Wednesday, August 3, 2016

Let's Get Physical

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Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.  
2 Corinthians 4: 16-18 NIV

Being the parent of a child with disabilities is grueling and arduous work and EXTREMELY physical.

During Special Needs Parenting Month, I think this is a pretty important fact to write about, and one which has hit me square in the face within recent days.

Some of our kids are in wheelchairs and require lifting.  
Some of our kids require help bathing and dressing.
Some of our kids require feeding.

While my daughter isn't in a wheelchair, and doesn't require feeding, we still help with dressing from time to time, and in order to ensure safety, we do help in the bathroom often as well.  She's legally blind and has a gait which is shaky, especially in new areas or unpredictable places.

We just happened to be at church summer camp this past weekend, from Thursday through Sunday. 

Was it a camp for children with disabilities?  No.  Was it a camp for children who are blind or visually impaired?  No.  Was it a camp for children with a variety of health conditions or cancer survivors?  No.  It was church camp, with her peers, with whom she attends church.  (That's important to keep in mind and probably a theme you'll see running throughout my posts this month.)  

To make a long story short, our beautiful camp, located in the Sierra Nevada Mountains, left a lot to be desired from a mobility standpoint.  We were in the mountains, by a lake, and that meant there were some unavoidably steep inclines and treacherous rocks around which to navigate.  While my daughter walks with a white cane, and has great skills on stairs and flat surfaces; the rocky, rooted, dusty pathways around camp were incredibly challenging.  Unfortunately, the route down to the lake was one of the worst, so, after one trip down and back to attend chapel with her camp-mates, she wasn't up for another journey to play at the waterfront during free-time.

Honestly, Thursday night, after one night of watching her trip around all the luggage in our cabin which we were sharing with other girls her age, and keeping my iron grip on her left hand while she tried to find all the roots and rocks in her path with her cane in her right hand, I was in tears.  I texted my husband and said, "We'll never make it past tomorrow."

I said, "Do you want to go?  I'm ready to go.  We can build a tent in the house tomorrow and we can sleep in our sleeping bags."  Nope.  She wanted to stay.

Praise the Lord, the adults heading up the trip approached ME and said, "We have an empty cabin.  We can put you in there and you'll have the place to yourself."  

That saved the weekend.  We were able to have our own bathroom so I could assist in the shower when needed, we didn't have a clutter of suitcases and camp-chairs leaning against walls.  Plus, since we couldn't make it down to the water for free time, we were able to play "Beach Ball Volleyball" in our cabin because there was so much space.

Apparently my daughter had a blast because she's already telling people it was her favorite part of the summer and that she's ready to go back next year.

Mommy?  How's mommy feeling?

Well, mommy really messed up her shoulder holding on for four days to her little camper.  I was in pain while I was at camp, working hard on massaging the part of my shoulder that was painful (I've had tendon issues in that shoulder before and see a chiropractor for it.)  I was managing well, but definitely was suffering from the constant work I was doing to keep my daughter on her feet rather than see her literally "bite the dust."

I started to think about the physical tolls of special needs parenting.  It seems that the majority of parents of children with special needs is exhausted.  Many of us can't sleep at night, and many of us even suffer from the PHYSICAL pain which follows the EMOTIONAL pain; like migraines, for example.  And I think we often feel that we suffer without the understanding or empathy of others.

Most parents grow out of feeding their children.
Most parents grow out of picking up their children.
Most parents grow out of worrying about their children being taken advantage of in one way or another because of their naivety and innocence.

But that's not the case for many parents of children with special needs.  And I just wanted to bring that to light today and honor our parents by saying, "I get it.  I understand.  Your pain is real.  God has not forgotten about you."

"And God will wipe away every tear from their eyes; there will be no more death, nor sorrow, nor crying.  There shall be no more pain; for the former things have passed away."
Then He who sat on the throne said, "Behold, I make all things new."  And he said to me, "Write, for these words are true and faithful."  Revelations 21: 4-5 NIV

I love that last part...the emphasis on that those words were TRUE and FAITHFUL.   

Hold fast to those words, dear friends.  Write them in dry erase marker on your bathroom mirror so you can read them every day.  God KNOWS about our pain, and He is writing a story in which we bring HIM glory through the beauty of our pain and sacrifice.

Pray:  Heavenly Father, thank you for not forgetting about us, and for preparing us for a place where there will be no pain, no tears, no suffering.  God, you are good, faithful, and just, and we long to be home with you; but we understand that we are here to do your will on Earth.  Continue to fill us with your presence and strength.  Amen.


  1. It feels so good to know that someone really understands and can empathize with my struggle, purpose and hope. Thank you for the encouragement.

    1. You are SO welcome, Denise! Thank you for YOUR encouragement!