Rediscovering the Joy in the Journey

Sometimes it’s hard.

When the world has raged such a war against children with Down syndrome – When politicians and judges admit that their goal is to eliminate the Down syndrome population – When the abortion rate for a prenatal diagnosis of Down syndrome is 90% or more; – I have to show this world how beautiful my son is, what a joy he is to my family, and how much he is loved and adored.

It’s easy to celebrate each small milestone, to rejoice over every small accomplishment, and to cherish each sweet snuggle.

But, my son has Down syndrome, and sometimes it’s hard.

Is it o.k. to admit that?

…If I do, will someone reading this think his life is not worth living? – or worse, that the child they are carrying is not worth having?  However, I would argue that each child, no matter how many chromosomes they have, has their own unique challenges, and that all good parents sometimes collapse on the couch at the end of the day and say, “This is hard!”

Usually, when things get difficult, I just don’t say anything.

(… Have you noticed how quiet this blog has been recently?)

A few weeks ago, things had been especially hard.  Matthew has gotten to a point where he has so much to say, but his verbal skills are not there yet.  And, the sign language we know is no longer adequate for him to express himself.  The result is frustration – for all of us.

Additionally, he hadn’t been sleeping well after our transition to bunk-beds, even though he loves being in the same room as his brothers.  I admit that the lack of sleep affects us all.

Then, for one full week, he decided to stop obeying.  Completely.  Matthew was testing us on every boundary, it seemed, and making us question every aspect of our parenting.  This kid has made us second-guess ourselves more than any other.  Were we expecting too much?  not enough? How much of what we asked of him was he truly understanding?  (By the way, he understands way more than we give him credit for.)

I was feeling more discouraged than I can ever remember feeling when I was blessed to have a wonderful visit with Libby, who understands these struggles in a way that few others can.  Libby is a mother with so much grace, whom I truly admire.  She is on a journey very similar to my own, and knows the unique challenges I face on a daily basis.  She knows that these frustrations in no way detract from the love I have for my son, or the value that he adds to our family.  With her, I can say just a few words – no lengthy explanations or justifications needed – and she gets it.  When God brought us together years ago, He knew we’d need each other!

She was also able to gently suggest that Matthew’s unusual behaviors (and possibly my ability to deal with them?) may have something to do with our brand-new baby, the fact that I had to recover from a c-section, which meant I could not pick up or hold Matthew for several weeks, and our house and routines have been quite disrupted … Hmmm…  She might be onto something there.

She’s just too cute! Matthew doesn’t understand why he can’t hold her every minute.

I returned home with a refreshed spirit.  Finding, once again, that this is not a lonely road – I have a friend traveling right along beside me.  It’s amazing how much courage that gives me to stay the course.

The very next week, Matthew returned to his usual, agreeable self.  And, as if he knew how much we needed it, he had a burst of new words and phrases, as well as several other words becoming more clear.  Each one caught me delightfully off-guard:

  • -“Whatcha doin’, Jesse?
  • SingingHoly, Holy, Holy” at Mass!  And, when I said, “Good job singing, Matthew,” he replied “Thank you!”  Wow – an unprompted, appropriate conversational response!
  • -“No Way!” (not that we really needed that phrase…)
  • -“No thank you.
  • -“Oh, my goodness!”
  • -“May I be excused?
  • -“Nice to see you!
  • -“Night-Night, Mommy.
  • -Verbally initiating play: “Micah, wait!
  • -And, I even caught him in the playroom singing the Dinosaurs A-Z song by himself: “A: za-za-za-saurus, B: za-za-za-saurus, C: za-za-za-saurus!

He’s back.  My boy who lives each moment with joy, who delights us with his smile, and who continues to surprise us.

Once again, when I am discouraged, when the self-doubt creeps in, God brings in a the gift of a good friend and an extra-helping of grace.  I am reminded that Matthew is exactly the boy God created him to be.  He gives me everything I need, and I pray that I can be the mother He created me to be.

To God be the Glory, now and forever.

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3 thoughts on “Rediscovering the Joy in the Journey

  1. You are such an inspiration to me, even from so far away. You’re right, all kids have their challenges, and no one had better think for a minute we love them any less because of it. No matter how difficult, their cute, genuine, funny ways make up for it, and more.

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