When Your Priest Has a Chronically Sick Child

(note: this is a post from 2013 when our daughter was still in the midst of her 6 year ordeal through our Children's Hospital -- I repost it now in light of several friends who have chronically sick kids.  Our daughter experienced what we have been so bold as to call miraculous healing while I was in Nairobi in Oct 2013, only months after this post was written, and she has never been back to Children's Hospital since! soli Deo gloria)

April 29, 2013

"Thanks for praying for us.  She's home.  She's doing better. We're recovering alright. God is good." 

I find myself saying these words so often, as concerned parishioners ask about our most recent trip to CHEO (The Children's Hospital of Eastern Ontario). I love being asked, and I love testifying to God’s healing power in my daughter’s life. These are just a few thoughts about pastoral ministry with a chronically sick child, and I write them after spending last night at CHEO (so please forgive me if these thoughts seem rather unorganized).  Perhaps writing this is more for me than for you.

For the sake of those readers who don't know, my 8 year-old daughter "Bean" (this is her online pseudonym) has been chronically sick for over 5 years with a recurring metabolic disorder.  This particular disorder lands her in CHEO’s Emergency Department on average once per month where she needs to be rapidly rehydrated intravenously, subjected to blood tests, and given some heavy meds. If you’ve been at a pediatric hospital, you’ll likely know that they have staff who (among other things) are specifically hired to assist with giving kids IVs (literally, holding them down).  To give an idea of how many times Bean has been poked let’s just say that too many kids like her would put these “holding” staff out of work.  No one holds her down.  She simply holds my hand (perhaps more for Daddy’s sake?), puts out her little arm, and closes her eyes. She doesn’t fuss, nor move (and this is without numbing cream).  Her CHEO stay is usually between 8-12 hours, but sometimes she gets admitted for several days.  When she isn’t sick, she is a busy, active, and a bundle of energy.  But she gets sick fast, without warning, and it is nearly always emergent.

So, my dear parishioners at St Peter & St Paul’s (and dear readers beyond the parish), what words do I want to share with you about having a rector who has a chronically sick child?

1) We love to hear you ask how she is doing, and to tell us you’re praying for her.  This never gets old for us.  It is never annoying.  It is a reminder that you know.  Perhaps you don’t know how precious it is to us to know you are praying for Bean. I often post on Facebook when we’ve gone in (if my phone has enough charge), and seeing your prayer comments truly help us cope. Our bishops have been amazing -- praying with us over the phone, and calling the folks to pray at whatever gathering they may be at (once the entire ACNA House of Bishops were praying for Bean -- what a picture of episcopal ministry!). People often ask if we have any “practical needs” and, aside from meals, which are hugely helpful, prayer is the most practical need we have at these times. So keep praying, and never hesitate to ask.

2) As is the case with all who have chronically ill loved ones, questions about diagnosis are less than helpful. “Has she been tested for allergies?” “Is it a gluten issue?” “You should have seen what was on Dr Oz the other day!” I write these with a smile on my face because I know they are meant with the best of intentions. But people just don’t know how thoroughly she has been tested. One of the most frustrating aspects of Bean’s health is that after 5 years we still don’t know what the underlying root cause is.  The disorder she has been tagged with has literally hundreds of potential causes. She has seen an army of specialists, has her own pediatrician, and we still don’t know. Thank God we know how to effectively treat the symptoms regardless.  

3) Working in a team setting is amazing.  The fact that I have a small army of clergy as colleagues at this parish means that I can confidently delegate responsibilities when Bean gets sick. Normally, if I am preaching on a Sunday, Monika and I will coordinate with my parents or her mom, so that I leave the hospital for the few hours necessary to make Sunday services (see point 4 below).  However, today was a beautiful example where I simply didn’t need to attend because Fr Greg was celebrating and Norm was preaching. Our family was praying from CHEO.  Our dedicated staff help me rearrange appointments when needed, and uphold us in prayer constantly.  I am never anxious about the parish during these episodes, but am instead freed to put my focus where it needs to be. 

4) I have an amazing wife.  I am often back to work the day following a CHEO trip.  We get home, rest up as much as possible, make sure Bean is truly recovered, and then I head back to work.  Not that anyone has ever asked, but it is a legitimate question to ask if the rector’s work is impacted by these regular episodes.  Of course my work is impacted, but it does still get done.  I work the same number of hours on these weeks as any other.  All of this is due to having a wife who is as committed to the work of the church as I am.  She understands that the church year waits for no man, and she understands that the timing of many of these sick bouts implies the devil’s work.  Bean was at CHEO days before I headed off to our Eastern Assembly, she was admitted for 5 days the week of this year’s AGM, and has gone in on many Saturday nights when I was scheduled to preach something particularly difficult the next morning.  Part of us treading Satan under our feet is declaring that these episodes are not going to stop the work of ministry.  Paused, for sure.  Delegated, often.  But the gates of Hell shall not prevail against the Church.  My wife is amazing.

5) But none of what I wrote above works unless I am committed to my family first.  This is nothing special, nor qualifies me for a “SuperDad” mug.  My wife and kids know that I will drop whatever is necessary to serve them first.  Sometime it takes creativity, several quick phone calls, and relying on my colleagues, but my family knows where my first commitment lies.  When Bean gets sick, she knows that Daddy and Mommy are there for her.  I hope I don’t even need to write this.  But I fear that there are too many examples of pastors who have sacrificed their families on “the altar of their ministries.”  I firmly believe that the same Lord Jesus who called me to priesthood, is the same one who called me to marriage and fatherhood, which includes being Daddy to a chronically sick child.  Jesus Christ doesn’t call us unless he intends to empower and sustain us in that calling, if we continue to heed his Lordship.

6) Finally, we have grown incredibly through these past 5+ years.  I have grown in my compassion for those who suffer.  I am very comfortable in hospitals (perhaps “familiar” is a better word), and I have a much bigger heart for people who are suffering and weak.  Additionally, my view of healing has grown. I’ve preached on this with much confidence from experience. We have seen Bean supernaturally healed at home thus avoiding a CHEO trip (ask Monika sometime about one time when she held her up arms over Bean for hours and the disease was beaten back -- see Exodus 17:11-12). We have seen the Lord heal her again and again through his good gifts of medicine and medical staff.  We thank God daily that we live in a city with a Children’s Hospital in it. If not, I don’t think we could live here.  Our perspective on trials has grown. We are so very very blessed.  Sure, sometimes we will say, “Why Bean, Lord?” But, we have grown to see how good we have it.  Spending time at a children’s hospital reminds us that there are kids who are so much more sick than Bean.  Some won’t go home.  Finally, my faith has grown.  When we come to the hardest moments, all we have left is the question: will we trust the Lord? Will we trust his love and goodness?  Will we trust his power and authority?  Bean was born very sick, and when she was 36 hours old, as Monika rocked her in the ICU nursery, I was losing my mind as I feared for the life of our child.  I said to the Lord, “We need a new doctor!” and I heard clearly the words of Psalm 20:7 “Some trust in chariots, and some in horses, but our trust is in the name of the Lord our God.” In that very moment, Bean’s health radically turned around, and she was healed.  The Lord was preparing us there for hundreds of hospital trips, because I now pray that verse every single time we go into CHEO.

This post has been much longer than I had anticipated.  I could say much more, and I could have been much more careful as I wrote (instead of stream of consciousness), but what I have shared is a bit of my heart after a long night and day.  I love being rector in this parish, and I am so blessed to have a parish that loves us so much -- especially on days like today.  So, Thanks for praying for us.  She's home.  She's doing better. We're recovering alright. God is good.

Comments for this post have been disabled