D-Day

Our family is going away for a week on vacation and I have been thinking a lot about what I want to write about for while we are gone.  I kept thinking I wanted to discuss what my expectations for the upcoming trip are, but I am coming to the conclusion that I would rather find out what vacation has in store for me instead, and then share it later.

When I am honest about what has been on my mind and heart heavily recently, it is D-day.  That is, diagnosis day.  I know for many CDH and CHD families, the day they received their child’s diagnosis was the day their lives irrevocably changed.  There are many big moments that follow of course.  The evaluations, the birth, the surgery.  Huge, monumental things.  But you see a lot of that coming.  The diagnosis, for me, was the truest changing point in my life.  Aside from perhaps Beckett’s actual death.

It’s on my mind a lot because I feel a sense of deja vu as we draw near to the date that Beckett’s diagnosis happened; March 23rd, 2016.  I am surrounded by reminders of what life was like one year ago, as I stood on the cusp of everything changing.  I was so happy, and sure.  I am still happy, but much less sure, of many things.  And what was a lighthearted joy at being Beckett’s mother then is now a much more complicated combination of feelings.

The day of Beckett’s diagnosis was actually the first time I had even considered that there could be a problem with my baby.  Life is ironic.  I had worried endlessly throughout my entire pregnancy with Moira about birth defects and disasters befalling my infant.  When I was pregnant with Beckett, my confidence was based in having done it before and had simple success.  I felt providence in my life.  A little universe we loved that was all our own, and I was carrying the perfect puzzle piece to complete the picture.  But I was about to learn that actually the creation of life is not a success that is simple at all.  There is a lot of room for error.  That sometimes you walk in for what you think will be a routine visit with your doctor and four months later you find yourself lying awake in the Ronald McDonald House, hugely pregnant in a place not your own, as the highway traffic of interstate 225 and your mind race.

What I think about a lot recently is that diagnosis happen every day.  That people are funneling on to this path with me at all times.  April is CDH awareness month and when Beckett’s diagnosis happened in late March, I felt bombarded by the information swirling through my webspace a few weeks in.  Successes and often times failures.  Now in the face of the worst having already happened, I can acknowledge that I was scouring from Beckett’s diagnosis until the day he was born for some kind of get-out-of-jail-free card.  A light at the end of the tunnel.  But no matter how high or low I searched, the truth was always the same.  This was a serious diagnosis.  His markers weren’t good.  Half of them die.

I would cling to the positive numbers from whatever studies I could.  I held it together and soldiered forward.  Optimism became the only antidote to my anxiety.  But through each meditation session and every doctors appointment with some sliver of good news, it hovered in my mind.  “Is he going to die?”  With every pulse in my wrist, that question.  It was there until December, when I laid the question and my son both to rest.  Yes.  He would.

To the mother or the father who just got this diagnosis today, I am so sorry.  And knowing what you are going through breaks my heart for you.  Worse yet, that now my story is like the ones I turned away from in my own darkest moments.  I was scared.  What if that was my child’s fate too?  What if I was to face existence as a bereaved parent?  But now that I am, I know that this is not so terrible as I had feared.  It is terrible, but my imaginings were worse.  My heart hurts, always, for my baby.  And in the worst times, it is unbearable.  Or so it seems.  But then it apparently must not be, for bear it I do.  I bear it, and I rise from it.  I look around and feel the luck in my day.  Feel the majesty of what good has unfolded as well.  My son has already come and gone due to this terrible affliction, as so many had before him and will after him.  But he was here, in my arms.  And to have had the honor of meeting him is worth the hurt.  It feels lucky even.

I am sorry for every family who is getting a terrible diagnosis today.  I am sorry that now your life is new, and not in a better way.  That you cannot now make your way back to the life you had before.  You will miss it, and often.  I am sorry there is not more to do to save your very loved son or daughter, and I am sorry for everything your family will have to give up now that this diagnosis has happened in your life.  But a year later from a day like that myself, I remind you that the diagnosis is a singular day.  Only one day in the lifetime of the person you love.  I encourage you to embrace as many of the other days as you can, within the womb and beyond.  Beckett really was the perfect puzzle piece.  What I didn’t foresee is that his piece would not be a corner, but instead one that allowed openings for new pieces.  I can’t see the new image clearly yet.  But I understand that he is the gateway to a new picture for my life.