This was a posting on a Trisomy 18 support page – words of advice to someone else  – that I think are so touching and so true.  This is from a woman who is also expecting a baby with Trisomy 18.  Yet here she is offering such inspiring words of wisdom and truth to others.  I found this the day after we were given the diagnosis and was so lifted up by her perspective:

I know how hard it is to walk right behind the Lord, one painful and confusing and mysterious step at a time while the most important and amazing thing He could put into your life seems to hang in the balance.  But I pray you will take heart in the fact that your son’s life is truly not in the balance. His life is in the same capable hands that my unborn daughter’s, and yours and your husband’s lives are in.

To be a Christian is to admit we are not and could not be God. It is to live in the humility and vulnerability that we can control very little. It is to live in the reality that nothing God has given us, is really ours. It is all His, and He gives and takes away. I fully admit that this was an easier thought for me to have before I thought God may see fit to give and take away a child. But it is no less true now than it was before.

I do not understand why this is happening. It is not fair. (And believe me I have screamed that at God through tears) But just as I rejoice in God’s lack of fairness when it comes to forgiving me, I take comfort in knowing that He usually chooses the people who are terrified, but still willing to follow Him to walk down the most important roads He makes. I don’t want to do this. You don’t want to do this. Moses, Paul, Jonah, many others and Jesus himself didn’t want to do what God asked of them either. And yet they yielded to what God laid before them despite some very big, and very legitimate feelings. Those are the people God chooses to do His perfect will, because those are the only people who will.  And here you are. You have not tried to control this by ending your baby’s life on your terms. You have not tried to be God because it is too painful not to be. You are still waiting on the Lord even in the midst of your cries to Him to make it all stop. Whether you like it or not, you are walking in the perfect will of God. As a matter of fact, if you don’t like it, it just means you are in good company.

I’m not suggesting your son will serve some cosmic purpose of God by living and dying the way he will. I’m suggesting he already has. And your obedience, despite your feelings, has been the cooperation God needed in order to make it possible.
For me, I am living in light of this some days, and sobbing and praying God would “let this cup pass from me” on other days.

I hope these words remind you of what you already know, and help you to rest in that assurance long enough to rejoice at the kicking inside you.
Every day is a gift, and eternity will be even sweeter.

Very sincerely, Dana

Just checking in to let you know we’re doing okay.  I know many of you have been worried, and I want to alleviate you through these posts.  While the news was unbearable and debilitating, we HAVE had a good day yesterday, and today looks like it might be the same.  William and I were both out of bed without too many tears, helping the kids get ready for school. We’ve already figured out that we just have to take these next few months minute by minute and not worry about what tomorrow will bring.  We have decided to continue the pregnancy, although we have been given the option to induce preterm labor.  We believe that for what ever reason, this baby was meant to be here on this earth, even if only briefly.  GOD HAS A PLAN IN THIS.  It’s not for us to figure out or to alter in any way.

Our faith in God, our family and friends are the rocks that we cling to when the waves of grief knock us over and nearly drown us.  Every so often, even as early as yesterday morning, we’ve seen a few little treasures that have been washed up on the shore (old friends reconnecting with one another, our faith becoming an example to others).  As our journey continues, I will make it a point to keep an eye out for more of these pretty sea shells, gold coins, and messages in bottles.  I know that one day we will be able to stand back and see the beauty of the beach for what it is, after the storm has passed.

I’ve talked with a couple of women who have been on this journey, and that has been so very helpful to see that we’re not alone and that we WILL get through this, but there is no way to do it on our own.  We HAVE to give this to God.  Only He is strong enough to bear a load like this.  I remember expressing awhile back that I was in a spiritual funk, and I wanted to be out of that.  Now I think, “Okay!! Okay!! But did You have to bring THIS, God to get me out off it????”  Maybe it was that bad?

This morning William opened the Bible up to Ecclesiastes 7:1-6 NIV
A good name is better than fine perfume, and the day of death better than the day of birth. It is better to go to a house of mourning than to go to a house of feasting, for death is the destiny of everyone; the living should take this to heart. Frustration is better than laughter, because a sad face is good for the heart. The heart of the wise is in the house of mourning, but the heart of fools is in the house of pleasure. It is better to heed the rebuke of a wise person than to listen to the song of fools. Like the crackling of thorns under the pot, so is the laughter of fools. This too is meaningless.

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God has us in His arms.  We feel that and know that.  The army of prayer warriors behind us is beautiful and amazing.  Often I find myself getting choked up over God’s glory as opposed to grief and feeling sorry for myself.  Yes, this really really really really sucks, to put it bluntly, but God is going to make something(s) beautiful out of this dust.  PLEASE PARDON OUR DUST.  😉

I just want to let everyone know I’m doing okay and for the most part I’m not in a heap on the floor.  I was at first, but I have tiny glimmers of hope which I believe will someday be blinding.

Thank you so much for your sweet prayers and your love.  I couldn’t do this without all of you.

The pain and agony of receiving the news that our baby has Trisomy 18 can barely be put into words.  It was such a terrible diagnosis, that it hadn’t even blipped on our radar as “worst case scenario”.  I wanted so badly to go back to those halcyon days before the first ultrasound, where everything was so exciting and full of hope.  Even just to those few moments in the waiting room when we were so anxious to see our baby wiggling around on the ultrasound screen, and hoping that we’d have enough will power to decline the knowledge of the baby’s gender.  How neat that will be to find out AT the birth, we whispered.

After the ultrasound that morning we spent the next three weeks exhausted with mild apprehension over a couple of “soft markers” that were noted.  Our baby had choroid plexus cysts on the brain and a single umbilical artery, but was otherwise appearing healthy and growing normally.  Each of these soft markers, by themselves are not much cause for alarm, but with the two of them present, our doctor felt it would be a good idea to have a level two ultrasound done at the hospital 3 weeks later.  Instead of answering questions, that simply added to our worry by now enlightening us to a probable heart condition along with an increase in amniotic fluid.  We were distraught with fear and decided to have an amniocentesis done 3 days later “just for peace of mind”.  Neither my husband or myself could endure the rest of this pregnancy WONDERING if something might be wrong.  We were so anxious to get the call from our geneticist this past Monday telling us that all of our worrying had been in vain — there was just a minor heart condition, but that could be fixed.  In the very back of our minds, we had prepared ourselves for a diagnosis of Trisomy 21 (Down’s Syndrome).  While that still would have been a blow, it wouldn’t be the end of the world.  Trisomy 18 — we never bothered to chalk that up as a possibility.  The baby was measuring completely normal and had no other anatomical deformations… Everything HAS to be fine!!

God has other ideas, and everything is NOT fine.

Furious with God, I just wanted this strange “anomoly” out of me. Every kick and every jab was a mockery of this entire pregnancy. I didn’t want anyone to look at my big belly, touch it or acknowledge it in any way. If I somehow could have climbed out of my skin and run away, I would have done so at that moment. The song “Something I Can Never Have” by Nine Inch Nails resonated in my brain, “You make this ALL go AWAY… You make this ALL go AWAY…” By Day 3 (today) my anger has subsided. I am no longer so angry with God as I am confused. I feel like I’ve already been through my “maternal tragedy” back in 1993 when I parted with Sophie. What more do I need to prove through the loss of another child?? Who does God think I am?? Maybe BECAUSE I am not one to make decisions out of fear and anger, God singled me out as the perfect candidate for this. I don’t hate this pregnancy anymore. I DO love this baby. Here he or she is warm, happy and content inside of me, has no idea that there is anything “wrong”. This little life might not be what I or the medical community would consider as “normal”, but it is no less important. Learning to love and cherish each moment.