To My Daughter Hope Marie

To Hope Marie

I’ll confess up front, this is a different kind of a letter than the one I wrote your sister Rebecca a couple days ago—it’s more like an epistle.  How do I address the daughter I can’t see in the flesh?  You also celebrated your tenth birthday on May 2, but unlike your sister, we had no party, no cake, no pictures, to mark the passing of your milestone.  Hardly anyone, besides us, even mentions your name without prompting.  A vague shadow of your presence remains; it hovers over us, reminding us that someone is missing from this birthday celebration, and from every family celebration—and always will be.  We try to ignore the shadow as best we can, and focus on the light, but there’s no way to deny its presence completely. Sadly, all that we have that reminds us of your physical body are a few precious photographs of you in the NICU at Johns Hopkins, with your tiny body covered in tubes and wires. But a father never forgets his daughter; you live on in my memories. And so, on the tenth anniversary of your passing from life support to life eternal, I look back and reflect on the events that culminated in those 48 hours that changed me forever.  I wrote my thoughts down in a letter to you; although it seems maybe I wrote it for me, as much as for you.

I’ll certainly never forget all we did to make your life possible.  We wanted your brother Brady Benjamin to have a sibling.  Your mom had to go through IVF to have children, which was not easy for her.  Multiples can happen when one does IVF. It’s the risk one takes when multiple embryos are implanted, but this is what our reproductive endocrinologist recommended we do to give us the best chance to get pregnant. Our first IVF cycle resulted in only two embryos.  We’d implanted them both, and ended up pregnant with one child—your brother Brady.  So, in the end, after we prayed about how many embryos to transfer, we decided on two.  And this time we ended up with twins…  But here’s the thing, you and your sister were identical, which means you both came from the same embryo. I guess it goes to show, despite our human efforts to limit and control nature, God can still find a way if God desires.

After the initial shock of finding we were going to have twins wore off, we did our best to prepare, and everything seemed to be going well. The concern for identical twins that share a placenta, but have separate amniotic sacs, the way you and your sister did, is a condition called twin-to-twin transfusion (TTTF).  As I understand it, an imbalance in blood-flow between the babies develops during pregnancy, causing one twin to grow faster than the other, and placing both twins in jeopardy if not corrected—which is difficult and risky.  To guard against this concern, we had both your mom’s regular obstetrician and a perinatologist monitor you all constantly throughout her pregnancy. All seemed to go according to plan; the pregnancy went 35 weeks—which is considered full-term for twins. We went to the hospital that morning expecting to bring both you and your sister home.  The doctors had the same expectation; two bassinets were set up in our room at the hospital to receive our bundles of joy. The Noah’s Ark-themed nursery was ready at home, with two cribs set up. While we weren’t sure how to handle three children in the midst of our busy life, we trusted we would find our way, and tried to welcome the double blessing God had for it.

But of course, life had other plans.  It was anything but a routine delivery. On the outside you both looked perfect, identical copies of one another.  But it became evident almost from the moment of your birth, two minutes before your sister Rebecca, that on the inside, you were not well.  Subsequent scans revealed you had suffered catastrophic brain injury (essentially a stroke) sometime before birth. We will never know for sure—but medical science’s best guess is that, despite all that monitoring, TTTF was to blame.  You were the dominant twin, meaning you robbed blood from your sister, the donor twin, but in an ironic twist, this “dominance” placed you at greater risk for problems in utero.  You came out ruddy, almost purple, while your sister came out pale and anemic. It was almost a Jacob and Esau scenario, only you two were identical.  Rebecca spent a few days in the NICU, and then came home; you never came home.  

After two surreal days coming to grips with what was happening, your mom and I made the decision to remove life support. It was an excruciating choice for us, but to this day we believe it was the merciful choice for you.  I can only hope you understand. We didn’t want to see you suffer, darling Hope. Your quality of life would have been nil.  Loud, rattling, mechanical lungs breathed for you, but you never cried, you never opened your beautiful eyes.  Some of the best doctors in the world cared for you at Johns Hopkins.  They wouldn’t come out and say it, but your mother and I could read between the lines:  the likelihood was you were soon going to die, despite the medical science’s efforts to keep you alive.  If we had any doubts, the brain scans told us what remained unspoken.  Your beautiful body was but a shell.  Your spirit deserved to be free of those limits.  And we trust that it is as I write these words. We believe you now inhabit a new “body” free of the limitations of this life.

Ten years later, I remember all this like it was yesterday—and, most of all, I remember you. Maybe I go through a day or two not thinking of you consciously, but one never “gets over” the loss of a child. I have, however, moved on with living.  From early on we determined we would focus on life.  After all, we had your newborn sister to care for, and your brother was still a toddler, so those were pretty big motivators for us.  They forced us to focus on living when, some days, we would’ve rather curled up in the fetal position and cried. 

We’ve always tried to make sure that we remember you, and let your brother and sister know you were an important part of our story. We visit the place you are buried—and where your mom and I will one day rest—a few times a year, and always on this day (May 4), which we call Hope Day.  I this practice has been especially important for your sister, who has always been aware of your presence.  It’s been said identical twins have a special bond, and while I can’t claim to understand it, I think I am seeing it lived out. In some mysterious way, it seems to transcend the veil between heaven and earth. Becca has been feeling sad recently because you aren’t here, with her.  She clearly misses your presence. She even named a baby she received for her birthday Hope. We told her you would not want her to be sad. I think she understands that, but she still wishes you both could be having a birthday party together.  So do I.  

I too miss your physical presence in our life, Hope, but more than that, I miss what we don’t get to experience together.  In the face of Rebecca, we always see Hope; we see what you would have been physically as you grew.  However, unlike Rebecca, we don’t get to experience you as an individual or as your sister’s twin.  How would you and your sister have been the same?  How would you two have been different?  How would you have interacted with your brother? Would you and your sister have tried to pull the old “switcheroo” on your brother, or your parents at some point? As we watch your sister grow into a young woman, we grieve not only the earthly life you were denied, but also the experiences we all were denied because you didn’t live.  For example, someday, Lord willing, I will walk Rebecca down the aisle on her wedding day. I will never get that chance with you. Indeed, I think the whole world lost something because we lost our Hope.  

It’s funny the things that remind me of what I didn’t have a chance to experience.  I see a healthy set of twins with their parents, and I feel the tinge of envy for the experiences I was denied.  I want to stop them on the spot and interview them about what it’s like to have these two identical individuals living in their house.  And maybe it’s just because we’ve lost a twin, but gosh, it seems like multiple babies grow on trees.  I’ve seen more than one set of identical twins in the same place on more than one occasion.  I think: What is this God, sarcasm?

Sometimes I literally feel the missing weight of your presence.  Just the other night, for example, I was walking into the movie theater with Rebecca to see Infinity War.  As she often does (at least she still does it for now) she took my hand as we walked across the parking lot.  For an instance, I was aware of a weight imbalance.  I realized in that moment, had you lived, I would have a daughter pulling on both arms.  I wonder what that would have been like? 

How do I close a letter to the daughter not with me? This writer has tried to say something, but I feel like words always fall short of all this experience was—and still is.  I think what I most want to say is that your life—though it was brief—mattered immensely to us, and to many.  While I don’t believe God causes tragedies to happen,  I do think God uses all things for the good of those who love God.  I would never have chosen to lose my precious daughter.  Nevertheless, because I lost you, I experienced growth that might not have happened if you had lived. 

Who can say if I've been changed for the better
But because I knew you.
I have been changed for good.

—“For Good”, Idina Menzel

Thank you, my darling Hope, for the “handprints you left on my heart”.  Happy Hope Day.

LOVE, 

DADDY