Wow. That was further on the sweet side of the bittersweet-spectrum than I'd expected.
As lame as I feel admitting this, I've had my heart set on this crib for, like, over a year. Yes, I know… over a year ago we were not even trying to have a baby yet. But I am now and forever will be a planner… and that's a good thing, because I will also probably forever have expensive taste. It is not at all that I only like things because they're pricey, it just always ends up working out that the things I like happen to be pricey. I found a crib on Restoration Hardware Baby & Child's website at some point during the fall of 2012 and fell in love instantly… I fell hard. And then I saw the price and thought: In my dreams… When we finally got pregnant, I began searching for alternatives. But nothing made me swoon like the Jourdan Conversion Crib. It was sturdy, well-built, versatile, gender-neutral and had a mature, old-world craftsmanship aesthetic. Nothing else compared and our families could tell we were smitten. Both set of our parents, as well as several grandparents, aunts and uncles collaborated together and on Christmas day we were thrilled to discover that we'd be blessed with nearly the entire cost of our dream-crib covered by generous cash-gifts! The day after Christmas, the crib even went on sale… We jumped at the chance and ordered it, and were even able to afford to purchase the toddler-bed conversion kit in addition so it could be used in 3 ways throughout the next 10 years or so of growing our family: as a crib, toddler-bed, and a full-size headboard! We were… and still are… so beyond blessed by this abundant generosity to have been able to afford this for Avonlea.
About 24 hours after we placed the order for the crib, we received the dreaded phone-call that Avonlea had been diagnosed with Trisomy 13. It didn't hit me until our families came over to hear the news that all of their generosity had just been put towards a crib for a baby who would probably never sleep in it. Over the next few days of processing, we were faced with all kinds of questions: do we still paint her room? Keep the crib? Do we still allow friends and family to throw us baby showers (we had 3 in the works)? Do we keep the little things we'd been collecting here and there, picked out just for her?
Our initial reaction was to just shut it all down. Nesting should be a joyous process, and you only get to really, truly "nest" once- for your first baby… when you're expecting a second or third baby, you already have a lot of the things you will need from when you had your first one, right? I mean, you can still decorate and register for a few things if baby #2 is a different gender than baby #1, but generally you don't go picking out furniture all over again, or selecting things like high-chairs or car-seats, or throw yourself nearly as in-depth into the nesting process as you did the first go-'round. And besides, unless The Lord decides to work a miracle of biblical proportions, the chances of Avonlea ever making it home are so slim… even if she survives birth or lives longer than a few hours or days, she will most likely never leave the NICU. We figured that, ultimately, it would not be healthy for us to continue on with the nesting process... If the odds and statistics take her, we'd just have to come home to a beautiful, empty nursery.
When Restoration Hardware called to schedule the crib's delivery, we decided to keep the crib; we figured we'd just leave it unassembled. We did decide to go ahead and paint, but mostly because there were already sample-colors painted in small patches on the walls of her room, and leaving things that way seemed even sadder than covering them up. We called off our baby showers because those are supposed to be times of celebration. For us, they would probably only be time spent surrounded by pity-faces and awkwardness. We vacuum-sealed the sweet little outfits and things we had accumulated for her in storage bags and put them away in a box in her closet. We didn't want to continue to delve into nesting, only to blemish everything attached to the process with sad memories.
We stayed in on New Years' Eve to paint her room with my parents. Brian's mom had given us a beautiful gilded antique mirror that we'd planned to hang over her dresser, and we went ahead and hung that up because, well, above her dresser was the only space we had to put it. The plan was to keep the room a guest-bedroom, and keep Avonlea's things in the closet and attic so they wouldn't be taunting us if we end up losing her.
But then, last night, her crib arrived and all of the pieces just looked so beautiful… Setup was included with the delivery charge, and until then we had figured we'd just tell the delivery guy not to bother setting it up after he brought all the pieces upstairs. But we didn't tell him… the words just never came. Brian even helped the guy put it together (not gonna lie, Restoration Hardware gets major points for user-friendly assembly).
Dare we? We dared.
We caved and put her crib-skirt and bumper in the crib, hung her lace curtain in the window, and placed a few accessories on her dresser/ changing-table and nightstand. We even laid her stuffed giraffe in her crib that my parents had given us after we announced we were expecting. The room was all of a sudden a nursery… her nursery… her room. Well how did THIS happen?
I pulled one little article of clothing out, and left it on her dresser/ changing table as a reminder of hope: a little infant monster-hat. For Christmas 2012, one of my gifts to Brian was this little hat (along with a pair of baby hiking boots). We had already planned to start trying for a baby in 2013, so it was appropriate (Brian gave me an antique locket with spaces for 4 photos inside; he filled 3 of the spaces with pictures of each of our dogs, and left the last one blank, for our future baby). The sweet little monster-hat reminds me of the desire God gave us for Avonlea before she was even conceived, and that He would not have given us that desire just to take her away out of cruelty. He will carry this work to completion.
But right now, at this moment, Avonlea is alive. She is kicking and twisting around within my body, full of life. She deserves the same amount of respect and celebration any other child would receive, and a room to call her own helps us feel like we're giving her that in some way.
This morning, we had an appointment with Angela, the genetic counselor who'd called us with the diagnosis a week ago, She showed us photos of Avonlea's trisomy, the extra 13th chromosome in her little cells that's killing her. She gave us lots of pamphlets… gee, thanks. She asked intense questions about our family histories, drew an extensive diagram and advised us on specific tests each of us should have done based on that to see if we could be carriers for other chromosomal issues in the future. She agrees with our perinatologist, Dr. Shaver, that neither of us are carriers of Trisomy 13 and that Avonlea's case is just "one of those things."
Overall, the hour+ consultation went how I expected it to… utterly depressing. The genetic counselor and our doctors keep saying things like "when she dies," "when she passes away…" It is incredibly difficult to choose hope in the midst of their morbid certainty. She is OUR daughter; we have a responsibility to fight for her! Stop acting like she's already gone… Yes, we want to have realistic expectations. No, we don't want to live in denial or saunter by on false hope.
But we have a real hope. A true hope. We have Jesus.
Jesus is not a false hope.
He is our perfect hope!
And as long as we belong to the author and sustainer of all life, we simply cannot proceed as if all hope is lost, as if what the doctors define as "impossible," is actually not possible in Him.
He could heal her. She could live.
If He does not heal her, this doesn't make Him any less powerful, or less good. It doesn't mean science wins over God. It won't turn us into atheists or give Satan a victory- God will still be sovereign, and He will still be our savior.
But our continual, daily, desperate prayer is that God will heal her. We beg Him for her life every day. We praise Him for her and the time we've had with her thus far, and for (up until now) a fun and joy-filled pregnancy. We plead with Him to work an awesome miracle in and through Avonlea.
After our appointment with the genetic counselor, we had a 3D ultrasound. We were so nervous… I was an emotional wreck the entire hour leading up to the appointment, especially after the morning we'd just had. Dr. Shaver (the perinatologist who talked us through Avonlea's diagnosis the other day) as well as Dr. Clarke (our OB) have both said that it appears from Avonlea's 2D ultrasounds that she is not exhibiting the physical and facial deformities that are common in Trisomy 13 babies (cleft palette/ lip, eyes fused together in the middle, eyes in the wrong location, single-nostrils, missing or extra digits, and clubbed hands/feet). It was a relief to have heard this, for some reason… I think mostly because it let us believe that if we lost her, we'd remember her the way we'd dreamt her up in our minds over the last 7 months.
But the closer and closer we got to the 3D ultrasound, where we'd hopefully be able to really see her, the more frightened I became that we would see something wrong with her. All of my hopes and expectations for my daughter had been snatched from me over the last 7 days. We will probably never get to walk into her room and see her smiling at us from her crib, soothe upset tummies or calm her after bad dreams. It is most likely that I will never get to hold her through her first heartbreak, and that Brian will never get to walk her down the aisle on her wedding-day. But if I could just have one thing, one memory of beauty from her… at least that'd be something. Something about her that isn't marred by sickness.
This girl… of course… put up quite the fight throughout most of the ultrasound. It'd taken 4 ultrasounds to confirm her gender between September and November, and nearly an hour at the perinatologist's office the other week for her position herself so that the doctor could see her heart. Henceforth, the fact that her face was turned towards my back and the fact that she was holding her feet over her face did not surprise us a bit. We did take the opportunity to count most of her fingers and toes… 5 toes on each foot and 5 fingers on one of her hands (her other hand was hiding). When she refused to show us her face for over 20 minutes, the tech had me try drinking something with a little caffeine in it… to no avail. Then she tried having me walk around, and then we tried me holding a position on all fours in attempts to convince Avonlea to re-situate herself. Nothing worked…
The ultrasound tech told us that we could come back another day and try again since we didn't get to see her face. We'd told her about Avonlea's diagnosis before the ultrasound, and braced her that we may see some things that made us sad… But, we told her, today may be the only opportunity we ever have to see our baby girl before she slips away. The tech understood how important this was for us… Once we'd agreed to reschedule, I started to tear up.
I want to see our daughter. So badly… I want to see her alive, and what if her heart stops beating tonight?
What if this is our only chance?
The tech decided to try one more time… she pushed on my belly in several places in one final attempt to coax Avonlea into moving her legs and hand away from her face and it seemed to work! But then… the umbilical cord moved over part of her face. Grrrr…. Thankfully, she moved her head just enough for us to see her profile and the complete left side of her face! She even opened her eyes…
Brian and I both lost it. She's perfect. Completely beautiful….
We got a couple of really good shots, but since we'd already arranged with the tech to come back next week at no charge, she had us just pick one for today to print out. Brian's selection for the print surprised me a little because in this particular shot, there's a shadow on her face (that does not appear in other shots) that sort of makes her look like she has a cleft lip. But it is the sharpest one and her are eyes open!
The ultrasound tech also told us she has lots of hair, and that she has long eyelashes (that, she gets from me).
...She's so pretty. Why does she have to be sick? It's so unfair.
Her beauty doesn't necessarily help us deal with or accept her terminal diagnosis any better, but it is at least comforting to know that if the Lord's plan is to take her from us, our memories of her will be beautiful… that she is a beautiful part of us. The fact that she looks like us will help us feel like she was ours, even if only for a little while.
We love her so much. We cannot get over her right now…
This simple image has given us a renewed zeal to pray without ceasing for her complete healing.
Lord, Jesus… we are broken for our daughter. We are hurt, and confused and unable to stomach the terrifying possibilities that lie ahead for our future. We love you, and trust you, that you have a plan for all of this to work itself out for your glory and our good. But we ache for Avonlea. She has been one of the truest desires of our hearts since long before she was conceived. We have shared so much joy over her since the moment we learned she existed… please don't take her from us now. We beg you to save her- save her soul, and save her feeble body. Touch her and breathe compatibility with life into her… please Lord. Restore her, cell by cell. Take away this Trisomy 13. Heal our baby… Your baby. We are on our knees for her life, and in the name of Jesus we pray for a miracle. We love you, Father. And no matter how you work this out, we thank you for Avonlea and for what you're going to do through her life, or even through her death. Amen.
The sun comes up; it's a new day dawning
It's time to sing Your song again
Whatever may pass and whatever lies before me
Let me be singing when the evening comes
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I worship Your holy name
***PLEASE POST YOUR PRAYER(S) FOR AVONLEA IN THE COMMENTS BELOW.
WE APPRECIATE YOU AS YOU STAND WITH US IN FAITH***