• Let us mourn, let us dance.

    You’d think I would have gotten the message by now.   Every day I open my Facebook and face grief. The kids like my daughter, well, they die sometimes, and every single day, my tribe lives with the grief of lost babies while we sip our coffee. It’s not easy, as I have written before, but loss is just part of the equation for us.  The grief becomes part of our day to day routines, we face it like one may face a yearly holiday, familiar and expected. We still cry with each loss, but we just learn to not be crippled anymore. You face death daily so you just…

  • How I Sleep Trained My Trisomy Toddler

    I am not an expert at parenting. If anything, I feel like this entire blog is dedicated to all the ways I struggle as a parent, specifically, a special needs parent.  I have hesitated posting my experiences with sleep training my daughter for fear that I may jinx it…. sleep is next to godliness, y’all, and I’m very grateful for the 8 hours I get every night.  It took me 15 months of sleepless nights to get there, but in case anyone out there is struggling like I was, here is how I solved my sleep problems.   Georgia NEVER used to sleep.  I would go days surviving on *naps*…

  • JPM

    You really never get enough credit. When people tell me Georgia is doing great because of my hard work, they don’t see you, in the eaves, the glue to the whole operation.  But I do.   The moments after our daughter’s birth defined us in a completely new way.  Our relationship changed, and I changed too, but you didn’t stop loving me.   When I was still recovering from the emergency c-section, you pushed me to walk, you held me up while I stood in the shower bleeding, you helped me get dressed. When I was pumping, you counted every ounce with me and celebrated.  You helped me collect each…

  • A Broken Piece

    Sometimes I think I am broken. “It’s okay,” he said, “You’re depressed.”   Depressed. I guess I didn’t even realize that’s what I was.  And the statement, so poignant, so pointed, so exact, makes everything seem so much more exasperating and exhausting.  “Try to say something positive,” I think to myself, “Be active, go do something…” Why is everything so much harder now?  So much heavier?  More stagnant and unchanging, yet everything seems to require more thought.  I want to cry but do not know why.  I want to be happy so I can make my husband happy, but I’m not sure what I’m missing.  And maybe nothing is missing…

  • The Jealous Mom

    To the mom with the baby walking at ten months, I envy you. To the mother of the child telling you, “no,” I envy you. I envy the mom who can hand their child a sippy cup and I envy the mother who gets frustrated when their child grabs something they aren’t supposed to.  I am jealous of those who have to baby proof and even more jealous of those who have to chase their kids down. I genuinely wonder what it must be like. I wonder what it would be like if my daughter was typical–if when I went into her room, she was standing holding the edge of…

  • The Gray Area

    As I sat in the waiting room for Georgia’s therapy, anticipating to be called back, another mother & her daughter sat next to us.  Her daughter was adorable, chunky, and full of smiles.  I watched as she held her mother’s phone, smiling at the screen.  I wondered what that was like… to have your child hold something you handed her.   A little boy came in and sat with his grandmother.  As Georgia’s toy lit up and made sound, he came running over, and grabbed it before I could stop him.  I felt rude as I ripped it away and said loudly, “Please don’t touch her!”  His grandmother picked him…

  • Karson

    It breaks my heart. Every time, my reaction is different, yet all the same. It never gets easier. It never hurts less. “I can’t describe the feeling I feel knowing how much Karson is loved!! It’s time for an update….that, frankly, I never thought I’d have to give…. ECMO was not successful last night…. Karson went to her eternal home with our Heavenly Father…😭💔😭💔😭💔😭💔 2 Timothy 4:7–8 (ESV) 7 I have fought the good fight, I have finished the race, I have kept the faith. 8 Henceforth there is laid up for me the crown of righteousness, which the Lord, the righteous judge, will award to me on that day,…

  • Her Broken Heart.

    My baby was born with a broken heart. No, not like in the movies, where someone breaks her heart.  As in, Georgia was born with three congenital heart defects that were not found in utero.  They are extremely common among children with Trisomy 18, and sadly, the cause of most deaths.  Statistics used to quote that 90 percent of children with Trisomy 18 would not live past age one, but didn’t mention the fact that a large amount of these angel babies were denied life-saving care, such as heart surgery to correct defects.  These life-saving interventions would be offered to any typical child, but unfortunately, babies like mine have been…

  • The Medical Mom.

    Have you ever been so tired that the taste of cheap coffee seems like a blessing?  Have you, looking into the mirror, not been able to remember the last time you showered or even brushed your hair?  Have you ever cried in a doctor’s office, finally letting go of all that stress you’ve been carrying so long? The medical mama has. She’s held her child as they’ve screamed in pain from an IV or a catheter.  She has comforted her baby through the metal rails of a hospital crib.  She has found a way to smile in the face of a child who has endured more medical interventions than the…