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

A Year of Firsts

It's been quite a year. Though we've experienced many firsts in our years of parenting, our adventure with Verity has found us swinging between typical baby firsts on the one hand and...on the other hand...utterly foreign firsts which have somehow turned into our new normal. And while we have yet to see Verity reach certain milestones that our other babies may have reached or even surpassed by their first birthdays, the fact remains: we cherish and treasure each FIRST from this past year.

The first time we saw our tiny babe and heard her little cry...

The first time one of our babies went from birthing room to NICU...

The first moment her brothers and sisters met Verity...

Our first experience with a feeding tube...

Our first night at home with a myriad of cords and machines...

Our first trip with Verity to the ER...

Verity's first church service (which also happened to be her dedication)...

Her first casts...

Her first Easter...

Her first surgery...

Her first GI tests...

Her first boots and bar (soon followed by her first therapy sessions)...

Her first smiles (at 4 months old)...

Her first Fourth of July...

Her first move...

Her first Thanksgiving...

Her first sleep study...

Her first Christmas...

Her first New Year...

Her first Valentine's Day...

And soon...very soon...on February 28, her very first birthday...

Verity, you are the FIRST baby we have had the privilege of experiencing such a roller coaster of a first year with! You have taught us so much, sweet girl. I know I'm not the first person to say this, but you have touched more lives in your short time on earth than you can ever know. We will treasure each and every FIRST the Lord our God gives us with you.

We love because He first loved us...1 John 4:19.

Living the IF

A year ago I felt the weight of my heavy pregnant body a little bit less than the weight of the uncertainty and dread that had been pressing on me ever since Verity's prenatal diagnosis. As much as I tried to be hopeful and faith-full, the unknown stole so much joy from those final weeks of waiting for the arrival of our sweet baby, a precious little girl whose very existence brought more ambiguity than any other anticipated event of our lives.

At the same time, I couldn't help but be grateful that we did receive Verity's diagnosis early, even though a prenatal diagnosis can sometimes actually be detrimental. The last few months of my pregnancy allowed me to research and prepare myself and my family for some of those "What ifs" that lay ahead of us:

What IF our baby actually lives instead of dies?
What IF we bring her home from the hospital?
What IF we go from parenting 8 healthy kids to adding one more...with special needs?

What in the world would that look like??

Well...what does our life look like now?! Because we are living the IF.

Our baby IS alive. We DID bring her home from the hospital. We now have NINE children...and yes, one of them has special needs!

So what does our life look like?

It looks like bottles and pump parts in and around the sink, waiting to be washed or drip drying on the rack.
It looks like once-unfamiliar equipment (feeding pump, pulse oximeter, suction machine) being part of daily life.
It looks like an impressive binder and filing system to hold never-ending medical paperwork.
It looks like therapy sessions twice a week and specialty appointments several times a month.
It looks like parents falling asleep in the middle of meetings and movies.
It looks like brothers and sisters coming and going, kissing Verity, playing with her, singing to her.
It looks like jumping up and down when Verity gains a few ounces or reaches for a toy.
It looks like cuddle sessions instead of the "shoulds:" I "should" be cleaning; I "should" be working; I "should" be prepping dinner.

It looks like love
and laughter
and living in the moment
and appreciating the little things.

And yes...sometimes it looks like tears
and tantrums
and turmoil
and terrifying moments.

I can't lie: this isn't an easy life. It's not what we would have chosen. But it IS what we choose now, over and over, day after day. "Living the if" has changed our lives for the better. "Living the if" means living in the grace and strength of a God who created Verity perfectly, whose plans and purposes reach far beyond our comfort zone. "Living the if" keeps us humbly walking in the path of Christ, who allowed Himself to be broken and poured out on our behalf.

I suppose it wouldn't be entirely honest to close there, because, as you might imagine, our present day reality doesn't mean that we don't still live with a different set of "What ifs." And the truth is, I still wrestle with the reality that "Living the IF" for our family means something entirely different than many other Trisomy families have experienced. But...for now...I choose to focus on the celebration of life in this, Verity's birthday month, and instead will save that topic for another day.

Random Tidbits

So much happening these days!

* Verity is 11 MONTHS OLD! That means we are on a huge countdown to her first birthday and party! Her actual birthday is February 28, but we will celebrate with an open-house-style party on March 3. Yikes! Only 4 weeks to plan this extremely special birthday celebration!

* We missed our nurse Margie this past week but are happy for her to get a work-from-home job. She did agree to come help us out now and then so Ted and I can sneak away for a date afternoon. (Dates are extremely hard to come by these days...)

* An LPN came Wednesday and Thursday to help fill in since her kiddo was in the hospital. She was very sweet and adored playing with Verity. So we did get some schoolwork done after all.

* We interviewed a new nurse who will start full time on Monday. It seems like a good set-up...praying that all goes well as we transition next week. Margie set the bar high!!!

* We also interviewed a night nurse who will start NEXT weekend working Sunday and Monday nights. Two nights of sleep IN A ROW!! I love this lady and am so excited to have her help with Verity. She is someone who is a kindred spirit to me in many, many ways.

* Verity is reaching for toys and rolling, not completely all the way, but definitely rolling back and forth and has managed to roll from tummy to side several times. (We usually have to position her arms for her to do this.)

* Nights continue to be difficult, although we had a "good" night Tuesday, only waking 3 times.

* Verity is growing like a weed! Some of her pants/jammies are getting too short! We haven't weighed or measured her since January 22, but at that point she was 13 pounds, 4.1 ounces and 62 cm long (just over 2 feet).

* Pretty sure she is teething, although we've said that for a few months now. She doesn't yet have any teeth, but this past week she has been a drool monster and loves having her gums rubbed! I don't know that she's really been any more fussy than usual, though.

* We are making gains with her head control, and with her body growth has come a sturdiness that wasn't there before. Her once tightly clenched fists are so much looser, but she still holds her hands in the fisted position, though her fingers do wiggle quite a bit.

* Here you can see Verity sitting in Rhema's high chair like a big girl! She can't tolerate this for TOO long yet, but it's so fun to have her UP close to us at the table instead of down in her seat on the floor!

* This is a Squiggle Mat, a special needs item that our secondary insurance will cover. It will take up to 2 months to actually get it, but Verity will be able to use it for quite some time. The in-home therapist and equipment specialist brought it in last week to see if it was something that would work for us. And the answer is definitely YES!

* All in all, I think you can see that this little girl is most certainly compatible with LIFE! We are in awe at how far we have come over the last year. It has been, undoubtedly, the hardest year of our lives, but here we are, caring for a baby who had a 10% chance of reaching her first birthday. Stay tuned for more posts as we continue the countdown to ONE YEAR OLD!