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.
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.
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.
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.
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