special needs parenting

The Bouncing King.

When I put my four year old to bed every night we read a book and say our prayers and it is a time I truly cherish.  I look forward to this time of day because it’s fascinating to relive the day through a little kid’s eyes and even on the most stressful days I find he always reiterates the good things that I’ve overlooked.

On a good night, we snuggle, talk about our day, read a book or two, and then say our prays before I tuck him in for the night.  Lately, due to illness and activities, it’s been the shortest book in his room, a quick prayer, and a kiss before it’s lights out.  Last night was one of those nights.

The book I picked was called The Bouncing King and I’ve read it dozens of times but never really paid attention to it.  However, when I was reading I stopped in my tracks and found that this silly little story oddly, and profoundly, struck a cord with me.

The story is about a happy, jovial king who loved to bounce at the simplest things.  Bees buzzing and lambs skipping, to be specific.  The people loved him in the kingdom.  There is also a prime minister who writes VERY IMPORTANT LAWS.  (That part is capitalized in the book).  For some reason, only gremlins could stop the king from bouncing and they live in the castle attic.

One day, the king bounces so high he goes through the ceiling and falls to the ground with a gremlin on his back, landing on the prime minister.  The gremlin whispers in his ear that he is not a king because he is not sensible and wise because of his childish bouncing.  The king is sad and wears heavy boots so he will no longer bounce so he could be a sensible king.  He makes a law that no one in the kingdom is allowed to bounce and everyone is dark and gloomy.

The prime minister is puzzled because he cannot see or hear this gremlin but he reads about them and understands why the king made his new law.  He takes matters into his hands and grabs the king and takes off his heavy boots.  The prime minister takes the king on a walk and the king feels lighter without the weight of his heavy boots.  The kingdom is happy to see him smiling again and the king sees the flowers growing, bees buzzing, and lambs skipping again.  The king feels a “spring in his step” and bounces higher than he’s ever bounced before and the gremlin falls off of his shoulder and the lambs squash him flat.

The story ends with the king bouncing everywhere again and he changed his VERY IMPORTANT LAW and now, every week, the people must go and watch the lambs to remind them to keep bouncing and be happy.

I got to thinking about the gremlins in my life that seems to sit on my shoulder.  You can read about some of them here, and while some of them have resolved, they have a tendency to pop up when I’m “bouncing”.

Lissencephaly has changed my perspective on a lot of things.  On one hand, I have new eyes for the simple pleasures in life.  I appreciate the good times a lot more than I used to and, as Andrew and I have said before, it’s brought our family a lot closer and we love a lot harder.  On the other, it’s exposed me to what CAN happen.  With the good, there’s always a look over the shoulder to see if the CAN happens WILL happen.  Is the good that is around me going to come crashing down in devastation again?  That, is my biggest gremlin.  The cause for me to put on my heavy boots and see things that might be darker than they really are.

Thankfully, I have a lot of prime ministers in my life taking my boots off for me and lambs to remind me to be happy.

I have my Will during our time to unwind to remind me of all of the little-big things that passed me by.  He helps me truly appreciate things from a child’s perspective.  One that doesn’t know or fear what’s ahead.  He lives in the moment and he reminds me every day to do the  same.

I have my good husband, Andrew, who is so patient with me and is there to talk about the struggles of being a special needs parent.  He is the only other person who knows exactly how it feels every day.  While he may not understand everything I go through, he “reads about my gremlins” and is always a calming voice with nothing but love and support.

Paige shows me that we can overcome so much more than is expected of us and she is happy to just be herself.  She makes everyone around her better simply because she’s Paige and that’s really beautiful.

Baby Jay shows me hope and healing every day.  I watch him grow and I’m in awe of the simplest things he does.  I take nothing for granted anymore and he reminds me to give thanks and love.  Babies are good at that!

I’m learning that I don’t have to wear the weight of the past.  I’ve realized I don’t like those heavy boots and I will make a daily decision to leave them in the closet, however, if I ever find I have them on, I have my prime minister and little lambs to help me take them off.  I’ll bounce to that!



It’s been a while! Navigating my way through parenting.

I haven’t updated in close to a month and that’s really far too long.  Quite a bit has happened and we’ve had some new and exciting beginnings!

First, on August 30th our Will turned THREE!  It’s taking me a while to actually believe he is now a preschooler but he is and he couldn’t be more excited about it.  Having a late August birthday makes starting activities and school a little trickier because he will either be one of the very youngest or one of the very oldest.  After weighing the pros and cons of both we decided to place him in the 2-3 year preschool program at a little church down the street.  It is a one day a week class and Will absolutely loves it!  He’s in a classroom with 3 of his friends and he is one of the oldest in the class.  A regular morning (which is 2.5 hours) consists of play time, story time, guided areas, songs, and snack time.  When school is over, the parents meet the kids at the door and I’m always greeted with a smiling Will who proudly hands me his “to-go” folder with art.  When we go home the art is promptly tacked up on our sliding door for all to see.  He’s officially a big kid now!

His next big activity is a gymnastics class.  Will is one of the youngest kids in this class but he loves it!  The class is great because they work with what three year olds love like running, jumping, dancing, somersaulting, and more.  It’s also a pretty structured class and the teacher is sure to keep them on task.  There are a lot of multiple directives, stations, and steps that help the kids focus while playing at the same time.  I’m pretty impressed with the program but more impressed with the teachers that can wrangle a group of small children for close to a whole hour!

My goals for Will in preschool and gymnastics are to learn to play in groups, take direction from adults other than Andrew or I, and learn and grow in his own way AWAY from me.  Most importantly though, I want him to have fun!  If I were being honest, and I am, I have to say that I’ve had a little bit of a hard time letting go of the reigns.  He’s only really ever been with me during the day.  I was the one to be responsible for his schedule and social life and now I’m not the one to do it all of the time.  It’s a hard thing to just hand your kid over to someone you don’t know and not know what’s going on.  I often wonder if he’s behaving himself?  Do his teachers see what a great kid he is like I do?  Am I missing any developmental red flags that they’ll blindside me with?  Is he on track?  Am I being overbearing? Is he having FUN?!

It’s funny, if I was not a parent of a profoundly disabled child, I’m not sure so many anxieties would run through my mind.  With Paige, we knew something was off in her early months but the actual diagnosis felt like we were hit by a bus that we didn’t see coming.  I guess a lot of my fears with Will going to school and the vulnerabilities of other people “analyzing” my child kick my senses into overdrive and I fear the worst.  A fear that I’m going to be told something is wrong with my typical child.  I honestly never thought about how Paige’s Lissencephaly diagnosis might affect how I parent my other child and I’m learning that parenting the two have to be completely different.  Because THEY are completely different.

Someone put to me like this.  As a mother, I have a toolbox I use for my children.  When Paige was developmentally delayed and we tried to reach for answers, I had to use a hammer to get them.  My hammer was nagging doctors, doing personal research, and basically demanding an answer as to why Paige wasn’t acting like a typical baby her age.  We KNEW something was off and we pounded away and got validation in the form of her diagnosis.  I had to use the hammer because she needed me to advocate for her in that way.  In Will’s case, I’m having trouble putting my hammer away.  If I get a school report that he’s not playing with other kids or not sticking to a play area the designated time, my emotions go to CODE RED!  If he doesn’t follow the exact procedure or goes astray, I feel the need to bring out my hammer again.  In my head, I go back to the way I felt with Paige.  I think because something doesn’t go completely “on course” something must be wrong.  In my head, if Will doesn’t do something he’s supposed to, there must be a reason for it and I want validation.

The only difference is… Will doesn’t need me to advocate for him the way Paige needs me to.  What he is doing is perfectly normal for a child his age to do.  He’s developmentally appropriate for a typical three year old and, bottom line, he doesn’t need me to use the hammer.  He needs me in a different way.  He needs me to not expect perfection because nobody is and I’m far from it, myself.  He needs me to trust that his father and I have prepared him for a setting that doesn’t include us.  He needs me to trust that he’ll be fine! Mostly, he needs me to be his support and biggest darn cheerleader in the world.  I know my kid.  I know he’s fun-loving, smart, active, curious, hilarious, affectionate, inquisitive, and an absolute joy.  He’s got the best qualities and I have to let go of my fears that the other shoe is going to drop.  For the past year, we’ve gotten used to and accepted that Paige is on her own path and unlike any other’s.  What I’m now finding is that navigating my typical child’s growth isn’t in the same world.  BUT.. I’m getting there!

I wonder if any other family has felt this way?

In other news, Paige is showing growing leaps and bounds in her own development! She is putting more pressure on her legs, playing with toys in both hands, and even starting to feed herself with a spoon! She’s continually happy and is the most easygoing kid. She’s incredible!