When Our Children with Disabilities Are No Longer Little or Cute

O Lord, how long will you forget me? Forever?
     How long will you look the other way?
How long must I struggle with anguish in my soul,
     with sorrow in my heart every day?
How long will my enemy have the upper hand?
Turn and answer me, O Lord my God!
    Restore the sparkle to my eyes, or I will die.
Don’t let my enemies gloat, saying, “We have defeated him!”
    Don’t let them rejoice at my downfall.
 ~ Psalm 13:1-4, NLT ~

My husband and I were "late bloomers" when it comes to parenthood.  Many of our friends had school-aged or even graduating children by the time I began having babies.  If you have had friends with older kids, you know how they love to tease and warn those who are new to parenting.


"Little kids, little problems.  Big kids, big problems!" our friends would warn us.

 With all of the BIG problems over the years, we learned early on that it wasn't worth our energy to sweat the small stuff.  We were afforded the "honeymoon" of having very few serious difficulties for the first 3 years of parenthood.  Still, once hemophilia came to town as an uninvited guest at our son's birth in 2000, things never slowed down.  

When your child is first diagnosed with a special need or serious chronic illness

When your child is first diagnosed with a special need or serious chronic illness, you experience perhaps the greatest amount of support and kindness you will ever be afforded on the journey.  People show up with offers of meals or willingly give you a break without having to ask.  They mean it when they say, "I'm here if you need anything."  They open up their wallets to donate to causes that assist your child.  And they remember to ask how you and your child are doing when they see you.

But what about later on?

Unfortunately, as time goes on, people begin to experience what I call "compassion fatigue".  It may sound harsh, but they begin to zone out when you share information about your child.  They don't want to hear about it any more.  It's too heavy for them.  They expect you to get on with life, and adjust to your circumstances with a sense of "normalcy", pasting a smile on your face.

Nevertheless, your need as a parent doesn't go away.  That desire for TLC, reassurance, and love from others doesn't dry up just because you have adapted.  The need to talk things out in order to make sense of complex issues doesn't go away.  In fact, with every phase of our children's lives comes a new adjusting to how life will be faced with the added factor of special needs.  Bad school years come.  Medical challenges occur.  New tests, procedures or surgeries are scheduled.  

It is in this long stretch of life as they reach the phase where they are no longer little or cute that we can find ourselves crying out like David did in Psalm 13.  "How long?"  The heavy judgment of others weighs upon us year after year.  The isolation grows.  We fight resentment towards those whose lives are seemingly without trouble.  All we want is what we perceive everyone else as having.

If I could leave people with just 1 message from today's devotion, it would be this:

Please don't forget me just because my children are older! I still need help and support!

There are days where I would kill to have someone still offer to take my youngest Aspie on an adventure so that I can get something done around the house or nap from the cluster of nights that she robs me of sleep.  To have someone continue to donate to our local hemophilia foundation, so I wouldn't always have to feel guilty about seeking scholarships for camp each summer would be such a gift.  Just to have someone concerned that my 17 year old still has no definitive diagnosis for her joint pain, and grieve with me over all 3—ALL 3—being affected by special needs or chronic illness would bring me comfort.

Yes, the desperate fear of initial diagnosis has waned.  We have overcome many hurdles with the Lord's help.  Still, that doesn't mean that new obstacles, new frightening unknowns don't suddenly appear.  Our hearts need the strengthening that comes through the love and caring of others.

I'm not trying to throw a pity party.  I am so very grateful that my kids are growing into remarkable people, each in their own right, but parenting kids like this is an endurance race.  Too many days I don't have the needed endurance.  I am weary and battle worn.  I still have deep needs.  And so do too many parents like me who have no opportunity to tell you.

PRAY:  El Roi, thank You for being the God who sees when no one else does.  Thank You for also being my Jehovah Jireh, provider of all.  Open the eyes of people around us today, Lord.  Make them aware that we parents still need a break, still need love and support, no matter what our children's ages.

Barb runs Snappin' Ministries, whose purpose is, to continuously support and encourage those living with the challenge of parenting a special needs child, so that the genuine love and hope of Jesus will be experienced and shared in their every day lives.