1 Corinthians 15:53 For this perishable body must put on the imperishable, and this mortal body must put on immortality. 54 When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written: “Death is swallowed up in victory.” 55 “O death, where is your victory? O death, where is your sting?”
I had to look up words like macabre and morbid again to see if giving you small glimpses into Bella’s final moments with us fell into either of those categories. Macabre is defined by
1.gruesome and horrifying; ghastly; horrible, and 2.of, pertaining to, dealing with, or representing death, esp. its grimmer or uglier aspect.
Morbid shares some of those same connotations. These few pictures we’d like to share with you do represent her death, but as to whether they picture something grim, gruesome, ugly, or ghastly, we’ve concluded they certainly do not. Unlike the Gnostics of centuries past, or even those since who see the body as of lesser value than the soul, we believe firmly in the sanctity of the body, the intrinsic dignity it possesses by virtue of its origin in the mind and will of God. We cherish what is of flesh for obvious reasons: it was God who made this flesh; it was God who came in the flesh; and it will be God who resurrects our decayed flesh when He comes again. So whether this flesh is approaching death or has crossed over into death, that flesh is still of such import, magnificence, and beauty that to conceal it entirely from those of you who’ve come to love our Bella, though you have never seen her apart from her shadowy, in-utero images, seems a kind of deprivation—a diminishment of this particular body’s wondrousness.
They are some of the most intimate pictures we can imagine and that is why we feel it necessary to preface them with words of introduction and context. They include our holding her when the attempt to wean her from the ventilator had failed and we began to come to terms with the fact that she would not endure much longer; when we baptized her in the NICU; when our whole family said their earliest goodbyes to her; and when we had to say some of our final goodbyes. Her body was flawed and frail—as all our bodies are to a greater or lesser degree—but it was and is beautiful to us. We suspect that you will find her as beautiful as we have. Unlike other displays of the body that try to take a whimsical, and thus a de-contextualized look at death (remember the traveling exhibition of Bodyworks?), these images are as much in context as they can be. They conceal neither our sadness at her departure nor our thanksgiving at having had the time with her that we did. They reveal the frustration to which our bodies have been subjected and the majesty with which they’ve been endowed and still retain. They are a visual lament and celebration of this body.
There is a song we’d heard in concert last month from one folksinger we’ve mentioned before in these pages: David Wilcox. Hearing this song again, now having had to realize that Bella could not stay with us–well when you read and hear these lyrics, you may think, as we have, that they were crafted for Bella. In point of fact, David Wilcox wrote this song about hope. He just didn’t know it was about our Hope, our Isabella Hope.
[odeo=http://studio.odeo.com/audio/17588923]
The night I saw her dancing
She moved in liquid music
Like every song that moved us
Was the music of her soul
And waking up at sunrise
With the sunlight through her window
I pulled aside the curtain
Far away from home
When she danced
She knew the music
Like the waving of a wheat field
Gives the hidden wind away
So I’m so grateful for her beauty
And I knew she could not stay
Just the fragrance of her memory
In the satin and the velvet
Time split through a prism
And I knew that she was gone
But I found the note she’d written
If my heart could dare to trust her
Through the journey in the darkness
She’d be with me in the dawn
When she danced
The music knew her
Like the instruments were listening
To the motion that she played
I’m so grateful for her beauty
And I knew she could not stay
So I stepped out on the sidewalk
And I closed the door behind me
Following a fragrance
That was carried on the wind
And I knew I’d never reach her
‘Cause the starlight was the distance
But I knew that right beside me
Was where she’d always been
Now when we dance
She moves right through me
I know love is coming to me
From the promise that she gave
So I’m so grateful for her beauty
‘Cause it made my heart so brave
We’ve sprinkled our thanks to you throughout our telling of Bella’s story, but we think it’s time to make time for a more focused thanks–even if what we can say can’t possibly begin to say enough.
To all of you–whether you’re near to us here in Dallas, or whether you peeked in from places we’ve never been to or even heard of–we are so humbled and thankful for your innumerable displays of affection, support, and encouragement. To those who sent postcards to Bella, please know a dear friend was kind to assemble them in a sweetly arranged scrapbook. They elicit tears when we review them, but they are so very precious to us.
Jesus’ admonition near the end of His Sermon on the Mount has never been the truer for us: Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. Each day has its own responsibilities, its own burdens. Grief is work. To think long-term is too much. But it’s not putting on a brave face for us to say that we have experienced that thing called “consolation” in these several days since we buried our Bella. The cold wind of sorrow has been tempered by the warmth of knowing she continues, and is more alive than she ever has been–more alive than any of us who still walk this earth. It warms us also to reflect on the many mercies attendant to her last hours. And, finally, it warms us to remember how surrounded we have been by you all. Your repeated inquiries into our condition, your kind notes of sympathy–many from you whose faces we’ve never seen or whose hands we’ve never held–your unremitting aid to our family–all these acts of lovingkindness have had the effect they were designed to have. The strength we have needed has been in large part supplied by you.
As I said at her funeral, this Christmas has been the clearest yet (of which I hope to share more later). In short, when all the impetus to engage all the trappings of the season evaporates, and you’re left to see and think of what Christmas means in its raw essence, there is a truer, purer, more enduring comfort to be had. The sentimental wistfulness you might feel at shelving all the paraphernalia–the decorations, cards, finery–now seems like such wasted emotion when what we’re meant to feel and focus upon is what His incarnation, death, and resurrection signify: there’s always reason for hope because in Him is the hope of–among many things–consolation and, as He says unequivocally, continuation in unmitigated fellowship with Him following our final breath.
Your love throughout these months, and especially in these last several weeks, has only served to heighten what we regard to be, as we’ve said, our clearest Christmas yet.
In the days to come, we’d like to share with you a few pictures of some of the short time we had with Bella. We feel that in a way you are as much her family as we are. To share a few glimpses of her seems only fitting, even if what they portray is bittersweet.
Our cup runneth over. Surely goodness and mercy have followed us through you all the days of her life.
Patrick, Christy, Seamus and Savannah
Ecclesiastes 7:2 It is better to go to a funeral than a feast. For death is the destiny of every person, and the living should take this to heart. 3 Sorrow is better than laughter, because sober reflection is good for the heart. 4 The heart of the wise is in the house of mourning, but the heart of fools is in the house of merrymaking.
It was but another mercy you all showed us yesterday in being with us in our grief. Thank you.
Words for Bella
A gift from her daddy on the day of her service of hopeful mourning
When first we saw you in veiled mist
Our eyes did squint, “Could it be this?”
We’d never dreamed you’d come our way
Surprising us to break forth one day
We watched you grow; we drew our dreams
A vision of trio in our eyes did gleam
And then a stare, a pause perplexed
What could it be, inside we vexed Read the rest of this entry »
Isabella Hope Alexandra Lafferty went on ahead of us, into the Presence, this afternoon around 1:30, in her daddy’s arms, surrounded by her mother and big brother and sister, and other dear admirers. Her big brother Seamus got a chance to hold his little sister before she died.
The mysteries surrounding all her afflictions found their answer in the chromosomal defect called Trisomy 18. Her heart, brain and lungs had been so compromised that she could not support herself. Her beautiful little body just could not do what bodies need to do to live.
We’ve scheduled the funeral service at Park Cities Presbyterian Church, 4124 Oak Lawn Ave, at 1:00pm, Friday, the 21st.
To all of you who have accompanied us on this leg of Isabella’s journey, words fail us presently. For now, thank you. We love you so.
She was truly a miracle and a mystery. We will miss her so. Our hearts grieve… not because she is in her Father’s arms, but because our arms are empty. But we will try not to grieve as those without hope.
Tonight, both mother and child are stable. Christy will likely be discharged tomorrow (Tuesday).
Bella is being weaned off the ventilator this evening and taking her first sips of her mother’s milk through a syringe. She will, of course, remain in the NICU for the forseeable future. Her cardiac condition is stable, but we still anticipate having to transition to Children’s in the near-term. Everyone involved is hoping and praying (and you would be surprised to hear how many of those attending her add prayer as part of their protocols) that she will fatten up a bit before we have to think about surgery.
Just as she has throughout the pregnancy, Bella continues to offer no shortage of mysteries. Due to the rather odd coincidence of heart defect, low birth weight for a nearly term baby, the excess amniotic fluid during pregnancy (polyhydramnios), the thinness (gracility) of her ribs, and other subtle anatomical features, the neonatologists elected to run the bloodwork that would offer some insight into her genetic/chromosomal situation. Results from those tests won’t be available for around a week or more. I know it may seem we’ve lurched back and forth as to whether Bella has some genetic abnormalities; we’ve certainly heard our share of impressions, insinuations, and educated guesses on both sides of that debate from the medical professionals involved in her care. Now that Bella is in plain view, one can’t help but wonder if there’s some common denominator–some syndrome with a name–that might explain her quiver of curiosities.
As you would expect, the uncertainty surrounding those issues and their potential implications for prognosis and long-term care give us pause, and, we confess, occasional spikes of anxiety. Your prayers are certainly welcomed.
Meanwhile, we thought you might like a video vignette of part of our day. (The new camcorder is getting a workout)
His Providences continue–many through you. Thanks be to God for you.
Elvis has exited the building.
Christy started having a “different” kind of contraction late yesterday afternoon. We made the trip to Labor and Delivery just to make sure things were all sealed up tight. (Seamus had forced us to make a dry run to the hospital prior to his delivery, and that’s what we thought this trip might be.) But once the monitors were attached and the OB made a trip through some pretty frigid Dallas air to have a look, Christy’s contractions seemed to be progressing. In light of both the behavior of the contractions and that this would be Christy’s third C-Section, it was determined that protracting this process was probably unwise.
At around 11:36 pm, just a few moments shy of the birthday of her grandfather, and in the very same OR delivery room as her big brother, Seamus, met the world four years earlier, Isabella Hope Lafferty, entered into previously uncharted territory. She apparently preferred her time as a fish because it seems she took a venti-sized gulp of amniotic fluid on the way out of her mother. Her lungs were filled to the brim and had to be quickly cleared to help her get some adequate breaths. Read the rest of this entry »
December 26th, 9:30am
Or 3 weeks from today.
Yes, the hair on the back of our necks stood on end, too, when we grasped that. Anxious anticipation. We’re so ready to meet this little lady.
Our OB thinks she may even come a bit earlier. Seamus and Savannah were a bit impatient in their arrival. But we’ll keep preparing with the 26th in mind.
And it seems my expertise in sonography is anything but. What I thought was the CCAM in a picture I posted a few days ago was actually her heart. My bad. The CCAM is actually the size of a golf ball right now–not the grapefruit size thing I thought it was. Again, I’ll try to keep my day job. Any of you sonographers out there are welcome to remind us where that mass is. I guess it’s a good thing that it’s not as prominent as it once was. Still, like a frog to a fly, I like to focus on my adversary. So, throw us a bone on where you think it is if you have a sec.
There’s a scene from 2010: The Year We Make Contact that’s come to mind during all this. 2010 is the sequel to Arthur C. Clarke’s 2001: A Space Odyssey, of which the film-version by Kubrick became a classic. Towards the end of 2010, Jupiter shrinks until it implodes with a cataclysmic furor, signifying the first human encounter with an unseen Power in the universe.
So why this scene (of which only the first minute is relevant, but feel free to watch the whole clip)?
This Tuesday night we’re flying Christy and a dear friend (who happens to be a neo-natal nurse) to Houston for the long-awaited fetal MRI on Wednesday. We are so ready to get a good look at that booger in Bella’s chest and to know more precisely what we might be up against come delivery day, some 4-5 weeks away. We’re making the most of Bella’s jaunt southward. She’ll not
only undergo the MRI, but another ultrasound, an echocardiogram, and a consult with the head of fetal surgery, Dr. Darrell Cass (who, we might add, bears a striking resemblance to our favorite troubadour, David Wilcox.) Read the rest of this entry »
exit strategy: 