How do I deal?

I haven’t forgotten about his birthday, but I somehow forgot about the events leading up to them.  Somewhere between discussing labor with a new mom last night and finding myself, very last minute, at a Hillsong concert – It came like a wave, that whole “at this time nine years ago I was in the hospital, hours away from becoming a mother” …you know, that kind of sentimental-mom-factoid.

Any kernicterus mom can tell you, birthdays can be tough, mainly because of what comes next.  There is the day that follows soon after – the day our child faced death and came out scathed…the day our children were forever changed by jaundice.

Someone asked me today how I deal with the fact that the poor decisions of health providers left my son permanently disabled (mismanaged newborn jaundice caused kernicterus, complete with a wheelchair).

What a question.  How do I?

Christine Caine spoke of how she dealt with 12 years of abuse in her past.  She reminded me how I deal with what happened.

The only thing worse than living with kernicterus for nine years would be thinking that kernicterus is the end of the road.  (Aaaand by “kernicterus” I mean the nursing stuff, the feeding pump, the equipment, the back pain, scheduling therapies and docs, sleepless nights for years, managing meds that only do so much, but I also mean THE FEAR..the fear and anger that are forever tapping on your door and threatening to erupt at the slightest medical issue or rude stare.)

I’ve spent years writing my own psalm-ish cries.  I’ve cried in the shower.  I’ve mourned the loss of my boys abilities (in Sam’s Club and in private). …but that’s not all.  I’ve repented in dust and ashes…because I just don’t know the whole story.

He’s still writing this one…and it’s bigger than kernicterus, bigger than me, bigger than Blue, bigger than our family, …and I’m pretty sure kernicterus isn’t the end.

I deal when I learn to trust, when I stop the mad struggle against the pain.  Fighting only makes it worse.  (and by “fighting,” I mean the anger, not advocacy)

When I surrender, when I lean in, when I count the good things that stack up higher than you’d imagine (especially those exquisite ones that you can only see from the corner)…that’s when I really “deal” with what happened, that’s when I am fully alive.   It’s truly amazing, this grace!

So on this day, at this time when I was minutes away from that final push, from meeting this Blue eyed boy with the smile that lights up the world, on this day, I give thanks for my boy, for his life, and for the creator that isn’t done creating…I celebrate my boy’s life and I push on!

For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. Ephesians 2:10

One thought on “How do I deal?

  1. Wow.. your words- what a gift you have of gut wrenching expression!! I’m typing through tears…Your words are how I feel but have difficulty putting on paper. We all want to wish Blue a very HAPPY BIRTHDAY!! Feel like we know you all! Would love to come see you this fall. Let’s make that happen! Love- Dana & Rees:)

    Sent from my iPhone


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