Friday, June 6, 2014

When They're 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, 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.

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 Dittrich

*Snappin' Ministries offers a mentor program for mutual support along the journey.  Check out our website for more information, and contact us if you have additional interest.

16 comments:

  1. Barb, Thank you for so beautifully writing what my heart has been feeling. Hugs to you as you continue on your journey!

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    1. Bless your heart, Pam. Take heart in knowing that you're not the only one.

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  2. So true Barb. One thing though--your kiddos may not be little but they are still cute:)

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  3. Ha, Deb! Don't tell them, but I happen to think they're pretty cute too. Some days that's the only thing that keeps me from eating my young like a gerbil! :-D

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  4. gerbils eat their young?! bonus knowledge ;) in addition to this very REAL post. you had me at the title :o thanks Barb!

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    1. Glad I could add extra value to your reading, Diane! ;-)

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  5. Excellent post, Barb. Thank you.

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    1. You're welcome, Anjie. I'm just the pencil. God does the writing.

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  6. How about remembering to invite our kids to birthday parties? I know my 14 yr old has been invited to less than 5 in her entire life. I have given up friendships over it.

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    1. GREAT point! I don't think people realize that our hearts, as parents of these precious kids, get broken over and over again.

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  7. Thanks Barb! My two autistic "children" are now 23, and 26! This post was right on, and I hope many who read it will reach out to those around them and see this as a real place of necessary ministry! :-)

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    1. So glad you found this to be edifying. Help us keep spreading the word!

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  8. Oh, how to say these words in such a way so as to let you know that they are spoken with love and kindess, and not to take away hope, and yet to show the reality of what lies ahead...the school world is a contrived world where parents and students have all the rights of entitlement. The no bullying programs, circle of friends, inclusion, etc are wonderful but they are not reality. When you think of the true friendships that you formed in school, even in college, they were typically with people like yourself. In my 30 years as a special education teacher, and my 55 years as a sister to a person with a significant cognitive disability, what I have seen as the hardest part of acceptance of the person with a disability is the acceptance of their disability as part of them. What I mean by that is parents don't want their child in special Olympics with those other special ed kids, for example, because they want them in the school's athletic program with the "regular kids". But those kids graduate and go to college and never look back. Then two years later the kid tries it out and loves it, makes tons of local friends with people just like himself and wishes he had done it all along because he never really felt he fit in.
    I know it is heartbreaking to see your child excluded but it happens ALL THE TIME in high school, not just to kids with disabilities. The key is NOT to give up friendships, be angry and EXPECT everyone else to care for your child. The key is to find the people, programs and friendships that understand and accept you, your family and your family member as they are. The world is a cruel place, and as a parent in general your heart will break any time you see your child suffering. But don't expect the world to realize your hurt or you will be a victim forever. Find a place (real and spiritual) that you can help your child live his/her life in their way on your terms. In our house when my kids were growing up, they knew, and told their friends, that retarded was a bad word. Just the other day, when I was subbing in a local junior high school with a class of particularly "behaviorally challenged" students one of them used the R word. I didn't hear where it came from, and so I gave them my spiel about that word being a bad word and told them about my sister. It was the only time all day that they were all quiet and listened. At the end, the biggest troublemaker of the group turned beet red and apologized! Sorry to ramble so much, but I guess my point is don't take it personally. Live in your reality, find the support of others like you, and have some comfort in knowing that pobody is nerfect. We all have days when eating our young looks like a viable option!

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    1. Thank you so much for your unique perspective of both adult sibling and special educator. I truly appreciate you sharing your wisdom. I hope you were able to grasp the key takeaway from this message as, "People's eyes should to be open to the need for TLC no matter what phase of parenthood people are at." As Christ's ambassadors, we should be offering support and love to one another no matter what phase of life we are at, not just initial diagnosis. As Rick Warren points out in his PURPOSE DRIVEN LIFE, "We were formed for fellowship". That means we're there for one another over the long haul. I think that's something all of us in the church can aspire to, no matter what our walk.

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