In and out of sad… In and out of inconsolable… In and out of numb.
I think it's all of the possibilities? I would expect that it's not like a terminal cancer diagnosis, where the doctors explain exactly what part of the body is failing that's killing your loved one and give you a window of time to expect to have left with them. It's not like our daughter has any one thing that physically, internally, the doctors can pin-point and say: "That's the thing that she's going to die from." She's just… going to die.
Her body's just going to stop.
It's in her DNA. To die…
I mean, we all die. I guess, technically, it's "in all of our DNA" to die at some point, because we're all human and all humans die. But for most of us, when we're born, our death has yet to be determined by our bodies. We're born into endless possibility, into our future, into hope.
Avonlea is being born into death. Certain and yet so uncertain…
For many, death seems to be determined by one or more choices that act as butterfly-effects, that lead to tipping-points, that eventually, via the twists and turns and ups and downs of life, lead to the end. The decision to drive through a yellow light rather than stop… or that first cigarette.
Avonlea's end is already written out in black and white on my medical records: "Fetus with Trisomy 13." She hasn't done anything to bring this upon herself… yet her cause of death already exists, embedded into her. There's no treatment, no cure… According to the doctors, it's like she might as well already be dead. It's just a matter of time… the amount of which cannot be determined.
We had a follow-up ultrasound on Thursday, to measure Avonlea's growth and have Dr. Shaver, our perinatologist, look at all of her anomalies (enlarged ventricles in her brain, her misshapen heart, and her echogenic kidneys) and hope that he could give us more… just more. More information, more of anything really.
This whole thing is so hard to wrap our minds around- it really is. Dr. Shaver said that, to look at each of her anomalies individually, he wouldn't necessarily suspect any one of them to indicate a terminal diagnosis on their own. Some babies have enlarged ventricles in their brain and are born healthy and live completely normal lives… some live full and happy lives with a mental handicap. Some babies have one side of their heart that's bigger than the other, and depending on the cause, can usually receive treatment and go on to live normal, healthy lives or the defect can heal itself with time. Some babies have echogenic kidneys that, although they appear abnormal, function normally and turn out not to have any affects on the child's health after birth whatsoever... they just don't look normal on ultrasounds.
But our baby has Trisomy 13.
None of her anomalies, in their own right, are considered deadly. None of her anomalies are necessarily THE thing that is going to kill her. Each of these anomalies are a simply symptom of the real deadly issue.
Trisomy 13 is going to kill her. That deadly little chromosome present in every cell of her body is what's going to be the death of her, and nothing else. That stupid extra 13th chromosome, the one that caused the ventricles in her brain to swell, caused her heart to form incorrectly, makes her kidneys appear "too bright" …that thing is going to cause her body to fail her. To just, give up. She will "fail to thrive."
Dr. Shaver assured us that it truly is impossible to predict when this will happen. He says he's seen Trisomy 13 babies with anomalies similar to hers survive birth and live as long as 30-60 days… some, in extremely rare instances, have been known to make it several months or even a year. But the simple fact that she has Trisomy 13 means that the possibility of her dying suddenly, for no other reason than that her body just fails her, cannot be excluded. "Failure to thrive" is just as likely to happen to Avonlea before she is born than it would be for a Trisomy 13 baby with far worse anomalies or more deadly symptoms. The fact that none of her anomalies are considered "immediately life-threatening" means nothing because the anomalies are not the real problem. The real, underlying problem is that evil extra 13th chromosome.
What all of this basically means for us: we're going to lose your daughter, but we will never know when. It could be anytime between tonight and her second month of life. It would be unreasonable to assume her to live any longer than that, given the statistics. Your guess is as good as ours as to when. Our lives, our careers and all of our plans will have to be put on hold so that we can simply sit and wait.
All of this leaves me feeling all sorts of different shades and variations of grief.
There are moments when the weight and reality of Avonlea's imminent death washes over me and leaves me sobbing uncontrollably, gasping for air, traumatized by its certainty. There are moments when I feel her move and I only have to try a little to hold back the tears as I think about how much I will miss that… the knowledge that she is alive.
And then there are moments when I can't feel anything. I hate those moments more than anything.
Sometimes it brings me peace to think about the fact that my own death, though my mind or body cannot predict it, is already known by my God. That He has always known how Avonlea would die and that He created her this way for a purpose, even though He knew it would also bring about so much pain.
And then sometimes it throws me into a panic of rage to think about how we begged the Lord for this baby. We sat in our spare bedroom and prayed for a baby for whom we could turn that room into a nursery. We planned… we tried. We yearned for her! But then God gave us a terminal baby. He knew how ready we were to be parents and He gave us six shimmering, beautiful months of joyful expectations of parenthood. And then He took it all away. It makes me angry, and then the guilt brought on by that selfish, depraved anger humbles me just enough to bring me back down to numbness.
Oh friends… this is a tough one. This is the real deal. This is hard.
Please pray for us… I can't speak for the emotions Brian processes through or the way he processes through them. I can only tell you what I am feeling these days. I feel heavy, cold, and afflicted. I want to feel the Lord near me but right now I just don't… I'm tired of people telling me that the Lord will never leave me nor forsake me, that I'm his child and that He "favors" me... and of course my all-time favorite cliche and, let's be blunt here, LIE: the Lord will never give you more than you can handle.
Really? Find that for me in the Bible, please, because I CAN'T HANDLE ANYTHING.
(and no, 1 Corinthians 10:13 does not count. If you were going to cite that one for me, you're pulling it out of context)
I am feeble and weak. I CANNOT handle this. I'm NOT handling it!
I know in my head that any ounce of faith I do have is a a gift from God (Ephesians 2:8). But that faith is worn and trembling right now. It is not being challenged by temptation to doubt Him... It is just tired from grief. It needs some adrenaline and I can't think of anything that I even want to get that adrenaline from right now other than for my baby to be healed.
Friends, please continue to join us in prayer for Baby Avonlea. Please, please pray for the Lord to do an awesome miracle in her and prove the doctors wrong! We know that He can restore her body and give her the life we've always dreamt of for her: a long, full life of glorifying her King. We don't expect a miracle, but we do have faith that He can perform one.
Lord, God… in the name of Jesus we beg you to draw near. We beg to be reminded of your love as we are constantly reminded of your sovereignty. We beg you to heal Avonlea… She is our child, Lord. Your word tells us that you can sympathize with us in every weakness, and we do draw near to the throne of grace, God that we may receive mercy and find grace to help in time of need. This is our time of need, Father… grant us grace to sustain us in our season of sorrow, and grant us mercy by healing our baby girl. Please heal our daughter… please, Jesus, heal Avonlea.
You fill our hearts with love and faith
You fight for us, You make us brave
You are God, You are God
You walk with us, You lead us on
Faith, hope and love wakes up with dawn
You are God, You are God
And life flows from God, it flows from God
***PLEASE POST YOUR PRAYER(S) FOR AVONLEA IN THE COMMENTS BELOW.
WE APPRECIATE YOU AS YOU STAND WITH US IN FAITH***