Come as you are

The past two weeks have been an emotional rollercoaster for me ever since we got a definitive diagnosis. There was not a night that I did not shed a tear for my little girl.

I also started getting frequent Braxton-Hicks contractions ("fake" contractions that allow the body to practice before real labour contractions occur... just a tightening of the abdomen and shouldn't hurt) last week, especially during work and mine have been painful from time to time, stopping me from doing anything and needing to sit down until the pain subsided. This experience is a painful reminder that our time together is approaching the end.

I also saw the OB again on April 8th, and it was extremely difficult for me to accept when he told me, "it is a 100% that your baby will not survive and that it would be a miracle for her to be born at term." He advised me to seriously reconsider delivering early because: 

1)  Bubbles' edema and encephalocele makes her so much bigger than she actually is... making delivery after 28 weeks result in dystocia (traumatic birth), where I would require a c-section instead. If I manage to carry her to term (anywhere after 37 weeks), she may be so big that I may require more than one incision... resulting in longer recovery, higher negative impact on future pregnancies, and never deliver vaginally in the future. 

2) Because he believes that the outcome of Bubbles is no different, delivered now, or delivered at term - death.

3) risk of mirror syndrome where I develop  high blood pressure because of her condition 

Together with the OB, we have decided to meet with the Pediatrician, palliative nurse and social worker in addition to our OB check up this coming Friday on April 17th. We will have to hear this all over again, and will be discussing end of life management for Bubbles (from aggressive interventions to comfort measures, quality of life, ethics, issues, etc etc), preserving memories, maternity/critically ill child leave of absence with this team. It will be an intense day of information and emotion overload and I'm so glad that my mom can come with us. 

I don't want to be overwhelmed with sadness right now, because I want to enjoy the joys of carrying this beautiful child for me and DY. I need time to be off work, to relax and dedicate more time to Bubbles, and prepare for our beautiful encounter and goodbye when the time comes. I am so surprised that  DY already bought a stroller, some cute dresses, even though we know that we won't be taking her home with us. It's just something that her daddy wishes to do for her and for me. 

Someone told me today that she felt really bad for me, and was in tears because she was heartbroken by my circumstances. She said I don't deserve any of this.

But you know what??? Everytime I cried for her, she kicked me to let me know that she's still here with me.  She is everything I deserve, because she is a precious gift - that DY and I dreamed of and created.  She is strong and endearing, has nourished the love between DY and myself, has brought forth the compassion of our friends and acquaintances, and has encouraged those who have been enduring difficulties - God has entrusted something so precious to us and we want to protect her and love her as much as we could. 

28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.” - Matthew 11:28-30

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” - John 16:33

Don't be too sad for us. Stay strong and keep praying for us. Jesus is our high priest who has been through so many trials, hurt, and suffering, and he understands what we are going through, sees every tear that we shed, hears every prayer we make... and furthermore, he has overcome the sting of death and has risen! He promises to walk with us through the valleys, and we will hold on tightly to Him.

I found great comfort in the song below, and I hope your brokenheart will start to mend as you sing these words aloud and truly believe that God is a healer of the brokenhearted.

Come as you are (David Crowder)

Come out of sadness
From wherever you've been
Come broken hearted
Let rescue begin
Come find your mercy
Oh sinner come kneel
Earth has no sorrow

That heaven can't heal

Earth has no sorrow

That heaven can't heal

So lay down your burdens

Lay down your shame

All who are broken

Lift up your face

Oh wanderer come home

You're not too far

So lay down your hurt

Lay down your heart

Come as you are

There's hope for the hopeless
And all those who've strayed
Come sit at the table
Come taste the grace
There's rest for the weary
Rest that endures
Earth has no sorrow
That heaven can't cure

Fall in his arms
Come as you are
There's joy for the morning
Oh sinner be still
Earth has no sorrow
That heaven can't heal
Earth has no sorrow
That heaven can't heal