Holidaze & The Christmas Box

It's that time of year again.  Really, it's always "that time of year".  Either I'm anticipating one of the boys' birthdays, just celebrated one of their birthdays or I'm facing another holiday season without watching them search for their Easter baskets, carrying their Halloween bags stuffed with candy bars, setting them a place at our Thanksgiving table or ignoring the two empty stockings on Christmas morning.  That's life after loss, right?

This particular time of year is especially hard for me, even though it's been 11 years since Wyatt was born and 3 since Eli was born.  It's still hard and I know it will always be.  There's just something about Christmas for me.

A few years back I wrote this post about what our family does to celebrate and remember our boys each year.  Not much has changed.  We still try to find a local group where we can choose a child that would be each boys' age to buy a gift for and we still try to donate toys when possible as well.  Even in the deepest snows we trek out to their grave site to clear the snow and stand by their Christmas tree for a moment.

Each year on December 6th at 7pm, our family attends a Candle Lit Remembrance Service where we hang ornaments with our sons' names on them on a special Christmas tree alongside many other little ones' ornaments who are no longer with their families.  It is a special time for us to focus just on our boys in the busyness of the holiday season.  We also have an Angel of Hope statue which is derived from the Richard Paul Evan's story "The Christmas Box".  You can read more about the angel and the story here.

Whatever you do this season and wherever you are in your grief, I encourage you to listen to your heart.  If you need a break, take one.  If you need to say no, do it.  The holidays are stressful and busy enough without the added burden of grief and longing.  We find that at Christmastime more than ever we just need time by ourselves.  Create traditions that honor your family and your memories.  It's okay to break old ones and start new ones.  In my opinion, a tradition is only as good as it makes you feel.  If it doesn't make you feel good and able to share warmth and happiness with your family, then what is your family going to remember by honoring that tradition?

My husband and I have made some significant changes to how we celebrate Christmas with our children.  Over the years, how we view Christmas has changed.  What we see and feel has changed and how we celebrate has needed to change as well.  Our families may not understand, but it has been important for us to hold true to ourselves and it is an ongoing process each year.  The year I was pregnant with Eli we found out about his Potter's not too long before Christmas and I spent many an evening sitting in the dark of our living room with only the light of our twinkling Christmas tree rubbing my belly and sorting through the depths of my emotions.  Years later staring at that same tree in the dark as it twinkles the same way it did then is oddly comforting.

May you find something comforting this holiday season and hold fast to it.  Blessings.

It's That Time of Year Again - Sharing

School has started which means for my girls, new teachers and new students who may know that they have three sisters but do not know about the girls' two brothers.  I leave it up to my girls as to whether they want to share that information.  At different times it has made each of the girls uncomfortable to answer their classmates' questions about who their brothers are and probably more importantly, where they are.  Having never had to tell anyone that I had a brother but that he died, I don't know exactly how that feels.  For that reason I really give them leeway about how they handle the situation.  Sometimes they've shared it at the beginning of the year and then let it go the rest of the year.  It hurts to hear the ways they've shared their brothers because it's just not the way they share their sisters.  None of them even met Wyatt so they have little to say about him and Eli lived so briefly that while they remember him they have little to share about their time with him.  He never took their toys or puked on their shoulders or called them names.  He never kissed their cheeks or grabbed their fingers with his own wrinkly little hand.  I feel for them.  My heart swells a little when they share and sinks a little when they don't but I respect that decision.  I mean, really, it's one similar to decisions that I've made 100 times when I meet new people who only see or know about my four daughters.  It's a split second decision based on a gut feeling and even those gut feelings can lead me wrong sometimes.

So far, two out of the three oldest girls have had a chance to share their brothers.  There's bitter with the sweet.  We'll see if the last one has a chance and what her choice ends up being.

Stuck

School for my three oldest girls is right around the corner and is just one of the things that will break me out of this rut that I'm stuck in.  I need to rearrange (metaphorically) and that is hard to do with four girls buzzing and sometimes screaming in and out of the house all day long.  Me and the little one will figure things out soon.

I've spent my summer running, running and running some more.  I kicked it off with a 10k amidst beautiful scenery and ever since I have been amping up my mileage to tackle a 10 mile race in a few weeks which is going to be followed (fingers crossed) by a half marathon two weeks after that.  These are kind of bucket list things for me.  When I find myself doing the same thing over and over I get bored.  I'm sure that's a good bit of human nature.  While I have eaten peanut butter and jelly sandwiches almost every Wednesday at lunch for the past six years or more and I'm okay with that, I can't stick with the same hairstyle for long, the same furniture arrangement, etc.  Some things are easier to change than others.  Nothing I do will bring Wyatt and Eli back and nothing I do will make me truly okay with the fact that they're gone.  That's a tough one.

But running I can do.  I've now pushed myself to distances that I never dreamed I could do.  I have running on my bucket list and I'm just ticking those items off like wildfire.  Every time I accomplish a new distance or speed it feels good.  I feel strong.  Even at my weakest after a hard run or race, I bask in that sense of accomplishment.  It helps that I can remind myself at the most trying moments that nothing compares to the pain of watching my child die or putting him in the ground and it makes things a little easier.

Moral of the story: grow and challenge, seek and embrace change.  Cultivate and build strength within yourself.  I find it's so easy to play the victim and expect someone else to help me change or fix me but that true healing is better achieved within because I know myself better than anyone and those things I think I can't do are just things that I'm scared to do.

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.

Ebbing

The waves of grief that pounded my shores just one month ago have receded to the depths and so far are staying there.  I don't have much to write which is exactly why I'm writing.  For those of you who are still being pounded by the waves every day and wondering if it will ever let up.  It will.  Even after the loss of two.  It will.

I don't feel like crying, I don't feel like shouting their names from the rooftop.  I don't feel much of anything.  Sometimes I think that's what happens when the grief comes on so strong after a period of time it just leaves me a little numb for a while.  I don't mind.  Wyatt and Eli are still in my heart and my thoughts.  I'm glad that thinking of them doesn't make me want to cry or crawl right into the wallpaper.  I've spent enough time in the servitude of grief and overall, grief hasn't served me all that well.  It is a necessary companionship, one of strength and growth, but it takes a lot of energy and determination.

I have a brand new picture hanging  in my hallway.  It is one of my four daughters, hand in hand standing on our balcony while at the beach last month, in the first beginning soft light of a beautiful sunrise.  Since the sunrise is at their backs, only their silhouettes are visible against the pastel light.  In the sunrise, it says  "We can only appreciate the miracle of a sunrise if we have waited in the darkness."

Deceased on his Birth Certificate? Ain't that a kicker?

I am in the process of registering my 5 year old for kindergarten this coming fall and I need a certified copy of her birth certificate which I have never requested before.  While I was doing that I requested one for our littlest girl and sweet Eli.  I have Wyatt's which we requested shortly after he was born but for one reason or another I just couldn't do Eli's until now.

A few days later they arrived in the mail.  I was excited to have that proof of life in my hands.  But what to my wondering eyes did unfold but the bolded word "Deceased" printed right below, right frickin' below, the words "Certificate of Birth".  Then, to add insult to injury, Deceased was stamped in large red ink across the bottom.  So much for his BIRTH CERTIFICATE.

This, combined with the fact that it was December 7th, the Christmas Box tree lighting ceremony where we hang ornaments for the boys each year at our local hospital, and the Christmas missing them blues just set me off.  And when I say set me off, you may not believe how far off I went.  I went straight to my best friend, Google, and got to work.  First, I looked at the birth certificate information for my state - nope, no mention that it would have the word deceased splattered all over it.  Second, I researched to see if it was required to be printed on the certificate.  Nope, not by state law or regulation.  Third, I got on the phone and called the State Registrar.  That didn't go too well.  I was told it was required by a model law, which of course is not true unless your state has adopted the model law which mine has not.  I was also told that it's in the standard computer printing and they can't change it.  Not entirely true either.  Fourth, further incensed by the door being slammed in my face despite my very legitimate complaint, I went back to my good friend and looked at what other states do.  There are a number of states that offer a more expensive heirloom certificate which does not have deceased marked on it.  There are a few that allow a special process for parents who have lost their children, such as myself.  So, then I got back on the phone and spoke with the State Health Director.  Gotta love living in a state where you can actually speak to state officials the same day you call them!  I didn't get a better result but instead a promise that the issue would be looked into further.

Fast forward, I got a call today and the compromise is a complimentary certified birth certificate without the red stamp on it.  It'll still say "Deceased" right below the word "Birth" which KILLS me but I'm going to try to find a way to cover it up discretely.  What I didn't mention above is it all boils down to fraud and is at least in part derivative of September 11th.  Damn terrorists and damn criminals.

Who would have thought something so simple as requesting my son's birth certificate could cause so much pain?  I'm considering approaching my local legislators about creating some kind of heirloom certificate here which would be that extra option for people like myself who want a birth certificate as a proof of life, not a reminder of death.  How sad this world has become sometimes.