I’m glad I went to Bible Study today.  I’d have liked to have climbed back in bed, but my desire to be around these amazing women of faith was stronger.  I felt emotionally fragile on my way there and was worried that I’d break down crying once I saw everyone.  As I mentioned in an earlier post, many of the tears I cry are not out of sadness or self-pity, but instead they are tears of awe and relief that I have so many people who care about me and who are praying for and with me.  It stirs up an emotion in me that causes me to well up in tears. I am blessed, amazed, and inspired by those who are dealing with their own painful grief, yet manage to find the space in their broken hearts to reach out to me and take on my sorrow in addition to their own.  I am so blessed by these many acts of love.

On his way down the steps at 6:15 this morning, William overheard Greta loudly giggling in her bedroom.  I heard it from ours and wondered HOW she was up already??!! That little girl would sleep until 10 every day if we let her.  William peeked in on her and saw that she was still asleep.  She must be dreaming – sleep giggling.  He kissed and loved on the kids before leaving for work, just as he always does.  When he kissed Greta, she opened her eyes and looked at him with a smile on her face.  He asked if she had been dreaming.  She said she had, so he asked her what it was about.  She said, “It was about you and Mommy.  And you were feeding a baby! And I was playing with Gavin.”  William asked her if the baby in her dream was a boy or a girl.  “A girl,” she responded.

We still don’t know if this sweet baby is a boy or a girl, but we hope that Greta’s dream holds true and that we WILL get to spend some time on earth with this little girl (or boy).  What a sweet message from heaven that was sent at PRECISELY the right time, just as William was on his way to her room.

One of the first thoughts that went through my mind after I learned that our baby has T18 was, “My poor kids!!  They can’t go through this!!??”  Gavin and Greta, and Sophie too, were so excited at the prospect of a baby sister or brother.  We talked about names, and all the fun ways things were going to be different with a baby around.  Gavin had his heart set on a little brother, and Greta refused to imagine the baby was anything but a little sister.  They talked about all the ways they might be able to help with the new baby and even practiced “bounce-walking” with our kitten Patches.  Gavin would put his hands on my belly and say, “Hello?  Hello!  WHO. ARE. YOU??” and then stand there as if he were actually expecting a response.  These once treasured moments burned and stung so bad as I recalled them and then realized we’d have to tell our kids that it wasn’t to be.  I had no idea how they were going to respond to the news.  Are Gavin and Greta old enough to understand the rawness of this situation?  And then there is sweet Sophie.  This precious girl has so recently come back into my life and now here she is unintentionally thrust into this tragedy with us.  “This was supposed to be the icing on the cake for us!!!!!” I yell at God.

Upon being told the grave news after school last week, Gavin and Greta were quiet and sympathetic to an extent, but they are still protected by their childhood innocence.  They really have no idea.  I wish the same were true for the rest of us!!!  Even though each of my kids are all processing this differently, I’ve encouraged them to be open with me about their feelings, and not to be afraid about hurting mine.  I’ve also informed their teachers about what is going on here at home.  They have each been incredibly supportive and have promised to keep an eye on my sweet kids while they’re away from me.

My hope is that through this journey, each of my children will see the value I have placed on their own lives.  I have unconditional love for who ever it is that happens to “show up in my uterus” whether I planned on them being there or not, and whether they have the correct amount of chromosomes or not.  Each of the 4 individuals that began their lives through me are a blessed gift from God, and I refuse to see it otherwise.

We saw our doctor again today.  At our last meeting he presented us with our options:  to continue the pregnancy or terminate.  Not wanting to sway us one way or the other, he implied that 50% of people chose to continue, 50% chose to terminate.  This was OUR decision and we needed to figure out what was right for US.  He gave us a few days to think it over and now we were reporting back to him.  Fortunately, he had the compassion and flexibility to be able to see us after regular business hours.  I really appreciated that.

While initially, it seemed like the most reasonable thing to do would be to “get this over with” and terminate the pregnancy, that notion quickly faded after about the third day.  My initial argument of, “What difference does it make?  The outcomes will most likely be the same – this baby will just die sooner rather than later,” was made null and void by a statement from my friend Maggie.  She made the point, “Couldn’t the same be said of all of us?  We’re ALL going to die sooner or later!”  She’s right, and I KNOW this, but just needed that gentle reminder amidst my flurry of chaos.  Just goes to show that you should never make a decision out of emotion — no matter what it is.

I explained this to Dr. S. and I watched his face soften as I told him we had decided to continue the pregnancy.  He sat there for a moment with a slight smile on his face and then said, “I’m proud of you.  I’ll be honest with you that most people actually do choose to terminate.  I think you’re doing the right thing.”

This is not an easy road to take, but I believe that God will first give us the strength needed to make it through, and then He will bless us beyond our wildest dreams.  I’ve read several Legacy pages of infants born with T18, and the common theme among all of them is what a blessing these babies are in the lives of their families.  Not one of these families would rewind time to change a thing other than they wish they hadn’t worried so much.

Each night before we go to bed, we thank God for giving us the strength and peace to have made it through another day.  Each morning we ask for more, and He pours it out to us generously.

I found this song by Selah called “I Will Carry You” (for which this blog was named after)

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies wipe your teary eyes
Who could love you like this?

People say that I’m brave but I’m not
Truth is I’m barely hanging on
But there’s a greater story
Written long before me
Because he loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life 
And I will praise the one who’s chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to his voice
And he says
I’ve shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the one who’s chosen me
To carry you 

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While I have made the decision to carry this baby while her (or his) heart beats here, God is carrying me with the same tenderness and love x infinity.

One of the beautiful treasures that has come about through this sad time is the reinforcement of our marriage.  I’ve always regarded our marriage as one of great strength, but this has bonded us closer together than I could have ever imagined.  We truly enjoy each other’s company and draw such comfort from one another just by being near.  A couple of days this past week I went with William down to work.  I couldn’t face the awkwardness of going inside, but instead stayed out in the car.  I kept occupied with my phone and my new iPad.  It was so nice to know that William was only a few feet away if I needed him, and I was only a few feet away if he needed me.

During one of our trips in the car the song “I’m With You” by Amy Grant and Nichole Nordeman came on.  We’d heard the song several times before, but never really personally related to it.  I think it is written from the perspective of Ruth and Naomi.  However, this time it came on, we started listening to the words and realized just how perfect it was for us right now.

Love is a hurricane in a blue sky
I didn’t see it coming, never knew why
All the laughter and the dreams
All the memories in between
Washed away in a steady stream.

Love is a hunger
A famine in your soul
I thought I planted beauty
But it would never grow.
Now I’m on my hands and knees
Trying to gather up my dreams
Trying to hold on to anything.
We could shake our fist in times like this
When we don’t understand or we could just hold hands

You and me Me and you
Where you go I’ll go too
I’m with you, I’m with you,
‘Till your heart finds a home
I won’t let you feel alone,
I’m with you, I’m with you, with you.

You do your best to build a higher wall
To keep love safe from any wrecking ball
When the dust has cleared we will
See the house that Love rebuilds
Guarding beauty that lives here still

Who can say I’m left with nothing?
When I have all of you, all of you
In the way you’ve always loved me.
I remember, He does too.

As we were listening to this song and paying attention to the words, we “coincidentally” reached for each others’ hand right at the part  “We could shake our fist in times like this When we don’t understand or we could just hold hands“.  We just smiled at each other like, “Oh hey!  That was neat!”

I’m so thankful and relieved that I have this sweet precious man in my life to go through this with.  While I had the love and support of my family and friends to help me through Sophie’s adoption 19 years ago, I did not have the love and support of a spouse.  What a blessing he is.  I love you, Pudding.  We’re going to make it through this — you and me, me and you.

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.