Wednesday, December 2, 2015

I Am a Special Needs Parent Too - The Truth That Leaders Like Me Aren't Telling You

I cannot shout any louder. Eternal One—hear my cry
    and respond with Your grace.
~ Psalm 27:7, VOICE ~

"Everybody wants a piece of me, man!" I joke in my better moments.  Life is interesting when you are pushed and pulled in multiple directions at once.  

No one understands that like the parent raising a child with a diagnosis.  Besides the usual parental roles of working and child-rearing, special needs parents are expected to be diagnosticians, therapists, triage nurses, special education experts, insurance benefits specialists, community advocates, and social skills intermediaries.  The time other parents get to enjoy in extracurricular activities or spending disposable income are spent in mere survival and countless appointments for parents of challenged children.

Now add to that complexity the role of leadership.  Thirteen years ago I said, "Yes," to God when He called me into the service of parents raising children just like my own son.  I wanted to be served.  I had deep spiritual needs, but God clearly told me, "The Son of Man did not come to be served, but to serve... You go do it!"  To this day I will maintain that the Lord wanted a dumb, obedient suburban housewife like me, so I wouldn't get in His way.  It has been all of Him as this ministry has grown.  While other colleagues can boast in their credentials, my only boast can be in Jesus Christ, because love of Him is my only real qualification.

Over the past thirteen years, my passion and tenderness for the parents I serve has only grown.  I have seen so many hurts, hard things, and too many children promoted to heaven before their mothers and fathers.  While I have worked relentlessly to cast the vision and tell the story of how much this under-served population needs love, support, and spiritual nourishment, it seems too often that I am tuned out like just another obnoxious noise in the world.  People would rather act like fools dumping buckets of ice over their heads to raise funds for a leviathan organization that misuses it, than they would to part with ten bucks to help put gas in the car of a parent who is endlessly driving to a children's hospital.  Church goers would rather raise obscene amounts of money to send their kid on a short-term mission trip to China for a little hit-and-run evangelism than they would to pay nothing, but have their kid serving in quarterly free respite, making a lasting impact in improving their local community.  My pastor once laughed in shocked agreement when I shared with him the hard truth, that serving parents like us simply isn't as "sexy" as some of the other glammy, rock-star-status ministries out there.

It seems too few care while the need remains too great. 

Here's what you need to hear:  I am a special needs parent too.  When this ministry was founded thirteen years ago, I had a two-year-old with severe hemophilia.  Today, I have a fifteen-year-old who still battles the pain and challenges of hemophilia, but also wages war on anxiety and PTSD from all the medical trauma he has endured.  He's also being bullied in high school by a girl who calls him weak because of his diagnosis.  Talk about having to learn new skills while the male temper rises up under assault by a girl!  In the meantime, he is working on consistently performing an intravenous push of clotting factor on himself every-other day.  His efforts are heroic, but the emotional toll on all of us is exhausting.

While my son continues to face heartbreaking challenges, I am also dealing with the multiple special needs of his younger sister, who began acquiring diagnoses two years after this ministry was established.  Over the years I have spent countless hours and dollars with a pediatric asthma/allergy specialist, otolaryngologist, neuropsychologist, occupational therapist, and other assorted professionals to help manage her smorgasbord of diagnoses.  At thirteen years old, she remains marginalized and does not have one female friend who ever invites her anywhere.  Her differences are particularly stinging when I see her next to her peers of the same age.  While she's cognitively as sharp as a tack, her physical stature and behavior make her appear to be several years younger.  Needless to say, the bullying never ends.

At the same time I am juggling my other two, I remain concerned for my eighteen-year-old, who was diagnosed with a mysterious reactive arthritis three years ago.  No one can quite seem to get at the root of it, despite a mildly elevated ANA level.  So we work on pain management as she pushes through life in college.

All of these things have me fighting my own hurts, my own battles, 504 and IEP meetings aplenty.  My car knows how to drive itself the thirty-five miles to our children's hospital all by itself.  I never stop battling new allergic reactions with my youngest or new PTSD hurdles with my middle child.  Church kids are too engrossed in their own cliques of popularity and status to be kind to my son and daughter.  We have no financial means to take vacations or even fly to see relatives.  Isolation and alienation are my unwanted companions.  Each year I am holding my breath after I complete the twenty-plus pages of paperwork to see if our son qualifies for our state Katie Beckett Program to help pay his gargantuan medical bills.

Meanwhile, I have messages, and phone calls, and requests, and demands from people who also desperately need help.  In my distress, I make every effort at balance, and fail miserably.  My house is a mess.  Meal planning is non-existent.  Bills get paid late.  Laundry gets backed up.  Yesterday, I overlooked my daughter's important appointment for asthma-allergy clinic.  I'm not even sure if I made a much-needed hair appointment for myself before Christmas.  Because so few are willing to step up, I sit and listen, hold hands, pray, write, ship packages.  It's me who is writing the budget, recruiting volunteers, planning, training, meeting, begging for donations, and seeking out grants.  There is never enough -- There is not enough of me to go around.  There are not enough people willing to just sit and be present to other hurting parents.  There are not enough people willing to just follow a study guide and lead a small group.  There are not anywhere near enough donors willing to sacrifice and support so that parents in a hopeless situation can learn about the real hope of Christ.

I know that I am not the only special needs parent leader who goes through this.  Fortunately for some of the others I know, they have a person or two who care enough to take the reins when the leader is at the tipping point.

There are just a few who do step up, and those few are like pure gold.  I wish I could multiply them, because there aren't enough of them to go around either.  They are the ones who give back and do what little they can when they can.  They are the ones who follow through on their promises and commitments.  They are the ones I can count on one hand, who see me when I'm drowning while trying to throw a lifesaver to others.  

I am a special needs parent too.  It was God's will that I serve and not be served.  I can accept and even embrace that.  What I can't embrace is the caregivers I love so desperately, who remain neglected and unserved in Christian community because there simply isn't enough of me to go around.  I cry out to the Lord, praying that more will just simply care.  If everyone just gave a little, oh, how we would reflect His glory!

PRAY:  Father, we all have times where we feel so terribly overwhelmed.  Lifter of our heads, keep our eyes fixed on You during these discouraging times.  Convict hearts so that more will care, serve, and give.  Restore our hope in times of hopelessness.

3 comments:

  1. So very, very timely...so very, very true...these are so often the thoughts and feelings that run through me. <3

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  2. I agree. Glad I am not alone. Your situation is very similar to mine. Your transparency gives me hope. I pray that God will hear your cry and meet the needs of the ministry and your family. I pray for your restoration. Hugs and blessings for all that you do. You are an angel. Thanks for being a light in my dark place.

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  3. Thanks for your comments, Tammie & Denie! Grateful God gives us the gift of one another.

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