Happy Birthday Sweet Wyatt, 11 years

Tonight our 5 year old was discussing Wyatt with my husband.  When he told her that Wyatt is now 11 years old I paused for a minute.  I was smack in the middle of the 5:20 throwing together of lemon poppy seed blueberry pancakes and time stopped for the briefest of seconds.  Eleven years just didn't sound right but a quick deduction confirmed that number.  Everything after a year seems farther away, but eleven years seems an eternity.  Eleven years ago I couldn't even begin to visualize this self.  I could barely see through my own tears.  My heart was so broken I feared it would never heal and I would never know happiness again.  I believed sadness would always hang over me like a dark cloud blocking out the sun.  Because dark clouds were all I saw for a long time after Wyatt was born.  Dark clouds, pregnant bellies and newborn babes.

Eleven years later I find myself smiling in the sunshine, holding my sweet son's memory close to my heart.  He has a special broken place inside that will never fully heal.  Wyatt's cupcakes are ready for tomorrow, the weather is promising to be quite the opposite from the day of his birth - sunny and warm.  The picnic is planned and as I learn every year, whether or not I'm ready for it, it will happen.  We will take Wyatt a handful of purple irises from the shadow of his new little willow tree and maybe a few daffodils from the shadow of Eli's tree.  It's my one day to let down all those defenses that I keep up almost every other day of the year.  Tomorrow is Wyatt's.

Happy 11th Birthday, my son.  Each year you grow farther away from my memory and farther away from my experience.  I wouldn't have the slightest clue what to do with an eleven year old boy, but I'd give just about anything to figure it out.  We miss you so.

Perhaps the Beginning...

My post on waiting yesterday is very fortuitous in its timing because today I discovered that while I'm waiting and not even devoting one iota of thought to Potter's Syndrome, others are.  Today I found a medical journal article published in February of 2014 in which scientists claim to have identified another gene which may be responsible for BRA (bilateral renal agenesis) which is the condition that affected Wyatt and Eli.

It is from the AJHG (American Journal of Human Genetics), Volume 94, Issue 2, pages 288-294.  Unfortunately I do not have access to the full article but the summary reads, in part,

"The pathophysiological mechanisms leading to total absence of kidney development thus remain largely elusive. By using a whole-exome sequencing approach in families with several fetuses with bilateral renal agenesis, we identified recessive mutations in the integrin α8-encoding gene ITGA8 in two families. Itga8 homozygous knockout in mice is known to result in absence of kidney development. We provide evidence of a damaging effect of the human ITGA8 mutations. These results demonstrate that mutations of ITGA8 are a genetic cause of bilateral renal agenesis and that, at least in some cases, bilateral renal agenesis is an autosomal-recessive disease."

If you are into genetics, the OMIM (Online Mendelian Inheritance in Man) entry explaining a little more about this gene can be found here.

Why is this AMAZING news?  Because now there is a gene mutation which has been pinpointed and can be tested within families to see if the mutation exists between the unaffected and affected members of the family.  It may not provide answers for mine, but it might and today "Might" is good enough for me.

Waiting for Spring

Yesterday, May 4th, it snowed.  It melted on contact, but STILL.  Snow in May just isn't spring.

My point?  I can spend my time lamenting the snow, the cold that chills me down to the bone and the wind that has lately accompanied it or I can just pull on my big girl panties and deal with it.  I find myself waiting so often.  Waiting for my kids to wash their hands, waiting in line at the grocery store, waiting for spring and the list goes on and on.  It's easy to to tell myself that things will be better when my youngest is potty trained, the older three kids are in school, the weather stays above 60 degrees and we can put away our winter jackets, ____________ (fill in the blank).

But what does that really do for me?  It keeps me hanging on for something that may or may not happen (hopefully in the case of potty training and school, right?) and who knows when it will happen.  I can find myself waiting for the sun to come out or my loved ones to change their views when we don't see eye to eye.  I would be much better served though by not waiting but instead by making the best of every situation that presents itself.  I don't even know if after these things I'm waiting for actually happen, whether I'll be any better off than I was when I started the waiting.

I remember waiting for both Wyatt and Eli to be born, knowing that I would never bring either of them home with me.  Talk about hard waiting.  I think waiting for death is one of the hardest things to wait out for anyone.  But those shadows lifted long ago.  Now it's just a matter of perspective.  I still find myself waiting, waiting for answers about Potter's Syndrome, hoping to find out why my boys were afflicted and hoping for treatment options in the future.  But I don't have to passively wait.  I do my own research.  I ask questions.  I keep my finger in the pot.  Because someday that wait will end and just like every moment since my boys' deaths, the world will keep turning.  I can't get lost in the waiting and the possible outcomes.  If I can make a positive difference to the outcome, I always try.  If I can't, I'm learning to live while I'm waiting and just make the best of it.

Comparison is the Death of Joy

"Comparison is the death of joy". --Mark Twain

As a bereaved parent I can't count all of the times that I have found myself comparing my loss and then my losses to others.  I've compared numbers of losses, numbers of living children, numbers of minutes lived, numbers of anatomical defects and the list goes on and on.  To what end?  I've found no comfort in my sons' deaths.  Where else could they be better off than in my arms, in my house, surrounded by their family.  No offense to my religion, but forget that heaven talk.  I am not 100% certain what happened to my boys after they died and I'm not 100% certain what'll happen to me when I die.  That doesn't mean I'm faithless.  I live believe my sons are in heaven and I strive each day to reach that height myself.  But Wyatt and Eli are proof that there are no guarantees.

It's easy to compare.  I think on some level it makes me feel better to find someone worse off than myself or to be able to tell myself sometimes that I'm entitled to whatever behavior or feelings I need to justify because of the magnitude of loss I live with each day.  Most days I accept the loss.  It's just become a part of who I am and who my family is.  My girls talk about their brothers in passing fashion after seeing their pictures.  It's all very matter of fact.  They have two brothers but those brothers aren't here.  It's hard to explain the why but they get the reality.  I'm learning to take each person, each family and each situation for what it is.  Completely separate from my own.  It seems like most people live with their own struggles and pain and what may seem to be a molehill to me is a mountain to someone else and my comparison or analysis of that is not helpful to anyone.

I recently came across this advice and it's really stuck with me.  When I find someone difficult to deal with or understand I remind myself that this person is most likely wounded in some way and I should handle them much more gently and with some apathy.  When I think someone doesn't deserve that kindness most is probably when they are in the greatest need.

Third Birthday Wish to My Sweet Eli

Three years ago today I gave birth to my second and last son.  The pain of that loss is  - unimaginable.  No number of children, laughs, smiles or incredible moments can replace those precious few hours I spent with my son and so today I sit here with tears streaming down my face missing him more than I thought possible.

Sometimes life is about reframing.  My life's frame cannot sit squarely on my sons and their absence.  I would be an disfunctional mess.  So I've had to shift focus.  Eli and Wyatt are still in the picture, they're just off to the side and a little blurry.  Never left out but only allowed to take center frame on two days of the year, their birthdays.

The salve that I've applied to my broken heart his year is that Eli lived almost his entire life in my body.  He knew mostly me.  He knew the sound of my voice, when I was happy, when I was sad and everything in between.  He felt my body wracked with sobs and my belly bounce with laughter.  He heard me singing to him and felt my soft caresses.  He slept to the sound of my heartbeat.  This brings me a measure of happiness.  It is amazing to me that I can still remember so much so vividly three years later, and almost eleven in Wyatt's case.  The feelings are still there, they don't leave.

So happy birthday, sweet Eli.  This year you have a special treat.  Mommy baked and frosted the usual chocolate cupcakes but your three older sisters decorated them and they are spectacular.

How Could I?

Not recognize Eli's birthday in a sea of dates  months and months ago?  I am currently the leader of my daughters' school PTO which is an exhausting volunteer commitment but one that I undertook voluntarily so I've really given it my all.  So much so, that it only occurred to me a few weeks ago that this month's meeting date falls on Eli's birthday.

I panicked.  I mean seriously.  I had marked these dates on the calendar in August.  Last month I typed it onto the February agenda.  How could I not have put two and two together during all of those months and all of the times I looked at that date?  To that I am speechless.  It's not like I forgot his birthday was coming up.  Of course when I finally added it up it was too late to move the meeting date which only increased my panic since it's a fairly important meeting that I wanted to attend.

But, I do very little on my son's birthdays.  Those are my special days to fill with memories and as much peace as I can garner.  I bake, frost cupcakes, buy balloons, make a special meal and then pack it all up, four kids included, and we take it out to the grave site where we eat, blow bubbles, remember and make wishes as the balloons float away.  That's it.  That is all those days are about to me.  I will not be attending this months' meeting, I'm making it work and that will have to be okay.  I just still can't believe that day didn't scream to me louder than all the other thoughts bouncing around in my head.

And the Heaviness Settles In

Winter has overstayed its welcome in a most uncomfortably long cold way.  A chill has settled deep into my bones and I just can't shake it.  Along with that, the sad anticipation of my littlest son's third birthday.  It seems impossible that just three years ago I gave birth to a sweet baby boy.  My life is so devoid of boys, it's a wonder my husband has any testosterone left!  Four girls with dolls, dresses, leggings, princesses, tutus and tiaras leave little room for toy car longings.  Yet I am ever reminded that he was real, my arms still carry the memory of his tiny body.  This time of year my mind just turns to mush.  Its evident in what I can remember, what I forget and even how I write.  Nothing seems to make sense.  Which is probably completely appropriate considering that Eli's absence still doesn't make sense.  My daughters' questions about why their brothers had to die don't have satisfying answers.  The day will come and go as it does every year and I will muddle through the next few weeks until that day passes with a heaviness in my heart and a bit of extra missing for my sweet Eli.  Time has done little to dull my pain but has done wonders with my coping mechanisms.