The Other Side of the Coin

Tomorrow is Verity’s first birthday! Tomorrow we celebrate having her with us for a whole year. Other first birthdays have come and gone, but this one—pardon the pun—takes the cake! When we learned Verity’s diagnosis, I thought I would be planning for a funeral. Never did it cross my mind in the weeks following that awful phone call that maybe, just maybe, we would someday be printing invitations and buying streamers and looking at cake ideas for her first birthday party.

There is another side to this coin, however, and I want to share a quick glimpse at the life of another Trisomy 18 girl named Nori. Here she is—isn’t she a doll?

Verity and Nori are birthday buddies! Both girls will turn 1 tomorrow! I’ve only recently begun to get to know Nori’s sweet mama, who lives over a thousand miles away. And though our daughters share a birthday and the same diagnosis, their stories are so incredibly different.

Verity spent 18 days in the NICU. Nori is still waiting to go home!

Verity has had 2 surgeries (tenotomy and g-tube). Nori has had 4, including open heart surgery.

Verity’s biggest problems seem to be GI related. Nori has a trach, has endured chemo, and is now cancer free! (I know, right?! She is INCREDIBLE!)

Two Trisomy 18 families; two very different stories. I am so thankful that sweet Nori is doing all right (although suffering some minor setbacks that keep delaying her from going HOME), but there is no denying that she, her parents, and her siblings have had a much more difficult road than we have traveled with Verity. (To read more, please see the fundraiser page a friend has set up for them.)

But…both girls are alive. They’ve beaten so many odds, and they will celebrate a huge milestone tomorrow.

And that—that is really the other side of the Trisomy 18 coin, the fact that we celebrate what so many cannot.

I can’t deny that as excited as I am to sing “Happy Birthday” to Verity tomorrow (and again at her party on Saturday), there is a tinge of sadness that I just can’t shake. I now know too many mamas who will never get to wish their babes a happy first birthday—or perhaps even another birthday. I know too many mamas who didn’t even get to meet their little ones alive. I ache for the parents who aren't sure if they really made the right decisions, for the siblings who don’t understand why they can’t kiss baby brother or sister one more time.

And honestly? I don't understand it either. Why do our babies live and others don't? 

Sometimes we hear well-intentioned sentiments. 

"She is so loved! That's why she's doing so well." But...other children were (and still are) loved.

"So many people have been praying!" Well, I'm sure people prayed for the children who passed, too. (I myself have prayed fervently for little ones who didn't make it.)

"God has special plans for this girl." Yes, just like He has plans for all children...but some plans clearly include welcoming little ones to heaven before their parents.

Do you see the dilemma? On the one hand, so much to be thankful for, so much joy and hope. On the other hand, such sorrow as I cannot—simply cannot—wrap my head around, for I have not (yet) been called upon to walk that road. (Jesus, be merciful...help me whenever that time must come.)

I suppose that in a sense, I am still living in a cloud of uncertainty much like during the pregnancy with Verity. Tomorrow isn't guaranteed for any of us. Yet with 364 days behind us, life with our little girl is, quite simply, Today. 

Today...I will take care of you as best as I know how.

Today...I will hold you close.

Today...I will thank God for the gift of you.

Today...I will love you with all that I am.

For everything there is a season, and a time for every matter under heaven...Ecclesiastes 3:1

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:24