What it’s Really Like: Life with Special Needs

I often have friends tell me that they could never do what I do with Parker.  They tell me that they can’t even imagine what life with a kid like Parker would be like.

So I thought I’d try to describe it:

It’s the joy of watching your child ride a tricycle for the very first time, even if you’ve had to velcro his feet to the pedals.  It’s seeing the thrill of a bit of freedom in his eyes and wishing you had the means to offer him so much more.

It’s the heartache of a neighbor kid willing to play with Parker until another neighborhood kid comes along and then they both ditch your kid as they yell, “We don’t want to play with HIM, he’s a baby!”

 

It’s watching your older kids come home and first thing after washing their hands, go in search of Parker.

It’s trying to explain to someone that it isn’t the Down syndrome that keeps you from bringing your kid to church, it’s all the times that he has gotten sick and been brought back from the brink of death that keeps you from taking him to one of the most germ infested environments known to man.

It’s not about having enough faith.  It’s about being smart enough to listen to the doctors who tell you, “Don’t take your kid to church.  He could pick up a bug that could kill him.”

Maybe, you want to suggest, we could test YOUR faith as we stick YOUR kid in the middle of the freeway and pray that she doesn’t get hit.  Both situations are taking really dumb chances with our kids’ lives.

But, of course, you don’t say that.  Instead you plaster the fake smile on your face and wish them a great day.  With their healthy kid.  That’s never even had to have their tonsils out.

It’s the blessing of seeing prayers for your child answered.

It’s the first time your child signs “Mom”, and your heart melts.

It’s your neighbor running over a soda when you haven’t been able to leave the house for days.

It’s finally being able to get that shower you’ve been dreaming of.

It’s worrying over all the things you can’t afford while still working to be grateful for all that you’ve been given.

 

 

It’s the fear that the reason Parker doesn’t want to walk up the stairs and slide down is because his Pulmonary Hypertension is getting worse.

 

It’s watching the tears fall down your 21 year old daughter’s face after advocating for her little brother and the use of the ‘r-word’,  she shares with you an email from a life long friend berating her for ‘forcing this kind of stuff down people’s throats.’

It’s explaining to your 21 year old daughter that one of the blessings of having a child with special needs in your life is that you truly get to know who your REAL friends are.  And sometimes those life long friends?, the one who you worked your butt off for as their Maid of Honor, really are NOT the TRUE friends.

Sometimes it takes a little brother with Down syndrome to lift the fog from your eyes and allow you to walk away knowing that letting go of negative people doesn’t mean you hate them, it just means that you love yourself…….and your little brother.

 

 

It’s the happiness that just creeps up on you sometimes, for no reason you can pinpoint, but lifts your spirits and inspires you to try again tomorrow.

It’s knowing that if two of your kids have events at the same time, one of them will not have a parent to support them at their event.  It’s praying the one who’s turn it is to be without a parent knows how much they are loved and cherished.

 

It’s not having enough faith in the day’s scheduled day nurse to get all of Parker’s meds in him and not leave him alone on the floor to stim while you are gone, so you cancel your mammogram appointment.  Again.

It’s the thrill of watching your child play with a toy appropriately…..all by himself, knowing all the repetition and work was worth it.

 

 

It’s receiving notice that the electricity in your area will be out for a chunk of the day and panicking……not because you can’t handle this situation, but suddenly realizing you are not equipped to keep your kid breathing in a emergency that lasted more than a short span.  And you can’t afford to do anything about it.

 

 

It’s walking into Parker’s room and feeling the sweet relief of his heart rate being in a good place.  It’s also walking into Parker’s room and feeling the nagging worry and fear of his heart rate not being in  a good place.

It’s having another opportunity to employ your faith in the belief that all will work out for the best in the end.

It’s being able to lean on the faith of others when your faith has temporarily exhausted itself.

It’s the miracle of teaching a non-verbal child how to read, something you didn’t even know was possible.

It’s fighting for your kid’s right to be treated like any other kid.  To be shown the same respect anyone else would want to be shown.

It’s the feeling of gratitude that you have the skills to teach your child at home, and that you have the CHOICE of being able to do exactly that.

It’s agonizing over the Waiver you child needs to stay alive while others tell you that you can’t be a member in good standing of your Church if you accept any government help.

It’s the Young Women in your Ward coming over with a hand tied quilt for Parker, a labor of love for a kid most of them have never been able to meet.

It’s knowing you have friends, a support system filled with love, who believe in you, who believe in Parker, and believe that you really can do this.

It’s striving to be able one day to stand in the presence of your Father in Heaven and honestly be able to say that you did the best you knew how for this most amazing of spirits He entrusted to your care.

This is just what it’s like for me.  What is it like for you?