Friday, October 17, 2014

Capture Your Grief- Day 16

Day 16--Retreat

I did exactly that today.  I took my dear husband and we spent the day together.

And now?  I want that every day.  It's been 15 months since we said good-bye to Kale.  And today when we were expecting exciting news we once again received an announcement that a sweet little baby I've been carrying for the past 20 weeks has Potter's Syndrome.

We're doing this again.  We're walking this road of grief and pain all over again.  Only this time we're already carrying a boulder of grief with us down this road.  I can't even put into words the emotions I'm feeling right now, the pain my heart feels.  My brain can't even wrap around the concept.  It's not real, it's a horrible nightmare, a joke someone thought would be humorous.

Shock would be a good way to describe it.  I'm in complete shock.  My thoughts are unfocused, but I need to talk.  Lightning striking our family twice.  The odds...it's unbelievable.  We saw the perinatologist that we saw with Kale, and she was just as shocked as us.  No kidneys, no bladder, no stomach.  It's a 1 in 100,000,000 chance of it happening twice.  Unless there's a genetic link, which apparently there is.  We speculated before, but were always reassured that it was a fluke.  However, now at this point, it's no longer a fluke.  Both myself and Matt probably have some sort of recessive gene that when put together causes this.  There are about 14 different types of 'genetic variations' that could cause this.  And those variations?  They raise our odds in having a Potter's baby to 1 in 4. Twentyfive freaking percent.  The fact that we have two happy, relative healthy children is amazing, as odds are generally NOT in our favor.

I'm getting side-tracked.  There are many details that really don't matter, as they don't change the situation any.  The point is, we are having a second baby with Potter's Syndrome.  Unfortunately we have walked this exact path before, we know the steps that need to be taken.  We know what we would change, and we know the final outcome.  We know any time we get to spend with our sweet baby is through the grace of God being willing to give it to us.  We know that our dear child could pass away at any moment.  There is only so much room in there and with the added complication of a cord possibly being laid on, the risk is great.

And while progress is slowly being made in regards to treatment for Potter's, and there is a miracle baby out there, we aren't fortunate enough to receive such treatment.  Our precious child is missing more than kidney's, which makes the treatment (a saline solution to help lungs develop, and then hope for dialysis until a kidney transplant is available) impossible.

Our hearts are broken.  I don't think it matters at what age you loose a child, every dream you imagined for them, being stolen away so quickly and replaced with heartache is unbearable.

So here we are again.  Preparing for a baby that we don't get to keep with us.  Katryn's response broke our hearts: "Dang it.  I wanted a sister".  And I wanted to give her a sister.  Martin doesn't understand yet, but he understands that Kale is in heaven and so I think he'll grasp this quick enough. Having done this before, we can anticipate this baby being born around Christmas time, about 2 and 1/2 months early.

And so we're retreating.  We're taking steps to protect our hearts right now, as they are VERY fragile.  We're drawing our family in closer than before and cutting out the excess as needed.  We know that God has a reason for these babies to be called back to Him so quickly, and I wish we could know the reason too.  I've said it before, and I'll keep saying it.  Going by faith alone is HARD.

And there it is.  Potter's Syndrome take two in our house.  Preparing to bury another child, to have to say goodbye too soon, to have to deal with 50% of my children not being here with me.  It's a heart-ache I can't even begin to describe.

5 comments:

  1. OH Krystal, this breaks my heart! I also have more of my children in heaven than here with me, but I only saw the last one, before I said until we meet again. Prayers of Comfort and Healing to all of you and I will put you on the temple prayer list when ever I am in there! Brooklyn will draw pictures of our family and put the baby in them sometimes! Take Care of yourselves and if there is ever anything I can do please let me know!!!! Hugs to you!

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  2. Oh my dear Krystal and Matt. Words fail. My heart is breaking for you. Our family loves your family, that is all I can say. We love and admire you in so many ways. You are in our thoughts and prayers.

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  3. Oh, Krystal. You guys have been through so much. I'm grieving with you, and though my grief is the naive kind I hope you can feel it. So many are grieving with you. Oh, my sweet, sweet friend! I am sending a billion hugs to you today.

    I echo my mom: we love and admire you. I admire your faith (even though faith IS hard), your bravery, your compassion...so many things. These babies are lucky to have a momma like you.

    I will keep your family in my prayers. Love you all!

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  4. Krystal I'm so sorry. Your family will be our prayers!

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  5. Recently I've noticed just how many scriptures talk about having a broken heart and a contrite spirit. I wish there was a way around needing a broken heart, because it's awful. But its clear you are very important to your Heavenly Father and that you have such an important mission on earth. You and your whole family are beloved.

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