May the road rise up to meet you. May the wind always be at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, May God hold you in the palm of His hand.
-Irish Blessing

Tuesday, May 6, 2014

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.

Monday, May 5, 2014

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.

Thursday, May 1, 2014

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.


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