HOME TOUR

 

This has been exhausting. This whole process. Learning to let go, say goodbye, embrace the new and look ahead. We see possibility, we scream it rather than choosing disability. We see our strong fighter, our wise warrior in his hospital crib smiling at the nurses and doctors who arrive to rip tape off his delicate skin. We see him trying to play, wanting to read with those big old dinosaur casts on. We’re thankful for America. Thankful we are lucky enough to call this place home.

Have jobs with such compassionate, truly thoughtful and dear coworkers…friends. We’re thankful for health insurance and the “best of the best” doctors in our backyard. We’re thankful for friends and family who sat with us through this ordeal. Who texted us, called us, were thinking of us. Who took our minds off what was so clearly out of our hands and impossible to process. The arms of a momma want to push all harm away from their wee ones, seek to guard and shield, and yesterday these momma arms had to surrender, part with and wait empty for a time while Cade was in the OR. It was as if I was a caged beast, and had we not community and family, I would have been pacing, probably foaming at the mouth.

This is all hard. Initial diagnosis, processing time, new baby, surgery. There’s no getting around that. Babies aren’t meant to lose part of themselves.

Moms and dads aren’t suppose to make these decisions. Babies aren’t meant to be in hospitals, surrounded with beeps and tubes, white coats and medication. Many people told me yesterday how great I was doing, how strong I was and it was almost irritating. This was survival. Choosing medical intervention so we could help Cade achieve his normal was so far from my heart’s desire. So far from anything I had ever hoped for for my future child. No, I had dreamed about cute clothes, nurseries, pushing a stroller through town. This is survival. And there’s no right way to do that but my husband assures me there are certainly wrong ways to do it.

Yesterday we arrived at 6 am. We checked in and waited, the ultimate description of Cade’s surgery day. We waited for the medical team, waited for surgery to be over, waited for the opportunity to see him in the PACU, waited for a room…waited. And all of it was hard. But there were so many blessings that came with that wait. Having my mom and dad wait with us which was never a guarantee and not taken for granted, having prayer warriors around the world thinking about Cade. Having our pastor present when Cade was taken away from me. The opportunity to have Matt carry him into the OR and hold him while he drifted away for a bit. Having our friends wait with us, entertain us, ultimately distract us from allowing your mind to go there. Having the courage to wait even longer for the possibility of a private room and because we chose that path, having the same nurse who took care of Cade when he was 3 weeks old, a familiar face in the midst of it all. Getting sleep. Having a baby that didn’t get sick from all the pain meds and was ever so brave with all the pricks and pokes. It’s remarkable. It’s God.

 

How do you process all of this? I would have never chosen it. NEVER chosen this hard road but I would have missed so much joy. My dear friend Kara spoke of this yesterday and I so related. How we often chose the easy road. As Americans. As humans we make decisions daily that reflect our desire for the easy rather than the transforming.   

 

We get mad when our journey is hard. Like we have control. And this is teaching me we have so very little. You do not get to say whether your child will be well, born with ten fingers and ten toes, so they say. You do not get to say that you will get that job you want or the house. You do not get to pick your story because so much of our story is just a reaction to all that is happening to us. And we question. We can choose to shake our fist at the heavens screaming, “you can’t be real because I call this unfair.” We can choose to say, “I accept this and choose to see blessings through the haze.” We choose our response to the life that is happening to us.

Pastor Jay read us portions of Psalm 73 as we waited for Cade to be taken away.

“Does God realize what is going on?” they ask. “Is the Most High aware of what is happening? Look at these arrogant people–enjoying a life of ease while their riches multiply. Was it for nothing that I kept myself pure and kept myself from doing wrong? All I get is trouble all day long; every morning brings me pain. If I had really spoken this way I would have been a traitor to your people. So I tried to understand why the wicked prosper. But what a difficult task it is…Then I realized how bitter I had become, how pained I had been by all I had seen. I was so foolish and arrogant–I must have seemed like a senseless animal to you YET I still belong to you; you are holding my right hand. You will keep on guiding me with your counsel, leading me to a glorious destiny. Whom have I in heaven but you? I desire you more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever.

 

Be careful how you choose to respond to the life you find yourself living. Be purposeful about counting your blessings. Realizing that you have so much. Choosing to keep moving, keep breathing. Focus your eyes on heaven because my friends, this story that is happening to us is temporal. It will end. Life is short. See the possibility when others see disability. And do it all in love because the lovely is all around.

When your baby has big, thick casts on, see the big happy dinosaurs that grace them.

When winter brings snow and we grumble, look closely, purposely choosing to see the intricate uniqueness of each and every snowflake. Turn your gaze heavenward. Do not be bitter by all you see, the politics, the pain. Gaze heavenward when it’s hard. I speak this to my soul as we wait for instructions from the hospital that took Cade’s little foot away. From the place that gave him the hope of a future normal. We choose to see the possibility not the disability and we choose to see God in it all.