Nothing Prepares us for the Death of a Child.

I remember when I was first pregnant with Mary-Elizabeth I was convinced I would never ever be ready to give birth.  I later looked back and realized all the sleepless nights, the getting up at at the oddest times to use the bathroom, all the discomfort that robbed me from sleep was preparation for after the birth. The birth for which I could not wait.... 

Life prepares you for what is coming your way. Little by little.  We roll over, we sit, we crawl, we pull ourselves up, we walk, we run... Much of what happens in the way of preparation happens in a simple way.  It sort of sneaks up and and at some point you are readied for the next task.  Unfortunately, sometimes the preparation is not for good things. 

I was visiting with a Cancer World Mom the other day and she related how she felt the early challenges with her child had prepared her for the Leukemia Battle.  I am a great believer in this idea and concept. It's the old "what doesn't kill you, makes you stronger" concept.  I have had way too much practice and experience, not in a good thing by the way.... 

Cancer Parents are reminded and buffeted every day with loss and the child death.  Every time a child dies, or one is dying or may die, the pit in the stomach is made wider and deeper.  As parents there is no adequate way for us to prepare for what is coming.  We all loose a gold fish, a bird, a cat or a dog.  We then loose our grandparents and extended family members and parents.  It sort of gets us ready for the next steps in the journey.  It paves the way, it gives some practice at handling the pain and emptiness that follows the death. 

 I so distinctly remember being unable to breath when my dad died.  As much as he is missed, it was okay that he was gone.  He had a great life. He did the things he cared about, he helped people, he ate BBQ in Magnolia, Arkansas, he read good books, he spent time with people he loved and in places he loved.  His lose was gigantic at first and then time seemed to make it okay.  At unexpected moments a memory will pop back or an item will present itself and it begins again.  The horrible feeling of emptiness piles up again.  It has been almost 20 years since my Grandmother died and I still think about sending her something or calling her.  

All of these parent and elder loses is the universe preparing us for the endings that are coming.  Giving us some prospective on the end of this life and how to best make the transitions.  Helping clean out a family home teaches us about the need to pare down and to focus on what little we need for the future.  The slow decline of a parent or a family member lets us practice and prepare for our trip down that particular rabbit hole and for their death.  

We are still always shocked and horrified and breathless when they die.  If it is sudden or if it is long and lingering.  We are still in a "state".  It should be a shock and heart break.  Those we lose are so important to us.  The greater the feeling of emptiness, the deeper the love we were able to share when they were with us in physical form.  It is a part of life, the ebbing and flowing of tides. 

So.... when a child dies before a parent we are stuck.  We don't know how to move on... even months and years afterwards, the wound is fresh and open and throbbing.  The reason being there is no way on this green earth for us to have any way to prepare. Death of a child is not supposed to happen. They are our little bit of immortality, the continuation of our story, they hold the future.  The pattern of understanding is simply dismantled in a blink of an eye.  It is over.  

I still have my child, she is away at school but we have looked long and hard at the brink and often slipped dreadfully close.  We have watched other's headed down that sad and solitaire path.  No one can join, relieve, help, or comfort those on the road to child loss.  They are on the mountain alone.  

From a comfortable distance, it is easy to say "why don't they stop treatment?"  "Why don't they go home?" "Don't they know it's over?"  I have to be honest, I have thought this at some point.  I guess it comes from seeing the suffering of everyone.  But then how do we ever be alright about stopping the treatment of our children? A cure, a reprieve, a new study, a new medicine. A new......   It is so so hard. 

Nothing ever gets us ready.  We have too much experience and know what our kids are missing during treatment and what they will be missing in the future.  We have to trim back our expectations and the dreams of their lives.  

When that lovely little squiggly life is put into our arms we just don't have it in us to think "Our child might die a horrible long agonizing death from childhood cancer."  It is not on the radar. At the beginning of life, we don't often think about death. 

I wish it was not on any one's radar.  It seem lately more and more parents are facing this horrible end to their child's life.  Keep them in your hearts. While we can't prepare, we can be supportive and helpful and if nothing else, sit and have a cup of coffee with them and let them tell you a good memory.

Lessons from Cancer Mom Parenting.

This was published in the Huffington Post.

  http://www.huffingtonpost.com/jessica-bensten/20-things-a-cancer-mom-knows-by-heart_b_5800640.html

I didn't write it but could have.  I am working on my list. 

I learned that kids can get cancer when Jackson was 1 year old. He'd just learned to walk. He still wore OshKosh B'gosh overalls and loved to be rocked to sleep. There was nothing that he did wrong, or was exposed to; one day, there was just a lump.

Chemo. Radiation. Surgery. Stem cell transplant. Immunotherapy. Intensive Care. Oncology. Even though it's been four and a half years since he finished treatment, some days it feels like it was yesterday.

At times, I think I was born the day Jackson was diagnosed. The world falls silent as cancer shuts out all the background noise of work stress, mortgages, that extra 10 pounds or what's on TV. It awakens a level of empathy to suffering and an awareness to what's truly important in life.

Once a cancer mom, always a cancer mom. These are 20 things I know by heart:

1. It is the most unnatural thing in the world to be told your child has cancer.
2. There's nothing you can do or say to take it away from them. There's no fixing it.
3. Babies can be born with cancer.
4. Toddlers can lie on the floor and throw a tantrum while having cancer.
5. Little Leaguers will miss their games because of cancer.
6. Teenagers can go straight from the hospital to high school graduation, then right back to the hospital.
7. Children can often handle higher doses of chemo than adults.
8. Kids can play hide-and-seek, chase each other in toy cars and build an epic Play-Doh creation, all while toting an IV pole with chemo.
9. Treatment straight up sucks.
10. I can feel a fever without even touching my child.
11. There's such a thing as radioactive urine. And I've changed that diaper.
12. Sleeping in a hospital bed with a sick child teaches you interesting life skills, like the ability to wake from a sound sleep, grab a bucket and catch vomit.
13. Some kids can have the opposite reactions to medications... like for instance, something that makes an adult sleepy might amp a child up. Having a toddler stuck on "fast forward" will make you bone-weary.
14. The first scar is always the worst. Taking that beautiful, soft baby skin and seeing it cut open is like ripping your heart out.
15. You realize nothing is as important anymore as getting your child well.
16. A mother's love knows no bounds. Not even being puked on, directly in the face.
17. You'll never forget the smooth, sticky feeling of a bald head against your cheek.
18. Every ache and pain, no matter how long your child's been in remission, will remind you that cancer can come back.
19. Statistics don't mean a damn thing when it comes to your child.
20. Kids never give up. And neither do their parents.

Gathering and Letting Go

 We are

essentially Hunter/Gathers.  We don't necessarily use those skills for the same reasons anymore.  It has been a long time since I went out and captured something for dinner.  However, I am on the hunt for cool and wonderful and life saving items and concepts and words and interesting things all the time. 

I love to watch and look and listen and discover.  It is something deeply embedded into my very being. 

One thing I gather are people.  People with interesting and varied lives. I love their stories and histories. I love digging deeply until I find the connection. The thing that makes us the same yet not the same.  For example, last night I had dinner with one friend and found out the server was the aunt of one of Mary-Elizabeth's friends.  I am sure we were at the same Graduation Party.   The threads that connect up are long and mixed up but they are real and are strong. 

We gather people all our lives.  The roll they play varies over the years but if we are lucky there is a continuity of great depth.  They know our stories and we don't have to explain too much. 

I also have hit a point in my life that I am loosing those very friends.  I learned of the deaths of two such people just yesterday.  Both were gone way before was necessary.  Both were in my life at various times and in various ways.  Those ways change but they were still there.  We still had a connection.  

This shedding of friends and family is much more painful then gathering.  I often wondered why Meb was so uncertain about making friends with her Cancer World buddies.  It is way too hard to loose people after 30 years of friendship let alone a couple of years. 

Here is to Alison Beck and Phil Caplan.  Both leaving in their 6th decade.  Way way too soon. 

To Vaccinate or Not To Vaccinate... WE have the luxury of asking that question.

Rotavirus vaccines are being rolled out across Africa at a remarkable pace thanks to the support of the GAVI Alliance. To date, 21 African countries have introduced rotavirus vaccines in their national immunization programs (NIPs), of which 17 were supported by GAVI. PATH, through the Vaccine Implementation Technical Assistance Consortium, has successfully assisted and supported GAVI and countries in the design, planning, introduction, and/or integration of rotavirus vaccines. 

It baffles my mind that there are people out there that choose deliberately not to give their child the best possible chance to survive and grow into a healthy child.   The article above was posted by Kathy Neuzil MD.  She works for PATH.  They work on educating people around the world on the purpose and need for vaccinations.

I think of all the people that died of small pox, and suffered from Polio or died of Whooping Cough.  It just makes me crazy. 

I know there are lots and lots of scared moms that are sure vaccines cause autism.  There lives were forever changed because of that diagnosis and they want an answer.  I certainly would want an answer but over and over again the link is not valid.   Unfortunately many of the times that Autism Spectrum disorders manifest themselves at some point during a child's development, chances are there is some sort of vaccination that has happened. 

Now I am not a medical professional, I don't have a degree in Public Health, I had the mumps, measles and chicken pox and lived to tell about it.  I was also vaccinated with everything that was available.   I hated each and every time ME had to have her shots.  I started making her Dad take her to those appointments.  But

I also know what it is like to watch a child suffer and struggle fighting a disease.  Why would anyone not prevent a disease if they could.  If there was a vaccine to fight childhood cancer, I would be the first in line to make sure every child received that gift.

I can't talk about this issue anymore.  Neither can I talk about guns.    

I have seen too much death of young innocent children and the destruction is does to their families.  

Just so we are clear, I gained a new appreciation for donuts and Spam after our trip across the country.  I also craved fresh veggies and green green salad.  

Major Distractions.

Amazing how filled up the calendar can become if you are not paying attention.

I planned to visit mom sometime the month of May.  Seems like a good plan. 4 classes on Monday only, Only one really big appointment on the 9th.  Oh yes, there is the visit from Brother David and his kids, Sam's Graduation in Spokane on one week-end, some subbing...  Oops, the whole month is gone. 

So on the spur of the moment, I headed to Eugene for a few days.  Some laundry, some kitchen cleaning, some cooking some Doctors and facility visitation, the amputation of Mia's tail.  I am home. 

Mom found a place that she really likes, the dog is on great drugs as she adjusts to being a hamster dog.  Mom is getting a new hip at the end of the month.  Life is nothing, if not interesting. Belle has kicked me off the Wisconsin to Albuquerque cross country drive.  I will be helping mom recover and going to school.

Mary-Elizabeth stayed home and finished her philosophy of human nature paper.  I just read it.  My daughter is a theistic existentialist.  I will put her paper up sometime soon after it has been turned in to the teacher.

I may have to again read all the books she is reading like I did when she was in middle and high school.  I don't think Nietzsche and JK Rowlings are on the same level.

Off to school for class 6, 4 more to go.  It is going to be a busy crazy summer.