Friday, May 16, 2014

LESSONS FROM CAMP: Cutting the Apron Strings

...The believers learned how to walk in the fear of the Lord and in the comfort of the Holy Spirit.
~ Acts 9:31b, TLB ~

"It's time to cut the apron strings!"  How many times do we mothers raising children with special needs get bopped over the head with that comment?  It seems that our kids are barely toddling when people decide we should back off and stop puzzling over how best to parent them.  Amongst the other unkind remarks we find ourselves subject to, people's implications that we are "helicopter parents" also seem to slam us more often than those raising typical kids.  The average person just has no understanding that parents raising a child with a special need or chronic illness have a whole added layer to their child-rearing.

I have told my children from very young on, "It's my job to train myself out of a job."


Also, being a woman whose best ideas are nearly always stolen, I swiped a phrase from my eldest daughter's K4 classrom aide to embrace at home, "I'm your aid, not your maid!"

Little did I know in their younger years that these phrases would mean teaching my kids life skills that most adults will never acquire.  Administering IV infusions is something I have had several friends claim they could never do, yet my 14 year old son is incrementally growing in his ability to self-infuse.  Identifying internal bleeding, knowing how to self-advocate in school or in a medical setting, determining when a rescue inhaler is needed to supplement a daily inhaler, ordering medical supplies and prescriptions, how high is too high on the Wong-Baker pain scale, and what constitutes an allergic reaction are just some of the protocols where my brood has had to develop discernment.

Over the 14 years of facing special needs in the family, it has become extremely liberating to develop a personal competency with each of my children's diagnoses and how they uniquely manifest themselves in our household.  And while I am not typically a worrier, it does help me keep my mind from getting too far ahead of itself when I personally educate myself on a diagnosis.  That translates into being a voracious reader and constantly networking with others to gather information needed to be the best decision-maker I can be for each of my beloved charges.

But what I learned while at German immersion camp with my son is that watching my kids develop that same competency, can actually make me feel sick to my stomach.  Realizing that you are in a remote location, nearly 540 miles away from home, your teenager having forgotten to pack butterfly IV needles to administer his infusion is not one of those breathe-easy moments as a parent.  (You can read more about it here.)  Still, I had to let go.  

Reflexively, I was the one who did the mental problem-solving about the situation at camp, not my son.  And his treatment center scolded me about that, as they should.  He was the one who should have called his hematologist's office to figure out what to do about this mini-crisis.  Nevertheless, once they called me on the carpet about it, I changed gears to let my son take over with making decisions about his treatment.  

His emergency shipment of needles was supposed to reach us at camp by 10 AM the morning after I had called the treatment center.  Given our location, I was skeptical, albeit hopeful.  When my skepticism proved valid as delivery time came and went, my son needed to make decisions about how he wanted to proceed.  That's a pretty huge responsibility, even for the most mature of kids.  

It was hard for me.  Still, I watched his wings unfold before me.  First, he decided we would make no phone calls or take any measures until noon that day.  The camp nurse contacted me suggesting that one option for him might be to go to the emergency room in town, if his needles never showed up.  Once noon came and went, he decided he was feeling pretty good, and had no desire to drive the 20-30 minutes to be treated at a strange ER.  More hours passed with me trying to distract myself.  My boy declared he wanted to play fussball with his classmates (also know as soccer in America).  I questioned whether that was the best choice as he had now gone 3 days without an infusion, but he assured me that he thought he could play without injury.  He was fine.  At this point, my son considered doing nothing to treat his hemophilia until he arrived home at 9 PM the following day.  I swallowed hard knowing the risk, but supported him in his decision nonetheless.

I don't think I fully grasped how incredibly stressful this whole situation was until the gentleman running the camp handed me the long-awaited box at 5 PM, 7 hours after its expected delivery time.  I privately dissolved into uncontrollable tears.  Having played it cool so as not to feed my son's underlying anxiety, I had unwittingly wound myself as tight as a top.  

I waited over an hour to let my son know that the needles had arrived.  Exercising his ultimate control, my boy decided that since we had gone this long without infusing, he would prefer to wait until the following morning to finally administer that overdue clotting factor.  I was completely fine with his choice, knowing that if there were an emergency, at least we had what we needed right there to treat at a moment's notice.  

The next morning, before all the other campers arrived for their final breakfast, my son infused himself with minimal involvement on my part.  Afterward, I did exert some of my remaining parental control by telling him that he needed to apologize to both of his teachers on the trip as well as the gentleman who runs the camp.  Until I spelled it out for him, he had no understanding that his oversight had 4 adults very concerned about him for 3 days.  He needed to see that his mistakes and his decisions didn't merely affect him, but others around him.

As gut-wrenching as that experience was, it probably did more for developing my son's personal responsibility and my relinquishment of parental control than any experiences at home could have.  He learned to be much more thorough when packing.  I realized how much comfort and normalization we have possessed, being able to infuse any time anywhere when we have the needed supplies.  We both expanded in our trust of God, realizing He had our backs in yet another trying situation.  In its own, painful-but-useful way, camp grew both of us exponentially. 
  
Much as I hate to admit it, we needed a tenuous event like this.  After all, now it really IS getting time to cut those apron strings.

PRAY:  Lord, You  spend so many years developing us into great caregivers and advocates for our children.  Comfort us when it is time to start letting go.  Holy Spirit, give us the fortitude to allow our children to make mistakes and suffer the consequences, even though we are scared.  God, remind us that You love our children infinitely more than we ever could, and You are with them every step of the way.

~ Barb Dittrich

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