Monday, April 11, 2011

The Day Special Needs Came to Town





Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.~ Romans 12:2, NIV


Our son's birthday (He turns 11 on 4/11/11.) always brings to mind our introduction to a life with special needs.  You see, having had two cousins with hemophilia, a genetic disorder that can run in families, his umbilical cord blood was tested at birth.  The day after his birth we received the serious news that our son had Severe Hemophilia A.  And it turned our world upside down.  While this bleeding disorder will remain with him the rest of his life, most notable in the early days was the way it changed us.

 As with all of my children, our son had jaundice right after birth, so we underwent "baptism by fire" with his uncontrolled bleeding from the heel pricks of testing bilirubin.  In a flash we were in the neonatal ICU with him receiving his first infusion of clotting factor.  My heart just broke as I saw him and all of the other newborn babies fighting these medical battles just out of the womb.

Since I had volunteered and been on the Board of Directors for our state's hemophilia foundation for over a decade prior to our son's birth, I was well-connected when we received the diagnosis.  A mere month after his birth, we found ourselves at a regional conference for hemophilia.  I reeled in shock seeing children with deep, large bruises in unusual places and adults on crutches.  Reviewing information handed out I saw photos of toddlers with badly bruised behinds from falling while learning to walk.  I went back to our hotel room and sobbed in disbelief that this is what our life would be like.  "We can't be one of these!", was all I could think.

Only months after his birth, my husband found himself "downsized" in a corporate merger.  In order to qualify for the extended COBRA carryover insurance that our family would surely need with our son's expensive diagnosis, I had to fill out paperwork to get him deemed "disabled" by the Social Security Administration.  Having the letter of determination arrived with that label placed on our son was another time of great sadness and disbelief.  Even though we needed the help it would provide, the pain of our new reality was a great heaviness to bear.

Fast forward two years after his birth, and God had called us to minister to other parents just like ourselves.  Since we had a calling but no education, we attended a disability ministry conference in another state for further training.  Much to my surprise, I found myself in another phase of denial.  The wheelchairs, walkers, sign language and unusual behaviors all brought me back to the feeling, We can't be one of these!

I share these emotions not to offend, but to share how God transformed us.  He moved us from repulsion to acceptance, from grief to joy.  He helped us redefine "normal" in our lives.  When special needs came to town an moved in with us, it made us new people.  It increased our wisdom, understanding and compassion.  Ironically, special needs decreased our level of worry and increased our level of flexibility.  We became stronger, not by our own strength, but by the power of the Holy Spirit taking over in our lives.

Had it not been for special needs we would not have entered into this ministry.  We would not have touched other lives with a message of hope.  We would not have a powerful story to share to encourage others.  We would be more self-centered and less concerned for others.  We would not be focused on the important things in life the way we are now.

The day our son was diagnosed, my husband and I held hands and tearfully prayed together, "Thank you, God, for hemophilia.  We don't know why we are thanking you for this, but we know you will do something good with this."  While our lives are difficult and often heartbreaking, we have the gift of perspective.  And we can now smile in hindsight as we say that we became truly blessed the day special needs came to town.

2 comments:

  1. ♪♫•*¨*•.¸¸♥¸¸.•*¨*•♫♪
    Happy Birthday to you
    ♪♫•*¨*•.¸¸♥ ¸¸.•*¨*•♫♪...

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  2. Wow, thank you for sharing Barb. I think that all of us had that early revulsion moment, so I found it not offending, but so familiar. I remember looking at a mom whose adult son has special needs and thinking "Well, God, she might be able to live with this, but I sure won't!!!" And yet you are right, God gives us great joy in this journey and he sometimes gives us wonderful glimpses of the amazing ways that he is touching lives through this. Thank you again. Reading this was a blessing today.

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