Honest Kathryn is here today, so I apologize in advance for my candor.
No matter how many times we go back into the beast, it just never gets easier. And, it’s how I know that PTSD (post traumatic stress disorder) is a real thing. Because, no matter how many times I hear “he’s going to do great!” or “you’ve got this!” or “that kid is tough!”, I can’t shake the trauma that is Dell Children’s.
I keep catching myself crying at weird moments. My heart knows it’s normal, it’s just hard.
I’ve heard many folks sing Dell’s praises:
“The child life department is so awesome.”
“Have you seen all that beautiful artwork in the hospital?”
“The nurses and staff are so accommodating and wonderful. They really understand kids.”
But you know what my heart sees when we walk in the door? I relive every horrible, dark moment of Luke’s life.
I remember the specialists crowding around his bed for his last major surgery because his blood levels were cratering, his belly was blowing up like a balloon and his pain had spiraled completely out of control.
I remember crying in his room because the damn pediatric surgeon forgot to write the order he could have something to eat, so I rocked a screaming baby for five hours until the 6am shift change.
I remember that inmate calling collect from the Travis County jail calling – TWICE – and waking up my sleeping child. That evoked both tears of disbelief and levity.
I remember spending 14 hours in the ER before finally being placed in a room. Just 24 hours post-discharge from surgery.
The Luke road is so complicated.
Going on seven times of being a Dell Children’s resident I have learned one very important lesson: I have to grieve what was lost before I can celebrate what we’ve gained.
For me, there is always, ALWAYS a Kleenex moment (or 5,000) before there is joy. It’s how my heart works. Surely God must be thinking: DAMN woman, just let me take the reins. I’ve got this. And, indeed He does.
During Luke’s pre-op appointment yesterday, our nurse peeked her head around the corner and introduced herself. Lourdes. Yes, Lourdes. Not only were we blessed with her yesterday, but she will be our nurse on Wednesday morning before surgery.
At church on Sunday, Luke was being quite the stinker. I scooped him up and we made our way to the back of the church, in one of the art alcoves. Just as I glanced up, the saint who always has my back was peering right back at us. God bless St. Therese of Lisieux. She has been there with us every single step of the way. I never cease to be amazed at how I see God through her. Always in the smallest of ways.
It’s completely irrational, but I cannot shake the mom guilt. And there ain’t no guilt like NICU mom guilt.
I said it in 2009 and I still say it today: Luke, if I kiss you enough, hold you enough, pray enough – can I love all the challenges away? So much of what the world sees says, “Dude, that kid has zero problems.” And I am 100% grateful for that. We have worked so dang hard to get there.
It is a difficult balance, to know the challenges that lie underneath, beyond the average person’s sight, but ever-present in my heart.
The heart defect that earns him a lifetime of monitoring. The pelvic kidney which means no contact sports. Ever. The tethered cord that means he’s at a higher risk for scoliosis. The eating that has a ways to go but that has come light years in just 30 months. The weight gain we’ve managed to see go up, but still not on the chart. The potty training that still eludes us because of his sweet, sweet, sensitive gut. The fine motor skills that come so easily to every other kid but him.
And yet, beyond all that, I just see a little boy who loves Cars 2, Phineas and Ferb, Johnny Football and DudePerfect. He is blissfully unaware of any of this drama. This craziness. He only feels the love.
I think I could learn a lesson from him.
Tonight and tomorrow, as you offer up prayers for Luke and our medical team, please know how deeply grateful we are. Like State of Texas thankful. Like Texas A&M Aggies National Football Championship grateful. Hey, it never hurts to add that one to the prayer list.
Specifically, please offer up wisdom for his surgeons, a smooth surgery, an effective pain management plan, a tender belly that doesn’t freak out, a decent night’s sleep (you know, two hours in a row would be fab) and protection over our other children. When we are gone, we know it affects them greatly. The older ones are keenly aware of what is to come and I know their hearts worry as much as ours.
When we first began this journey, there were some lovely Sisters who entered our lives. #godmoment
For every surgery, every setback, every moment when I felt like I couldn’t do it one more damn minute, in walked a Sister. On July 31, all of those awesome Dominicans will be in Ann Arbor renewing their vows as Sisters. I can’t think of a better day for Luke to be on the surgery table than when over 100 Sisters say, thanks be to God for religious life, God, I’m at your service. I know they have us in prayer. Sr. Maria Gemma sent me this prayer nearly four years ago. I loved it so much I retyped it, laminated it and put it up in my office.
I hope it brings you as much peace as it does me.
Pound it. Noggin.
See y’all at 0730 tomorrow morning. Surgery time.