Tuesday, September 14, 2010

What You Don't See

"Teach me what I cannot see..."  (Job 34:32, NIV)

Today's post comes amidst a swarm of blog entries being made in honor of National Invisible Chronic Illness Awareness Week.  While I can quote you the statistics that an estimated 1 in 2 people having a chronic illness or that 96% of all illnesses being invisible, my experience in legislative advocacy tells me that personal stories are always the most effective.  In sharing our family story, perhaps you will find something to identify with or grab onto in order to educate others. 

The challenges of invisible illness actually faced us head-on when I was pregnant with my second child.  Having 2 nephews who lived on the other side of the country diagnosed with severe hemophilia, we knew this genetic illness, occurring mostly in males might run in our family.  It was essential that we assure a "gentle delivery" of any boy we might give birth to.  After our genetic ultrasound revealed that I was carrying a son during my second successful pregnancy, our concern began to rise at the possibility that he too may have hemophilia.  We prepared for testing of the umbilical cord blood and made arrangements with all involved to assure a safe delivery.  That's when the ignorant comments ensued. One individual assured me that I was worrying about nothing because they had never heard of that happening.  If only we had known how frequently we'd visit the "I've never seen it before, so it can't possibly be," mentality over the years to come!

Joy became mixed with tremendous grief when our son was born and subsequently diagnosed with severe hemophilia A.  From day one he had what is termed an "active bleeding pattern".  Most of those born with this disorder get a "honeymoon period" where the baby does not experience bleeding episodes.  We never experienced that luxury.  Visits to the hospital 30 miles away occurred a minimum of 2-3 times per week as our boy received IV infusions of clotting factor.

There was so much people didn't see.  The painful hematomas or joint bleeds hidden from the naked eye required frequent infusing.  Because of the rare nature of his disorder, the expensive medical bills for his clotting factor and treatments added to the enormous stress of adjusting to his diagnosis.  And the physical pain he would endure that was not visible to the naked eye was heartbreaking.  People would never see the battles we privately fought to be allowed to infuse him at home prophylactically 3 times per week.  When I was juggling his care with a high-risk third successful pregnancy, even my OB-GYN didn't have compassion or understanding.  Faced with troubles getting venous access while his younger sister's early birth was imminent, my doctor shrugged her shoulders stating that if needed, my husband would just have to head to Children's Hospital with him for treatment while I came to our local hospital to give birth.  Nobody but my husband and my delivery nurse saw as I stood there in my hospital gown, post-partum giving him an emergency infusion in my hospital room because to otherwise stop the bleed flowing from his mouth and nose, my husband would have to walk him down to the Emergency Department for admission wasting precious time.  Not even his hematologist had a reasonable understanding of what this poor boy endured when he was hospitalized at age 4 with a gastrointestinal bleed, undergoing 12 IV catheter pokes over 3 days and facing a life-endangering situation.  There was little compassion, direction or comprehension from any people, medical or otherwise, when our son faced subsequent post-traumatic stress disorder, requiring years of psychotherapy and medications that further risked his life and sanity.  All the while, we faced the angst of those IV infusions at home 3 times per week.  In the privacy of our home, others would never witness the pools of frank blood coming from our son's repeated nosebleeds that left our kitchen and bathrooms rivaling any television crime scene.  Only a select few had some grasp of what we encountered in working with local schools regarding these ongoing hurdles.

I could go on in detail about our son, but I think you can grasp that there was so much that people would never see or understand.  And who was to know that his younger sister would be facing many invisible battles of her own.  Since her toddler years she was found to have numerous severe allergies to a wide variety of prescription medications, including the ADHD drugs she was given after that label was put on her.  Over the years, her sensory issues have revealed themselves in increasing measure affecting hearing and touch.  All the while, despite our confidence in realizing what we face, the disgust and judgment from others regarding our parenting skills of this child continue on.  It leaves others, and myself when I have time to reflect on it, wondering how a mother and father can persevere through these trials that are mostly under the radar screen of the typical population.

The answer to that query is that there is one more huge thing that is unseen.  Power, love and compassion pour out of our unseen God.  Jeremiah 23:23-24 in The Message translation says, "'Am I not a God near at hand'—God's Decree—'and not a God far off?  Can anyone hide out in a corner where I can't see him?' God's Decree. 'Am I not present everywhere, whether seen or unseen?' God's Decree."  What strength and comfort has been given to our family over the years experiencing the truth of this Scripture!  When we felt we couldn't make it, God was there to rescue us.  Whether it be financial provision, a listening ear or an extra set of hands to help us, our trust in Him has never been misplaced trust.  Even if we haven't seen or felt His presence in a situation, He always eventually proved He was there, giving us the assurance that He will be there when we need him next time.  If healing hasn't been in accordance with His will, He provided the endurance required for us to survive an ongoing trial.  As we cry out, "I can't", He never fails to prove He can.

None of this may be seen by the naked eye.  The illnesses and the trials they bring with them may be invisible.  But so is the amazing help we receive!  God's hands hold us upright and allow joy to prevail in our lives in spite of our circumstances.  That's not something a person can necessarily grasp with their hands or see with their eyes, but it heals our hearts in the same fashion that we suffer -- privately, secretly, perpetually.

If you don't live with an invisible illness, open your ears and your hearts to those who do.  They have a great deal to share with you that will grow you in profound ways that you could never imagine. 

If you do live with an invisible illness, but lack this invisible help, call out to Him.  He promises that you will find Him when you seek Him with all of your heart! (Jeremiah 29:13)

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