I live in a creative community that inspires me. With my family and friends, I create...memories.

Tuesday, September 4, 2012


I pray for H-Bear to be completely healed of her CCHS.  I know tens, perhaps hundreds, others have prayed this for her.  Thousands across the country and around the world have prayed for children and adults with Congenital Central Hypoventilation Syndrome to be completely restored, their automatic functions to be intact, their need for machines to regulate their breathing while asleep, or even awake, to be erased.  And yet, there is not a single story of this happening.  A lack of faith?  I know many of these families, and I doubt it.

H-Bear has been healed.  When she experienced acute respiratory failure, she could have died, but she didn't.  Every night, she breathes so little on her own that she could perish or suffer brain damage, but she hasn't because of her mechanical ventilation.  She's actually very bright, with an instant lyrical memory that astounds even Mommy, the repository of ten thousand songs.  With each and every cold, that common bugger of childhood illness, she needs her BiPAP while awake, and even then, she sometimes needs more support and goes to the hospital.  And she is healed.  She returns home to life, with a gorgeous smile on her face and two dancing feet ready to take on Robert's Western World.

Do I wish she could be completely restored?  Of course.  Will I ever stop praying for this?  Of course not.  However, I think H-Bear's life and our faith journey as we raise and love her provide a lesson in expectations.  Instead of being totally healed, she is healed every day that she continues to live well and every month or so when a simple illness does not end her life.  Were she born 100 years ago, this would simply not be the case.  We would have lost her already.  I remind myself, she has been healed.

I am a perfectionist, and many of my friends are as well.  We are over-achievers and just getting by is not satisfactory.  We have been blessed with capabilities, and we are convinced that we should use them to the fullest.  It's hard for us to accept good-enough.  It's personally hard for me to invest myself so much in this little angel.  I will never be able to provide enough care for her; every medical decision we make for her has risks and drawbacks in addition to life-saving benefits.  There is no perfection to be grasped.  There is good-enough, and for this, we should be thankful.  Good-enough means we get to spend another day with H-Bear.

When we pray for her complete restoration, we exercise hope.  This hope may not be for H-Bear's time on Earth.  Perhaps she will never be totally healed in this life, but someday, she will be completely restored.  She will sing -- and dance!! -- with the angels.  When we expect perfection in this life and nothing less, we are sure to be disappointed.  We must remind ourselves of the blessings among the hardships of daily life.  H-Bear's story is unfolding as one of repeated redemption, blessing, and healing.  When our hearts focus only on the elusive goal of perfection, we lose the joy of celebrating what has already been done, for H-Bear today, this month, this past year, as well as the saving work of Christ that gives us hope for the future.

Throughout our marriage, Josh has taught me that when my expectations are too high, I will be disappointed.  I have tried to teach him to dream and plan and hope for the future.  Now, we live in a very present middle.  We need Josh's ability to be satisfied with good-enough and my dream-making hope.  Together, we can raise not only H-Bear, but also her big brother M-Cat.  We'll not attain perfection in raising him, either.  Only one Father is and has ever been perfect, and we must endeavor to adjust our expectations of our lives as we embrace the blessing of our children today.

1 comment: