I can think of nothing worse than a child on hospice care. The family sitting there, day in and day out, hope gone. Feeling horrible because they cannot kiss it and make it all better. Sitting there feeling angry and sad, feeling like they cannot cope another day, another hour, another minute. Just pure agony.
We don't get too many referrals for pediatric hospice care. Most parents are reluctant to even think about it and fight to the last breath, many children dying in the hospital. I cannot blame them. I would most likely do the same.
But some MDs want the patient to be able to be managed at home. To die at home. To have their last days in a comfortable place. A place that feels safe to them.
And the parents who chose this option are so brave. So very, very brave.
I remember my first pediatric hospice patient. His name was Brian. He was 12. He was the bravest kid I had ever met. I have trouble even thinking about him, let alone writing about him. He remains in my heart always.
Kids have a way of doing that. Being special by just being.
Many kids who are not sick are very special as well. Actually, all kids are special. They just don't get to hear it as often. Many healthy siblings of sick kids are often jealous of all the attention their brother or sister are getting. They feel left out, isolated. They cannot talk about these feelings because it feels so wrong. They think, how can someone be jealous of a loved one who is sick? Something must be wrong with me to feel that way. But nothing is wrong with them. It is completely normal. We see it often. Sometimes in adults as well.
When I go to see a sick child, I also try to visit with the siblings. I bring them gifts. I give them small tasks so that they feel they are helping me with the care of their brother or sister. They want to help and feel a part of it all. As scared as they are, and they are, it helps them to cope. It makes them feel special, too. And they are special. And very brave.
I look at my own daughter. She is very healthy. I am very blessed. But I tell her all the time how special she is. Because things can change in a moment's notice.
People worry about spoiling their children. They worry that if they give them too much they will expect more and never be satisfied. But I say bunk to all of that. Make a wish wishes should not be granted only for the very ill or dying. They should be granted for the living as well.
Many people turn away or refuse to think about the unthinkable. But it happens to all types of families every single day. It humbles me to meet these wonderful families, the ones that have been through so much and still are able to laugh and smile and just simple carry on.
If they have one message it is this; love your child. Love them as much as you can and be grateful for them in your lives, even when they make you crazy. Indulge their whims. Do something unexpected for them on occasion. Hug them more. Tell them how much you love them.
And then tell them again and again and again and again.
While we try to teach our children all about life, our children teach us what life is all about.
~~~Anonymous
Death leaves a heartache no one can heal, love leaves a memory no one can steal. ~~~From a headstone in Ireland
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell. ~~~Edna St Vincent Millay
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