Saturday, May 31, 2014

Not Dead Yet

Monday is the big day!  

After three months of hitting cancer cells with some truly horrible (although life-saving) medication... we get to figure out if its all been worth it. 

Did the cells react as we've hoped by shrinking? 
Or where they resistant and now we push on to a full hysterectomy? 

I'm surprisingly calm.  After my health scare last month (mini-stroke from the meds) when they cut my daily meds from 10 pills to 2 pills and wanted to cut a month off the trial, I sort of flipped.  But when Dr. Z came around to the idea that May 12th was too soon and pushed my appt. back to June 2nd...I think I settled back down. The extra time has definitely been important for my peace of mind. I've also increased back up to 4 pills a day so I feel like we had more of a fighting chance against this thing.

...and I must say, the vacations haven't hurt either.  

March: Over a week laying on the beach in Hawaii was much needed for Mr. Thompson and me.

April: Five days in Idaho with family for our annual Easter tea party, glow-in-the dark egg hunt and introduction to the new baby farm animals was, as always,...family FUN!

May: Another week playing in California at Disneyland, the beach, pool and the baseball stadium was also good for the tan lines.  Not to mention the soul.

So, yeah...I'm relaxed and in a good place with my checklist.  

I've been taking time for me and pausing to enjoy it all.  I've been balanced and focused on my health by running a few races.  I've been keeping my 40 for 40 goal as a priority (run 40 race miles and lose 40 pounds by my 40th birthday this October) so I feel really good. I've also been reconnecting with the people who are most important in my life and that always puts me in a nice place.

Sure, there have been discouraging moments along the way...but I'm trying to navigate them as best as I can.

I sincerely hope Monday isn't one of them.  

I hope that I walk out from that appointment with the news that cancer is shrinking (or gone!), fertility hope continues, and health is going to get back to normal.  But if I don't, I recieved this in the mail from my brother yesterday so happiness will not be lost:
Looks like we are going back to New England in the fall for our annual sibling trip!  Maine is my favorite place on the planet and it doesn't get better than autumn in New England, so all will be well.  We'll eat lobsta', run a "Not Dead Yet" 5k trail run at the Fight Back (Cancer) Festival and then hit the road in the Mini-Lite camper for a wicked good time.

With a family like this, it's not the cancer I'm worried about.  Laughter is sure to kill me first, so the moral of the story is this:

I have a lot to live for.  With cancer or without - Babies or not.

Wednesday, May 28, 2014

One in a Million

Disneyland was awesome.  The resulting stomach flu, however...

Is not.

But as I'm laying here, I have to give major props to mothers.  I came home (after Lilie barfed on me during our 13 hour journey home) to lay bed, in my quiet air conditioned house.  My sister went home, feeling horrible herself, and has had to take care of five fevered, sick kids.

I symapthize. 

Oh boy howdy, do I sympathize.  Family vacation wore me out and told me that there is a whole lot to motherhood.  I salute my sister.  I salute you too - every mother out there...because I know that you work really, really hard for your family.

I came home and told Mr. Thompson about the feelings I've been having. About the sadness...the thoughts of finally moving beyond infertility...the changes within me  and the resolve. He quietly listened, kissed me on the forehead, and told me that we need to be patient to hear what the oncologist says next week.  

Not exactly what I expected from my 45 year old husband.  I honestly thought he would be relieved and jump at the chance to finally move on...but I realize again that he is just as invested in this as I've been.  

Bless that man.  

Having children is not just my dream - it's our dream.  Together.   No wonder I love him.

Thursday, May 22, 2014

Rolling In the Deep

I'm at Disneyland.  

Fighting the crowds with my sister and her 5 kids: 11, 9, 7, 5 and an almost 2-year old.

The weather is perfect and we are having an absolute blast.  We have been on all of our favorite rides no less than 3 - 8 times each, which is pretty amazing considering the long lines (thank you stroller swap pass!).

But I am tasting something new at the same time.

A new kind of sadness.

It's not so sharp and or as raw as infant loss grief... but it is there. In my bones. Just sitting there. Under the surface. 

I feel like the last half of my life's book is being re-written and I don't know how it will read or where it will end.  I surrendered a long time ago to the process but even in this, surrendering isn't easy. 

Something strong is telling me it won't involve watching the magical anticipation on the faces of my children ... or my children's children ... as he/she/they wait for the character parade down Main Street. 


It's a different voice than I've heard in the past. It's not doubt. It's not even fear.  It's a settling of sorts - like acceptance, when you finally turn that unexpected corner to the other side.

Which is why I'm so appreciative of my little sister.  When she had Lilie, her first daughter after four boys, I remember her holding that tiny bundle out to me at the hospital with the words, "Meet Lilie - I'll  share her."

And she has.  

My little sister has been true to her word and she's included me in all aspects of this little girl's life (even Disneyland).  

But I also know that it is a fraction of what I'm capable of. That's where the sadness comes in. 

Even in the most magical of places.


Sunday, May 18, 2014

Resolve

I'm sitting in an airport on my way to California.  A woman and her tiny infant are at the end of the jetway, patiently waiting for dad to deboard with the baby stroller.  They have huge grins and by the squeals of delight, you'd think they were seperated for years rather than mere minutes.  All I know is that as I watch them, something is continuing to settle within me.  

It's the same something that seeped a little further a few Sundays ago, as I watched two babies be blessed at church.

It's the same something I felt on Mother's Day when I didn't shed a tear.

It's the same something that's been taking root ever since the word "cancer" was introduced at the beginning of the year. 

...but if I was being honest, it happened long before that.

The best word to describe it is "resolution".

The dream just feels like it's getting further and further away. Out of reach. Like perhaps, just perhaps, this family of 2 1/2 is meant to be just that.  

A family of 2 1/2. 

Perhaps there will be other avenues to  pursue.  Those "easy" answers people keep giving me - foster care, adoption, surrogacy.  

Or perhaps not. 

Because you and I both know that they are far, far from easy answers.


Friday, May 9, 2014

Being the Mother Child Who Died - On Mother's Day


The following was published by Claire McCarthy, M.D. on the Huff Post Blog.  Claire is a pediatrician at Children's Hospital Boston and graduate of Harvard Medical School. 

Enough said - she nailed it. 

My favorite part is when she says, "At first, we are different because of our raw sadness. But over time, the sadness moves from our skin into our bones. It becomes less visible, but no less who we are." 

Truer words have never been more spoken. 

And so from me, to you....Happy Mother's Day my dear friends.  I wish you peace and happiness on this day and always as we celebrate our hopes, our dreams and the things that lie in the quietest corners of our hearts.  As G.K. Chesterton wrote, "We are all in the same boat in a stormy sea, and we owe each other a terrible loyalty."


"I am the mother of a child who died. And that makes Mother's Day very hard.

Recently I was talking to a mother whose child had just died. "What about Mother's Day?" she asked, through tears. It was hard to know what to say, because it's a terrible day for those of us who have lost a child. Other days of the year you can maybe make it a few hours without thinking about your loss; other days of the year you can pretend that you are an ordinary person and that life is normal. But not on Mother's Day.

On Mother's Day it's in your face that your child is gone forever. On Mother's Day you can't pretend you are ordinary or that life is normal. All the hoopla, all the Hallmark hype, the handmade cards and flowers and family gatherings, make it almost excruciating.

Our town has a Mother's Day road race for which I am eternally grateful -- especially because, in a demonstration of grace's existence, the start and finish are next to the cemetery where my son is buried. On my way I can visit his grave and say what I need to say and look yet again at the name we chose for him carved into stone. At the end of the race, they give all the mothers a flower; on my way home, I go back to the grave and lay my flower there. And then I move forward with the day.

See, that's the real challenge after losing a child: moving forward. It's almost impossible to envision in that moment of loss; how can life continue after something so horrible? But life does continue, whether we like it or not. There are chores to do and bills to pay; morning comes, again and again. So you pick yourself up and you live, but you are never the same.

At first, we are different because of our raw sadness. But over time, the sadness moves from our skin into our bones. It becomes less visible, but no less who we are. It changes into a wisdom, one we'd give up in a heartbeat to have our child back. We who have lost children understand life's fragility and beauty. We who have lost children understand that so many things just aren't important. All that is important is those we love. All that is important is each other. Nothing else.

It can feel very lonely, being the parent of a child who died. Especially on Mother's Day or Father's Day. We feel so different from those around us, all those happy people with children the same age our child was, or would have been. But over the years, I've come to understand that I'm not alone at all.

There is a wonderful Buddhist story about a woman whose son gets sick and dies. She goes to the Buddha to ask him to bring her son back to life; I will, he says, if you bring me some mustard seed from the home of a family that has not known loss. She goes from house to house but can find no family that has not lost someone dear to them. She buries her son and goes to the Buddha and says: I understand now.

That is what I understand now. It doesn't make me miss my son any less, or Mother's Day any easier. But it helps me make sense of it; loss is part of life. There are no guarantees, ever. Our children, and all those we love, are gifts to us for however long we have them.

I understand now too that we are together in this, all of us, in joy and in loss. It's the connections we make with each other that matter -- it's the connections we make that give life value and help us face each morning. As G.K. Chesterton wrote, "We are all in the same boat in a stormy sea, and we owe each other a terrible loyalty."

Years ago, I chose words to say each time I go to my son's grave. It makes it easier to have a ritual. And over the years, the words have come to mean more to me. They aren't just about grief anymore. They are about who I am, what I have learned, and what I can give.

"I will always love you, " I say. "And I will always be your mother."

Thursday, May 8, 2014

Hiding Under A Rock

If I was ever going to take a week off from life... this would be it.

Mother's Day.

Who ever would have thought that such a beautiful holiday, I've always loved in honor of my own dear mother...could turn into something so painful and hard.

And in true American fashion, we don't just celebrate the day now - we celebrate the week. Which is lovely...unless you are infertile. Infant loss is just a double whammie.

I need to find a rock because it makes me just want to disappear with a box of tissue until it's over. 

But before I go, here is my Public Service Announcement...

Things NOT to say to an infertile woman on Mother's Day:

  • "At least you're an aunt."
  • "Be grateful...you have a really clean house."
  • "Just think, you get to sleep in every weekend!"
  • "Trust me, you're lucky you don't have children!"
  • "It could be worse.  It could be cancer!"  (Yeah, I know...)
  • "Is it a His problem...or a Her problem?"

Things NOT to say to a woman who has lost her child, on Mother's Day:

  • "At least you are still a mother."
  • "What's the big deal? You already have a child."


Yes...each one of those things have been said to me at some point over the years. I know people were well-meaning...but words can still sting.

How about you?  What are some of the worst things said to you?

Sunday, May 4, 2014

I Run

If you remember... my word for 2014 is "Run". This post explains why, but essentially last October, I set a goal that I would run 40 race miles and lose 40 pounds by my 40th birthday.  

On Saturday, I took a step towards keeping that promise with the Miles For Mitchell 5k. I ran this race for a great kid who passed away on March 2, 2013 at the age of ten from acute heart failure as a result of Duchenne Muscular Dystrophy.  Mitchell's Journey lives on through a loving family and on Saturday, it lived on through me. 

It was hard... and I wasn't fast... but I was incredibly proud of myself.

It started at 7:30 and as I sat at the park watching the sun rise over the snow-capped mountains, the significance of this race wasn't lost on me. 

His broken heart, touched mine. 

Silent Auction paintings from a local artist depicting Mitchell's Journey. Stunning.


It was amazing to see a park fill up with people who have been supporting Mitchell's Journey on Face.book. The writings of his dad are some of the most beautiful and profound words I've ever read on grief and life. It was no wonder that people turned out like the did, some traveling from over 600 miles to be there.


It was a peaceful stretch running towards the mountains.



...and run, I did.


If it looks like I'm crying in this picture then you should know that I was. It was about mile 2.75 and I felt like I couldn't run any more... and that was the moment when I heard this little voice in my mind say, "I'm proud of you mom. You can do this."


I wasn't fast, but I did it. 

I ran.

34 miles to go.



Thursday, May 1, 2014

Twists and Turns

Let's just chalk the last 24-hours to prayer, shall we?

Dr. Z's physician assistant called back this morning. Upon further review of my chart, Dr. Z feels May 12th is too soon to reevaluate.

My biopsy is rescheduled for June 2nd. 

Whew!  

Keep calm and carry on.

Which leads me to my next question...

How do you stay sane while your on this crazy roller coaster called "infertility",  "life" or whatever challenge your dealing with?!  I'd love to hear your secrets to finding peace and happiness despite the unexpected ups, downs, twists and turns that we all feel on the journey.


Mahalo.

 
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