I spent a good part of the afternoon relaxing in a warm bath, which seemed like the best place to be on a cold rainy January afternoon.  It was hard to be in that place at first, as that’s where I was when I received the devastating phone call from our geneticist.  However, I quickly relaxed, and let the sweet little pokes and jabs that were protruding from my belly surface occupy my attention. 

I watched as the literal ripples traveled across the water, and thought about the figurative ripples that this baby’s life would also create here in this world.  God has something beautiful in store here.

The bout of worry that plagued me today was wondering if I would have the mental clarity to know what measures to take once this baby is born.  We have been told by the doctors, and read in other’s accounts that the medical community is not enthusiastic about rescusitating T18 babies.  In most cases, the attempts are futile.  I understand that.  But at the end of the day, these doctors and nurses get to go home to their families and our situation was simply just chalked up to one of those sad days that goes along with the territory of being in the medical field.  This isn’t going to be just a “sad day” for us that we can brush ourselves off and walk away from.  Every decision we make that day will live with us for the rest of our lives.  Will we be inflicting unnecessary pain and suffering on this child if we insist on surgery to repair the heart defect?  Or will we be okay with solely offering care and comfort (DNR), letting nature take its course?

Based on many of the stories of other T18 babies I’ve read, there are many people that have been okay with taking the route of offering just care and comfort.  I think, ultimately I would be just as okay with that (as anyone could be expected) but for the fact that I come across these other stories featuring pictures of cheeky 1 and 2 year olds smiling from their little Bumbo seats, etc.  These are the T18 babies who have made it past those first hours, days, weeks, months.  Could my baby have been one of them, had we insisted on “drastic measures”?

I know there is no sense in worrying about the future when I really have absolutely no idea what to expect.  I do need to come up with a birthing plan though.  Fortunately, that is nothing that is written in stone and we can change it at any time, but it gives our doctors and nurses an idea of what our situation is and what we’d like to have take place once this baby is born.  Problem is, I just don’t know right now, not knowing exactly what we are facing!!

Just as God has given us the strength and the tools to have gotten through these past 2 1/2 weeks, I know that He’ll pull through for us when that time comes.  Please pray that William and I will have the mental clarity and Godly insight to do what is right for our baby, according to God’s will.

I just received a package in the mail from a bereavement counselor I spoke to a couple of weeks ago.  There are several brochures on grieving the loss of an infant, memorial ideas, and how to help other children through the loss of their sibling.  I’m sitting here in my car in the parking lot of Greta’s dance class skimming through these brochures and had to put them away. That anyone should lose an infant, let alone myself, is just unbearably sad.

While I feel this tiny little person kicking around inside of me, it somehow seems wrong to be grieving his or her death.  I don’t know that I’m ready to do that, but yet I want to be prepared and have funeral plans, etc. put into place should the need arise.  I really don’t know what to do with all of this. I wonder, am I just avoiding this whole mess or am I staying so focused on God and the present?  By making preparations for this baby’s death, does that somehow discount my faith in a miracle?

I’ve been thinking lots about the indeterminate loss of this baby versus the sacrifice that was made in parting with my first born.  There is definitely a congruity that can be drawn between the two scenarios.

As in making an adoption plan, I have prepared myself for our possible worst case scenario of going home without a baby.  I guess the big difference is that I don’t feel like I really have a choice this time.  In an adoption, I at least knew in the back of my mind that I could reverse my decision at any time before I signed the papers.  Not that I WOULD HAVE, but that just seemed to give me a sense of control over everything.

The beautiful similarity is this:  If I were considering adoption right now, and I were going through the piles of adoptive family profiles that are typically given to a prospective birth mother, and I came across God’s profile, how could I possibly pass it by?  Maybe it would say something like this:

Dear Birthmother,

I’m so sorry for the burden that has been placed on your heart right now.  I know that pain intimately and you are not alone in it.  I would love to take the pain away from you right now, but I promise you there are beautiful things to come as a result of this pain you are enduring. I will walk with you through it and I will hold you up when you can’t walk on your own.  

For reasons unknown to you right now, this tiny baby is not able to be a part of your family as you know it and as you had expected.  I know that wounds you deeply, but I also know that you want the absolute best for your little one.  You can rest easy in knowing that I can provide that in more ways than you could ever possibly fathom.

Life for you on earth, as you know by now, will be speckled and marred with hardships, even though that was not my original intent for you.  The same would hold true for your precious baby if he or she were to come live on this earth with you.  What would you say if I could guarantee you that your child would never ever have to face any of these hardships and trials of life?  He or she will be destined to paradise, forever in the arms of his or her heavenly Daddy and surrounded by hosts of angels.  There are no tears, pain or suffering here.  Not even a little bit.

I’d love to say you could come and visit when ever you like, but you will someday see that what seems like “forever” to you now is just a blink of an eye compared to eternity.  Before you even realized what happened, you will be reunited with your sweet precious little one.  I think you already know what that is like, as I gave you a glimpse of that here on earth with your first born.  Imagine having another one of those reunions, but this time it will be in my Heavenly Kingdom!

Please don’t worry about what the future holds for you or for your baby.  I promise you it is going to be beautiful in the end.  Just as you carry this baby, I will carry you.

Love,

God

There is no question.  Perhaps this baby is THAT special, that no, William and I are not fit to be his or her parents.  Only God can fulfill that duty.  While there are times that I feel uncomfortable with the lack of control I have here, I am learning more and more every day to release all that I want and think I need to control, and surrender it to God.  He knows what is best for us better than we do.  Can I just trust Him?  Yes.

I am so deeply moved by the outpouring of love from my family and friends over these past days.  My husband was first on the scene, the first one I clung to, the one who held me up when I felt like I couldn’t stand on my own two feet.  Then came my Mom, my sister, my Dad — dropping what ever it was that they were doing to be by our sides.  To help us break the news to our kids, to help us make sense of the broken shards we were in the midst of, just to simply be there when we needed them most.

I’m so touched by my friends and family that showed up bringing food, offering to take my kids out for awhile, lending shoulders to cry on, even just stopping by to see how I’m doing.  The BEAUTIFUL flowers, the dinners, the chocolate covered strawberries, the cards, the books, the e-mails, the text messages, the voicemails, the prayers, the masses being said on our behalf, and even the Facebook posts and comments. It is awe inspiring to know that there are people praying for us who I do not even know.

During a toast at my wedding, my Dad mentioned a quote he had once heard, “Shared happiness is twice the joy, and shared sorrow is half the pain.”  That is most definitely true as it pertains to my husband and myself, but through your willingness to share in our sorrow, you have generously lightened our load.  Someday when we see the beauty that is to come, I can’t wait to share that joy with you too.

I want each of you to know how much you mean to me and that your prayers are not in vain.  I can assuredly feel God’s comfort and peace surrounding me right now like I never have before.  Just 12 days ago, I thought I would never ever smile again, and wondered how life could possibly go on.  Joy has been brought back into my life and for that I am so thankful.

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 

====

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.