had never seen anything like it. There was no point getting the stretcher out because they couldn't carry it up the stairs. So they picked Ben up in the blankets he was lying on and carried him in what, from a distance, looked like a body bag.

It was exciting to see him make his ascent today, but once we had him in the medical bed in his room -- beside the reclining wheelchair which will be his other main destination for six weeks -- reality set in.

D'Arcy took the other kids out for a treat and I got panicky. I put my back out at the hospital yesterday and Ben's like deadweight in a heavy body cast. He needs to be repositioned frequently. Because of the way he was casted, he can't sit on a toilet so he has to use a bedpan and urinal and we've had some accidents. He's bored and uncomfortable and at times demanding. "I hate my cast" is one of his favourite comments on his iPod.

I'm struck by all of the parents who need to lift and physically care for their children all day long. How do you do it?

The stress and exhaustion of the last week are playing out between D'Arcy and I. We seem to have fallen back into the "roles" we played when Ben was much younger and had repeated health problems and hospitalizations: I magnify everything, and he minimizes everything. I feel he isn't taking things seriously enough, and he thinks that if I'd just calm down, everything would be fine.

There isn't any redeeming quality to physical pain. I know we've talked a lot about accepting our children with disabilities, but that can never mean accepting pain. Ben had periods of terrible pain this week. I listened too many times to other children on the unit crying out: "No, stop, you're hurting me" for what seemed like an eternity. It made me feel so small and weak.

At one point I sat in the hall when a team was having great difficulty catheterizing Ben, who was being held down by D'Arcy, and I tried to do Tonglen meditation, which you may be familiar with if you read Buddhist nun Pema Chodron. I breathed in all the pain and fear, and I breathed out peace and comfort. In and out.

But Ben screamed till he was hoarse and finally I had to go in and say "I can't do this anymore." They gave up and called the urologist.

Pema talks about using our pain to develop greater compassion for ourselves and others. Perhaps that's possible for adults. But when I was in hospital this week, pain in children seemed crushing, not character-building.


Oh, God. This post is just heart-breaking. I think your thought that pain in children is just plain crushing and not character building is an important thought, and I think, too, that that thought is Buddhist-like because it acknowledges a truth. Nothing good comes of pain in children. Absolutely nothing. I am so sorry that your boy had to experience this and sorry that you witnessed his and other children's pain. Perhaps, though, your witness is what is important and acknowledging the crushing part of it. Blessings and peace to you, over and over and over. I wish that I could do more to help you.

There may be some kind of redemption in what we learn from pain, but there is no redemption in pain itself. I'm sorry you guys are struggling so.

I wrote a blog post after my daughter's latest hospitalization (in which she had very little pain, but we witnessed the pain of others) that has gotten more views than anything I've ever written. I'm a Christian and at the very end I bring that in but many people have found something valuable in this piece even if they don't share my beliefs. It might mean something to you in your present state (or not, please don't bother reading it if all you want to do is lie down and close your eyes or veg out with the TV or something!)

Continuing the prayers for you, Ben and your family. It will get better.

Oh Louise. It's hard to take in everything while reading. It takes me back to Gabe's hospitals stays during his first 18 months. Especially when you describe how you and D'Arcy have slipped back into your coping roles. I just completely get that.

I am also reminded of the long line of children we "came to know" at the hospital too. I agree with Elizabeth: nothing good comes of pain in children. Well said and very true.

It is good to learn that Ben is home -- the picture is a bit scary, isn't it? -- but seeing him tucked in there gives me a sense of comfort for him. I think he'll be much more apt to heal at home.

Louise, are there respite and aide services you can employ so you can mend your back?

I hope that in the next week, Ben will find his activity groove at home so that he isn't bored. His casts makes things so limited -- I think a lot of imagination play (puppets, crafts, art, reading, computer, etc.) will be a good thing?

Anyway, please know that our family is thinking of you all. Big hugs for Ben!

Oh I hope today is a better day for Ben and for yourself. it's so not fair is it.


Although that judgment call as Ben's Mother came much sooner then I had anticipated, "Good for you!" For, periods of terrible pain may be a part of having surgery, but there is no reason for unnecessary suffering --believe me, "There is a difference."

Moreover, whether one is an adult or a child, pain will not build character and can be crushing without a reason or purpose to endure unforeseen hardships. For instance, I was about Ben's age when I underwent my second major surgery on both legs, as I have Cerebral Palsy. I too was in a casts for six weeks. After being bed-bound and surviving phyical therapy, I told my Mom, "I will never undergo another operation as long as I live." Her response was as typical as any other parent, as she declares, "Matt, you may need a third surgery, and I'm going to make sure that you get it!" Needless to say, "I was furious and replied, 'You don't get to decide, as I will be over 18 --God, how I wish that I could take those words back. Today, I am talking to you as a thirty-second year old, awaiting a referral to see orthopaedic surgeon, knowing full well what is in store for me, but happy that my words may help those reading this blog.

However, there is also another purpose and difference between the years of yesterday and the posibilities of tomorrow, as my surgery will not be crushing but liberating. For, I have a reason to endure enormous amounts of pain: I want to put on my braces, grab my crutches, and walk the Terry Fox Marathon in honour of my closest friend, Alexandra Lynne Trancemontagne. Those who loved her most called her "Ali", as she was a fighter. Ali also gave a most precious gift, it is also one of the many reason for which you write this blog: "Ben, your son,is perfect the way he is, and you want the world to know him." Therefore, you walk into his room and help find a reason to fight back! For example, Do you remember me telling you that Ben's greatest greatest ability is how he helps others?" Well, now is the time to remind him. I'm also willing to bet my life that he will remember; no set of stairs will stand in his way for long. For I say once again, "Ben, will not falter, yield, or lose heart."

Please, have the catheter removed if it a source of pain, as the status quo is often wrong. I shutter at the thought of Ben having been catherized, as for no other reason than health care professionals who unable or unwilling to communicate with him.

Parents and children also make mistakes, but they can be remedied. The fight isn't over until you hear the bell. Get up!!!

Forever yours,

Matt Kamaratakis

Ellen - -the story on your website is beautiful and really gets at the complexity of life, of assumptions we make without true understanding, and how we spin stories in a way that doesn't allow for the light and dark.

We adopted two children -- siblings -- from Haiti about 5 years ago, and so I could really relate to what you wrote about the Haitian children you saw in the U.S. for medical care after the earthquake. It's so easy to simplify their experience and tell ourselves a one-sided story that meets our needs.

Your description of the girl's pain after spinal surgery -- and your own post surgery -- was chilling.

Thanks again for your support.

Thank you Elizabeth for shedding light on how nothing good comes from pain in children and how this is consistent with Buddhism because it acknowledges a truth. Thank you for your healing wishes

sending love and deep breaths in and out your way... hope the pain and boredom and struggles ease soon. tekeal

oh Louise I am so sorry I missed this. My heart goes out to you. I have ZERO tolerance for pain in children, particularly my own. It is such a trigger for me I have had to start cancelling non essential procedures as I get flashbacks to holding her down in the NICU.
I hope things keep getting better.