Love Is: Special Needs Edition

I recently read that in stressful situations, love has the power to heal.  It heals those that receive it as well as those that give it.

In our lives we’ll experience negative situations.   But there are two truths to get us through the rough patches.  1) The world is ruled by a love greater than any negative out there. 2) We’re all in this together.

In the special needs community I watch as parents come together time and time again to offer support, prayers and love to those they’ve never ever met.   Right now a sweet Mama friend of mine is helping her little girl kick cancer’s butt. Another recently lost her fight to keep her child alive.  I find myself, along with countless others,  keeping these families in my prayers several times a day while sending healing, positive vibes to the hearts of these parents.

We are truly all in this together.

For those within the special needs community, love might look a little different than in other communities.  Some of what love is when being a parent of a medically fragile child with special needs includes:

Love Is:  Having no idea which doctors to trust, and then having a friend hook you up with the ones she loves the most for her child who also turn out to the ones who are willing to go above and beyond to keep your child alive as well.

Love Is:  Having your insurance policy suddenly decide to no longer cover your child’s feeding supplies based on the fact that they feel he has the ability to take enough by mouth.  In a bit of a panic, you turn to your community of parents of kids with special needs and in return receive offers of food, tubing, bags, and the knowledge that you are truly not alone.

Love Is:  A husband who sleeps on the floor of your son’s safe room each night we don’t have a nurse. He wants to be there in case your child hooked by his trach to his vent and oxygen supply gets into a situation that could cost him his life with no one close enough to hear the alarms go off.

Love Is:  Your ward hosting a special fast and prayer as your child goes into an important surgery.

Love Is:  Siblings who willingly give up college funds, mission funds and work their way through college instead so that the money once saved for them can go to the one we call our Brave Hero to help meet his need.

little boy riding an AmTryke

Love Is: Having someone donate an adaptive bike to your son so he can experience something beyond the 50 feet of tubing he will forever be tethered to.

Love Is: Neighbors and friends showing up on your front yard while it’s still dark to help set up the most epic yard sale ever in hopes of you raising enough money to provide your child to the intensive physical therapy he needs.

Love Is: Your neighbor calling to see how the scouts can welcome Parker into their pack.

Love Is:  Friendships made as others falter under the pressure of your new normal.  Friends who believe in both you and your medically fragile son.  Women who are still there right beside you as you pass through days so dark you thought you’d never see a dawn.  Women who pray for you and fast for you and add your name to the Temple rolls.  Those who share their talents and experience with you.  Those who bring a Santa and elves to your son when your son can’t get to them.

A little boy with Santa Claus

 

Love Is: The unexpected donation that allows you to purchase new filters for the air purifiers you run 24/7 in your home to help keep your son well, and purchase a few Christmas gifts and stock up on the things that neither private insurance or waivers cover.  It’s the unexpected gift card from an anonymous friend taped to your front door or in your mailbox that ensures you’ll have enough to make it through the month after all.

Love Is: Hearing the doorbell ring and opening the door to find the biggest diet coke over ice you’ve ever seen with a note that simply says you are loved.

special needs

Love Is:   The joy that faith and a positive attitude brings.

Love Is: The magic that allows gratitude turn all that you have into enough.  You are too busy being thankful for this child that has been given to you to be jealous about something as low on the ladder as putting effort into competing with others for who has the most stuff. 

Love Is: Understanding that facing the challenges brings to us opportunities to learn lessons in ways that bring us closer to God.

Love Is:  My father telling me that because of Parker he’s spends more time than ever in earnest prayer for my son, his medical team and for me to have the strength and inspiration to meet the challenges.

Love Is: My mother staying with me for days on end up at Primary Childrens Hospital, sleeping on couches too short, living on grilled cheese sandwiches, hoping your grandchild can hear your voice through the sedation that is keeping him still enough to not pull his newly placed trach out.  It’s also your Mother repeatedly reassuring you that in her heart of hearts she knows your son was meant to be here for a long, long time.

Love Is:  Receiving emails, texts, cards and phone calls telling me how much our family is loved and that we are being prayed for.

Love Is: The light of understanding on a Brave Hero’s face after a zillion repetitions and he gets it.  He really, really, really understands and is as excited as you are.

Love Is: Knowing the love Parker enjoys and my passion for being his Mama outweighs any fears I may experience.

 

Sometimes it’s hard to express to a person how their kindness has touched your heart in a way that you can still feel years later, and bring it forth from that special place in your heart where sweet memories are kept and wrap it around you during the hard times.

Love rules the world.

Share love.  Be kind. Be willing to accept kindness. There is a healing power in connections with one another that I hope to be able to pay forward one day.   The world is truly ruled by love and we are truly all in this together.

What is love to you? 

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Beautifully written! Love ya – Happy New Year!

  2. That is truly beautiful and touching!

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