Friday, April 12, 2013

Conquering and Committed

Thirteen years ago today we received the shocking news that our day-old son had been diagnosed with severe hemophilia.  It felt like the world was going to end that day.  Here was this tiny, helpless newborn whom we had endured months of infertility treatment to conceive, now diagnosed with this dreaded disease.  I could even hear the nurses crying in the hallway outside of my hospital room.  The future was so uncertain.  I wept with anguish and guilt as I held this precious infant, still curled in fetal position, and stroked his feather-like fingers.  How?  Why?  

It didn't take long before we became well acquainted with his hemophilia.  The disorder behaves uniquely in each individual diagnosed with it, and he was no exception.  Our son has always had an "active bleeding pattern."  Having a high bilirubin count, as did all my babies, the heal prick to draw blood would result in endless bleeding.  The baffled hematologist proclaimed that this wasn't a typical way for hemophilia to behave, but it was happening.  Our pediatrician admitted our son to the NICU at two days old until we could control the jaundice.  

We never did have the "honeymoon period" where his hemophilia was barely noticeable, like the treatment center told us we would have.  Whether it was suddenly finding a giant hematoma (raised, hard bruise) on his soft baby body for no reason at all or it was yet another head bump as a toddler (earning him the nickname "Crash"), learning to live with this bleeding disorder has never slowed down.

Some serious challenges have confronted us.  The first time our son had an ankle joint bleed, it took my breath away suddenly seeing his ankle look like an old lady with edema.  Injuries at school have been harrowing to the point where I still jump when I see the school district's phone number on the Caller ID.  The countless cauterizations he has endured after persistent episodes of hours and hours of nosebleeds has been tremendously disruptive and upsetting over the years.  The fear and utter sorrow when he was hospitalized with a life-threatening gastro-intestinal bleed at 5 years old is as fresh as the day it happened.  You never forget hearing your son cry out in pain, "Mom! Dad!  Make them stop!  No more needles!  You're supposed to protect me!"  And having to return to the hospital for another life-threatening bleed in his hip joint when he was 11 years old wasn't much easier.

Nevertheless, we have never walked through all of this without Jesus.  We have long been aware of the unique intimacy we enjoy with the Lord, because we know that if we share in his sufferings, we also share in his glory. (Romans 8:17)  How greatly I can identify with Mary watching her own son suffer so terribly, by watching my own son suffer, being helpless to do much about it.  And I also identify with God the Father, having some small inkling of the heart-wrenching pain evoked by hearing your child cry out, "My God!  My God!  Why have you forsaken me?" (Psalm 22:1) 

Since he was a small boy, we have poured the words and hope of God into our son.  Our greatest failure, in our opinion, would be to have him leave this world in an unanticipated trauma, never having known Jesus.  Walking with the Lord has been as natural as breathing in our household.  And I so often have reminded him that his hemophilia is his "secret super power to reach people for Jesus."  It has been incredible to watch him bear witness to God's faithfulness in a medical setting by not letting anyone touch him until he prays out loud first.  With the help of a phenomenal youth group at church, his spiritual growth has never failed to thrive and his faith has become his own.

So here we are at thirteen years.  He is currently learning incremental steps to overcome his anxiety and to learn to administer his own IV's every-other-day.  When I told him this morning that today was the thirteenth anniversary of his diagnosis, he said to me, "Great!  Do I get another new laptop like I did yesterday for my birthday?"  Oh, how things have changed in thirteen years!  We are all greatly heartened that he has reached a point where he realizes that he has hemophilia, but it doesn't have him.  Life is hard, but God is faithful.  His love and grace are bigger than any diagnosis or trauma we can ever face. 

PRAY:  Lord, when problems abound, Your grace abounds more.  May I never forget that.  Remind me of all you have brought me through when the present or future look bleak.

3 comments:

  1. Your faith is a testimony! Thank you for sharing your heart.

    http://bakerisourdreamcometrue.blogspot.com/2013/04/the-upside-of-down.html?m=1

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  2. Beautiful testimony of God's love; your trust and the strength and comfort only He can bring.

    My sister is diabetic, diagnosed at age 10. We were told she might live until 40. She is now 62 and going strong.

    Praying for you and your son - Look to God for everything.

    Blessings,
    Janis

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  3. Happy Birthday, Happy Anniversary and God Bless! Without you, he would have not seen the light, without him, you may have never visioned Snappin.

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