Even if the healing doesn’t come

Hello friends,

I know that many of you have been anxiously awaiting news of our doctor appointment yesterday, and I’ve been trying to carve out time to write this post.

We’re moving to Taiwan tomorrow, and even as I type the words it doesn’t seem to be real.  We’ve sold our cars, furniture, and taken countless trips to donation centers.  Our entire living space has nothing in it except for an air mattress and multiple suitcases lined up against the wall.  They’re all bulging at the seams and ready to be taken to the airport where they’ll (fingers crossed) weight in at exactly 50 pounds.

Even as I type this post I’m sitting on the floor leaned up against the wall (which I’m finding is harder and harder to do the more pregnant I become).  And despite all of the obvious signs that point to the fact we no longer live here, it still doesn’t feel real.  I think it’s because we’ve been so distracted with all of the concerns with our little girl.

So here’s a recap of our appointment this past Friday:

Before going in, I was told by Dave that the doctor is known for being very straight forward and not sugar coating things.  He is a Christian doctor, but still Dave prepared me for the fact that he wouldn’t be taking my hand and delivering any potential bad news caringly.

We had to wait an extra hour to get in since he was behind with some other patients, so Dave and I were able to go to the new Green Tomato Café at Lawndale and enjoy a delicious lunch together.  I wasn’t nervous or anxious at all, praise God!  Just knowing that I didn’t have to ever go back again to the awful hospital where I’d had all my ultrasounds made me feel much more at ease.

When we finally saw the doctor he basically just started rattling things off of the ultrasound report he had in front of him.

  • Heart looks great (yay!)
  • Kidneys look great (yay!)
  • Legs, feet, and toes are all normal (yay!)
  • Hands, fingers, and arms are good to go (yes!)
  • Spine looks normal (yay!)
  • Abdomen is fine (yes!)
  • Baby’s weight and body size are nice and normal (14 oz.)
  • No nasal bone visualized (we knew this already, but still hard to hear no change)
  • Head is measuring 3 weeks behind the body (something new to use, but he said it’s typical with holoprosencephaly)
  • Eyes appear to be closer together than normal (new to us)
  • Cleft lip and palate (fixable by surgery, but still devastating I’ll probably never be able to nurse her)

And then we started talking about her brain, which we knew was where most of the problems were.  During our last ultrasound (6 weeks prior) they showed us an image where the back part of her brain appeared to be missing.  At that time they believed she had a form of holoprosencephaly (HPE) that is called semi-lobar.  There are 3 types of HPE: lobar (least severe), semi-lobar (middle severity), and alobar (most severe).  When we were originally told it might be semi-lobar I could at least rejoice in the fact that she didn’t have the most severe kind.  However, after the latest ultrasound he told us they believe she has alobar HPE, the most severe form.  I hadn’t cried in the appointment up to that point, but after hearing that my baby could have the most severe form of an already devastating condition made me lose it.  I really didn’t want to cry, but I couldn’t stop the tears from pouring down my cheeks.  He gave me a few tissues and it was quiet in the room for awhile.  I just kept trying to focus on Christ, my refuge, but all I could picture was my little girl being taken from my arms way too soon.

Another devastating thing he told us was that these type of chromosomal disorders (the ultrasound report again stated their belief she has Trisomy-13) come with a very high risk of stillbirth. He told me that it’s a possibility that one day I’ll wake up and she just won’t be kicking or moving anymore.  Again, uncontrollable tears.  I’ve always been so proud of the fact that I’ve been able to feel her since 16 weeks.  Her little movements have always seemed to be her way of saying “hey mom, I’m still ok in here.”  So to hear that out of the blue, for no known reason, one day those movements might, stop just broke my heart.

An encouraging thing he told us was that because from the head down she is relatively completely healthy, as long as I’m able to carry her to full term, there’s a good chance she will be born crying and alive.  That gave me a lot of hope.

After the visit we were both really shaken and really upset.  When we got in the car, the first song that came on the radio was “Need You Now” by Plumb, which has been closely tied to our journey with our baby.  Hearing that song brought even more tears to my eyes, and I was afraid it wasn’t safe for me to be driving.  However, the next song was “Amazing Love” which immediately snapped me out of my tearful state. Through that song my situation was really put into perspective.  Life is so much more than me and my situation.  The whole reason we’re here is to know God and to show His love to others and no matter what happens with our baby, those truths will never change.

To end this post I want to bring one more song into play.  Music is a huge part of my life, and it has such an emotional effect on me. My sister brought the following song to my attention and it fits in perfectly with our situation: “Even If” by Kutless

Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

Lord we know Your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

You’re still the Great and Mighty One
We trust You always
You’re working all things for our good
We’ll sing your praise
Even if the healing doesn’t come

I’ll admit that when I first heard this song, I didn’t like it.  I didn’t want to have to ever think that healing wouldn’t come.  But now I feel God is changing my heart.  I still believe He can work a miracle, but there is a chance that He will choose not to.  And I have to prepare myself to be OK with that and to realize that He is still good, even though I don’t understand.

Thank you all again for your faithful prayers and support.  Our baby girl feels all of your love, and so do we.

Signing off from America for the last time in awhile,

Sarah

Comments

  1. Sarah- your strength and faith in the lord are true gifts! Thanks for staying strong.
    Best of luck with your move , I hope you arrive safely and get all settled quickly.

  2. Sarah you are all still in my prayers. I am glad for the good news you received and sorry for your sadness and tears over the bad news. You are both so strong and your faith is encouraging and amazing. Good luck on your move and safe travels.

  3. Your strength and faith are an inspiration. I may struggle with offering encouraging words, but know that I care.

    Bliss

    • Thank you so much, Bliss. A lot of the times it’s not the words that are offered, but the sentiment behind them, that means so much. Thanks for keeping up with us :)

  4. Anonymous says:

    So proud of you and Dave for following through with your moving plans, for praising God in a hugely difficult situation, and for sharing your heart with others so boldly. Prayers will continue on for you and your family….and the work God has for you in Taiwan. You are loved!

  5. Hi Sarah, you three have been on my mind a lot lately. Hope the move goes well and you are able to get settled quickly out there. I’m sure you are cherishing every moment with your little one, and I’m praying that you get many many more together. He’s picked excellent parents for this little lady. xo

    • Hey Lizzie! Thank you so much for the comment, you are so sweet. We are now here in Taiwan and are getting settled pretty quickly. Our little girl continues to make her presence known by kicking me all the time, and I think she’s going to like it here :)

  6. Praying for you.

  7. Sarah, I don’t know you, but I do know illness. My husband and I and our 4 children had to leave where we were serving as missionaries for us to figure out what was up with my husband’s health. That was 8 years ago and we’ve been through the wringer. He has a chronic illness that comes with boatloads of pain and other problems and there is no cure or help for the condition. The song Even If has been huge in our lives. We first heard it at a time when God was speaking to us and saying, you may not see it, but I am using this for my good and your good. Keep trusting.
    And so we do. And so will you. I can tell, because you want to trust Him, you believe He is good, and He is working in you in a way He could not if it wasn’t for your daughter. I know because I have been there. My youngest child was still in utero when my husband got sick (we believed it would be only a year or so until he was better at that point). My youngest son is now 7.5 and has never been able to rough house with his dad. My oldest is 12 and has had to endure her dad changing and getting sicker as the years go by. My middle 2 are 11 and 9 and have no memories of their dad pre-illness. Yet I see God working in them and in me. In ways he couldn’t have if my husband was well and we had remained missionaries oversees.
    God is good, He is faithful, and He is beside you all the way. God Bless You.

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