Sacrificing for a sibling with special needs.

It’s that time of the year again when my kids come and tell me all the awesome plans their friends have for Spring Break.  Trips to Hawaii.  Time spent at out of state theme parks.  Renting  cabins in the Mountains of Sundance.

Our family?  Well, we stick close to home.  Reed has a couple of days to do a few things around the house.  I try to get a few things cleaned and organized.  My kids rent dollar movies and, if they are lucky, might get lunch from Wendy’s as a highlight of the week off of school.

It’s not that my kids wouldn’t love to be doing fun and exciting things.  No, it’s that they understand what it means to make sacrifices for a special needs sibling.

Today the Blue Eyed Girl and I went and wandered Hobby Lobby before we went to pick up Parker’s meds.  Kenny loves crafting and so spending time day dreaming within the walls of Hob Lob is something she enjoys doing.

Kensley picked up a container of of multi-colored glitter paint and started talking about how many things she would love to paint with it’s psychedelic goodness.  I mentioned how much fun it would be for Parker to paint with her as well.  My beautiful Blue Eyed Girl quietly replied that while she likes to paint with Parker, it is really hard to paint with Parker.

Parker Hodson

She was trying to gently refer to the stage Parker is in right now.   A stage that can best be described as Adventurous. 

  • A stage where communication is an obstacle, so he uses other methods to get his point across. 
  • A stage where Parker is easily bored, but he’s not at a point where playing on his own is an option.
  • A stage where trying to figure out how to meet Parker’s curiosity and need for emotional growth is a challenge with the tools at hand.
  •   A stage where this Hero of ours knows there is a world outside of this house and he wants to be a part of it.

As we continued to window shop, I noticed that as we stopped at items I know my girl was quietly craving, instead of allowing herself to dream, her first response was, “Don’t worry Mom.  I know how hard it is with money and Parker.

Two sisters

This amazing 14 year old of mine understands what it means to make sacrifices for a sibling with special needs, even when those sacrifices are hard.

All of my kids have sacrificed for Parker.  They’ve worked high school  jobs while friends welded  credit cards paid for by parents.  They’ve worked to cobble together creative dates that don’t require much money……or fuel for their cars.  There are no vacations.  Holidays are modest.  Most of college is on their own dime. They often come home to a Mom and Dad too tired and stressed to do much more than simply remember to breathe.

All to help make sure their little brother has what he needs.

A little boy with Down syndrome in the hospital.

I worry that my kids will leave home with a bit of resentment in their hearts toward the  fact that Parker, by necessity, often requires more time than the rest of them combined.

I worry they will feel resentment that I wasn’t able to consign my fear to a place where it wasn’t often so easy for it to overshadow every move I make.

As an only child, I don’t know what it is like to even have a sibling, much less a sibling with special needs.

My heart felt a bit burdened as we walked the craft store.  How do I make sure that this beautiful girl of mine, the one who gave up her place as the family ‘baby’ for Parker’s arrival, that I love her with every fiber of my being.

Right then, the every morning ritual of  Parker racing out of his bedroom  into the open arms of his Blue Eyed sister played in my memory.  It’s a tradition that starts both of their days on the right foot.  Parker bypasses me, straight into the arms of a sister who adores him.

I shook my head and smiled as I remembered how this littlest Hodson boy walks up to his oldest brother and by simply lifting his arms gets tossed into the air in a way that reflects the true Brave Hero this kid really is.

I remembered the humility I experienced when  my married daughter and son in law making a deposit into Parker’s medical fund, knowing how much we still pay out of pocket for things Parker needs and how we worry about how we are going to meet those needs.

I was  filled with pride as I thought of all the times my Curly Girly goes toe to toe with anyone who would use the r-word to demean themselves and others.  I’m excited how this same daughter embarks on the journey of becoming a Special Ed teacher.  I understand the road she is taking and recognize how challenging it will be.

Parker and his brother Rigel

I felt my heart sing remembering how my 17 year old grabs his little brother and heads downstairs to hang out with all of his  high school buddies.  Rigel thinks the world of Parker and constantly reminds me and Reed that when we croak, Parker is going to live with him.

Then it came to my mind….  you truly love those whom you serve.  My children have all served their little brother with the best of what they’ve had to give.

  As I’ve thought about this experience today, it’s been in my heart that perhaps you love those you sacrifice for even more.

 

 

 

 

5 Comments

  1. 'Becca Apr 2, 13
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