Shoe Fall, Don’t Bother Me

The weight of always waiting for the other shoe to fall is exhausting. Waiting for the “what if” to happen and always being on edge knowing it IS coming…. an ER trip, an ambulance ride, a hospitalization that could possibly be the final curtain call on your child’s life. These are things “normal people” don’t have to contend with. For my family, we are always in fight or flight mode, whether we want to be or not. I literally carry an ambubag around with me waiting for the moment I have to use it in an attempt to save my son’s life [again]. For families like mine, this is just a typical, run of the mill day of the week. Nothing to see here…

I mourn the loss of enjoying my kids’ childhood. I miss it dearly. I see parents around me who are actually just enjoying their children. They’re taking them to ball games or amusement parks, staying up late watching movies, going to a skate park or a concert. Just enjoying life alongside their children.

My child is work. I’m working nursing shifts. My son’s existence requires 24/7 care. An actual nurse works here in my house and makes a full living and receives insurance benefits because my son exists. I don’t say that to complain; I say that to emphasize that keeping this particular human being alive is work. It’s a J-O-B. Well, more of a volunteer gig for me, but still.

The unfortunate thing of it all is, my other two kids feel the consequence. I can’t fully enjoy their childhoods either. I’m so preoccupied with wondering if I’ve given all of Hayden’s meds, if it’s time to cath him or time for a feed, time for his breathing treatments, time to administer the bowel program, remembering which phone calls I need to make for the day for refills, appointments, dealings with insurance companies.

Everyone has their own problems. I completely understand that. And though mine are so much more intense, I do recognize that no one’s life is perfect and no family is perfect and pleasant and fun all the time. But I would venture to say, for the typical family, the opportunity to have fun easily is more feasible. Our family does have fun, but it is work to master it all. Yet we do it. Because we want to enjoy life, no matter what it looks like. Life is a gift and we try and treasure each day we’ve been gifted and use it to the most of our ability.

“Many are they who say of me, ‘There is no help for him in God.’ But You, O Lord, are a shield for me, my glory and the One who lifts up my head. I cried to the Lord with my voice, and He heard me from His holy hill.” Psalm 3:2-4

The Struggle is Real

On this October night, as my eight year old son lays in his bed in the Pediatric ICU, I can’t help but reflect on another October night when my infant son laid in his warmer in the Neonatal ICU fighting for his life. Fighting is nothing new to Hayden. He’s done it since the day he was born.

Hayden’s journey in the NICU lasted a total of seven months. And although that journey had many, many ups and downs (more downs than ups it often felt like), there is a day that forever stays with me and has marked my heart permanently. On October 18, 2007, Hayden was severely ill and septic. The infection was ravaging his body and on the night of October 18, a doctor opened up Hayden’s belly having no idea what she would find, but with all hopes of saving his life in the process. The infection she found was from his small intestines, which were destroyed by no flow of blood to them due to a blood clot (cause unknown).

At this point in Hayden’s journey, he had been in NICU for two and a half months and I blogged daily on our CarePage to update our family and friends. This was how I communicated to our prayer warriors and asked for specific prayers for things going on with him during his lengthy hospital stay. It wasn’t until this night, though, that I truly became one of those prayer warriors.

From the minute this child entered the world, he has faced challenges. When most babies are doing skin to skin bonding with their mothers a few hours after birth, Hayden spent his “Day of Life 1” laying alone on an OR table having his back sewn shut to close the defect on his spine. And that was just the tip of the iceberg for him. The details are too many to share in one post – I’m saving those for my book one day.

In a post on our CarePage, I wrote about that frightful time during the worst of the “NICU Chapter” of life:

October 18, 2007 12:01pm

His kidneys still aren’t working properly because he’s not getting enough blood to them so they’re not making much urine. So he’s not draining off any of the fluids he’s getting through his central and his new IV they placed last night. Today’s goal is to get the kidneys working better…..They placed an IV last night and gave him blood and other clotting blood products. They also placed another art line so they can get an accurate blood pressure on him. He’s now getting fentanyl on a drip to keep him knocked out and help with pain. He’s also on dopamine to regulate his blood pressure and concentrate the blood in his veins better. The dopamine should help bring his heart rate down which had been at 220 most of the night last night. He’s normally at 144-160ish….Sorry to report such bad news…Please pray for Hayden. He does not look well and I know he doesn’t feel good at all. Please lift us all up. I apologize if this is a bit choppy…so much is happening right now…

I remember each detail from this event. I remember where I stood in the hallway making phone calls to Ryan and the grandparents saying to “come to Houston – NOW.” I remember the fear of thinking I would lose my baby. But most importantly of all, I remember being on my knees pleading with God to not take my baby. Until this point in this journey, I prayed luke warm prayers thinking He wouldn’t answer me the way I wanted, so why bother. Hayden kept having issue after issue during his stay up to this point, and although I would tell my prayer warriors exactly what to pray for (that Hayden wouldn’t need a reflux surgery, that Hayden’s brain would figure out how to tell his body to breathe on its own, that Hayden’s vocal cord that was paralyzed would miraculously start moving again) none of these requests had been answered. I was frustrated, tired, and my hope was fading.

But I realized it is much easier to put all of your faith in God and trust Him when you’ve truly got nothing left. I was at rock bottom. There was nothing I could do to save Hayden. The doctors were already doing all they could for him. The only person who could save him was the Great Physician. And on this night, I prayed with everything left in my soul.

On my hands and knees, I pleaded and asked God to not take my baby. The exact words I prayed were, “Please don’t take my baby. I don’t care how hard it will be, please don’t take him from me.” And God heard my cry. He answered my prayer.

I know that sometimes people are certain to look at my family and my situation and wonder why God would allow such suffering to happen to Hayden, to us. Why would He let this happy child be required to use a machine to breathe for him every night to keep him alive? Why would He give him beautiful long legs, but not give him the ability to walk on them? Why would He put such a funny, happy spirit inside this child, but make it nearly impossible for his body to coordinate the functions to speak and to be understood?

I have no idea why. I know there IS a why. But it’s not my business to fully understand it in this life. But one thing I do know, is when I see my son shine through his struggles, all I see is an answered prayer. I told God that I didn’t care how hard it was, I wanted my son to be here on earth with me. And He heard my cry. I knew it would be difficult, but I knew more than anything that I was meant to be here caring for Hayden each step along the way. Let me clear here, there are days when it is overwhelming and feels too difficult to handle. But that is when I hear the words of my prayer coming back to me in the back of my mind and my perspective of “difficult” changes.

In a reading from Acts 20:22-24 when Paul is giving his final address to the Elders at the church of Ephesus he says, “And now I am bound by the Spirit to go to Jerusalem. I don’t know what awaits me, except that the Holy Spirit tells me in city after city that jail and suffering lie ahead. But my life is worth nothing to me unless I use it for finishing the work assigned me by the Lord Jesus—the work of telling others the Good News about the wonderful grace of God.” I have to say I agree with Paul. I knew good and well that October night as I pleaded with God, that suffering, heart ache, sleepless nights, struggles, sicknesses and pain may lie ahead but it was so worth it to me. The thing I didn’t realize then, though, was what an amazing plan God had for Hayden and the impact that he will make on God’s kingdom. I’m blessed to just be along for this ride.

Without Hayden and our struggles, I’m not sure where I would be in my walk with the Lord. I’m thankful for the suffering in this life. If it’s the work assigned to me by the Lord, then I plan to use it for His work; because otherwise, it is worth nothing. This life is my platform and I plan to use it to shout “the Good News about the wonderful grace of God.” So when you see my family, please don’t just see the suffering – see my answered prayer.