23 September 2011

the ties that bind us.

yesterday morning i lounged in bed; playing quietly with a sweaty mass of red curls that belong to our brave, hilarious girl. all while i explored a brand new sacred ground, a whole new depth of grace, a fresh, just unearthed, deeper layer of gratitude.

we love big around here. and I relish in that fact. which is why we have friends that spread across the country, oceans, and skies. roar often teases me about the amount of loved ones we have sprinkled across the map.

on Friday as I held our feverish girl close to my chest, a fellow cystinosis "sister" was going through the unimaginable.

sookie woke up extra early Friday morning running a 100 degree fever. the pit of my stomach started twisting (and not just due to medication) as i committed something i consider a huge mistake in losing perspective quickly and getting lost and frustrated with the trivial. i allowed it to run amuck for only five minutes. then i put my big girl boots on and resolved it would be a day for cuddles on the couch, the backyardigans, olivia, and little bear, lots of water and enough kisses to fly her to the moon. it was okay, we would make the best of it. sure, there were things that i thought needed to be done, but i quickly erased them from my buzzing brain.

then i received news that amelia would be delivering her baby girl that afternoon via c-section (which has the potential to be highly dangerous for anyone with a transplanted kidney, because the kidney is literally, right there next to the uterus; but necessary in her case) at 25 weeks, 4 days due to severe preeclampsia.

..and this is where the gates to my heart swing wide open and i make no apologies

i was sad. i was angry. i was sad again. i relate to amelia in a way that is so achingly precious and massive, all encompassing. we both knew the risks we were up against. we knew what might happen. yet our desire to become mothers was stronger and brighter than numbers and medical facts. our love for our unborn children knew no limits of what had been possible in the past, and after fighting sickness our entire childhood and adolescense, all we wanted was a taste of normalcy, a chance to give life from bodies that denied us of something so simple, yet so complicated as functioning kidneys. we wanted to trade cystagon (the only drug we have to slow down the crystals building up in our bodies) every 6 hours for a positive pregnancy test. we wanted to trade appointments with nephrologists (kidney specialists) for appointments with maternal fetal medicine specialists. we wanted to trade ultrasounds on our transplanted kidneys for ultrasounds that revealed a beating heart inside of our bodies that have waged wars on themselves. we walked into fire, knowingly aware of the costs. we were ready to give up our lives, in order to give life to our impossible girls.

baby girl sophie hope, was born friday afternoon; she weighs 1 pound 8 oz and is 12 3/4 inches long. both fighters are stable right now.

i don't know why things happen the way they do. Life doesn't make sense.

I showed Sookie a picture of baby 'nilla (her nickname), told sookie to tell her to be strong, to grow, to fight; this world NEEDS her.

Sookie blew her a kiss.

I sobbed.


  1. Oh wow - what an awful position for that mother and family to be in.

    "i don't know why things happen the way they do. Life doesn't make sense." I have realised this over and over again in the last 9 months.

  2. oh wow. bless both of their hearts. you ladies are so strong.

  3. Can't imagine! Praying for baby Sophie and her momma.

  4. Great thoughts you got there, believe I may possibly try just some of it throughout my daily life.by Revathi

  5. Prayers headed their way- Please keep us upadated on their progress.

  6. Will say a prayer for baby Sophie. I can't even begin to imagine...

  7. Other than being tired, Amelia is doing Good. We live over 2 hours from the NICU, so we only get to see Sophie on the weekends. It is the hardest thing that either of us have ever dealt with. And between the two of us we have been through the gauntlet. In the 4 years we have been married we have faced emergency rooms due to dehydration from failing kidneys, dialysis, nephrectomy, kidney transplant, having to schedule every minor detail with doctors and medicines to even attempt to get pregnant. And just in the last 5 months we have moved to a new town, sold a house, bought a house, started new jobs, the docs found a tumor during a routine check for my ulcerative colitis and in august I had a total colectomy with temporary ileostomy. I had just started back to work after my surgery the day before we had to admit admit Amelia into the hospital. It has been and still is a stressful, crazy ride. But we are staying positive and trusting God. All will be well! Thank you everyone for your prayers.

  8. Sending prayers for them both.

    I tend to get really angry about this sort of thing. B/c it's just not fair.

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