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!



Anxietyville, Population:1


This probably won’t be my most fun post and I’m really on the fence about posting it but I feel like it’s something a lot of people, especially special needs parents, go through and it might help someone else or help me find some solidarity in the situation.

For the past year, I have been struggling with anxiety/PTSD and I’m currently having a bit of a bad week with it.

Little back story.  I remember when Paige was around 2 months old one of the first inclinations something was off was her vision.  She wasn’t tracking objects and not really all that smiley.  Physically, she was too young to worry about any milestones but the vision stuck out and we were referred to a pediatric opthamolotogist.  The eye evaluation turned into an MRI which turned into a Lissencephaly diagnosis.  The feeling of being utterly blindsided is forever burned into my memory and took a major toll on my mental health.  Luckily and thankfully, I knew myself enough to know that such a huge change in my life would require a little extra help.  I found a counselor that specializes in navigating grief and loss and it didn’t take long until we started tackling how to process the pain of being a new special needs parent and all the ins and out of what that entails.  What I didn’t expect was just how many layers and ugly heads grief and trauma can have.  The hardest and ugliest, so far, has been the post traumatic stress that erupted about a 9 months after I first heard the word Lissencephaly.

I remember taking Will to his first gymnastics class last year and it was his very first activity that didn’t involve me being right there with him.  He was a new 3 year old with a ton of energy and absolutely loved the class.  For some reason, I was a nervous wreck about it and completely analyzing his behavior in the class.  I counted the number of times he needed to be redirected, made sure he was following directions, and didn’t take my eyes off of him for a second.  I knew my behavior was a little quirky but I chalked it up to not having control of the situation.  Then, that threw me off because never in my life have I been a control freak.  I knew something was different but couldn’t really pin down what it was.  I just knew I was anxious and couldn’t stop it.  He started preschool shortly after and it was another activity where he wasn’t in my care, but unlike gymnastics, I couldn’t be there with him to peep in.  Talk about stressful for me!

My anxiety continued monitoring and tracking Will’s development.  Almost everything he did I analyzed.  Thoughts of how Paige didn’t meet milestones before her diagnosis flooded back to me.  Thoughts of how I would run to her pediatrician and pour all of my observations out to them only to be told it was too early to worry.  I KNEW something was wrong with Paige very early but I didn’t know what.  And even though I knew something was up never in a million years did I think it was as severe as it turned out to be.  I always remembered this feeling when Will did something like get out of line, miss a turn, or needed to be redirected, I thought it meant something.  If he recited a movie line or walked on his tip toes, I ran and did an online evaluation for Autism.  I had that same gut feeling about Paige before but now I had it with Will.  I just KNEW something was going to be wrong, or off, or diagnosable.  Frankly, it turned into a debilitating fear that recent history was quickly repeating and my anxiety spiraled.  To cope, I bugged Andrew, my mom, and others incessantly over whether or not I thought Will was okay.  I would ask his teachers about how he was doing and if I heard something that wasn’t absolute perfection I’d freak out.  Even if all of those people told me a million times he was perfectly fine and thriving I just didn’t believe it.  Something incredibly rare happened once it could happen again, right?!

After lots of analyzing myself and help from lots of people, my grief counselor suggested I have PTSD from the diagnosis and the trauma was causing me to take out my fears elsewhere, in my case.. Will.

As a person, I felt relieved it was more than anxiety but as a mother, I felt absolutely terrible.  Here i have these two beautiful children.  One who is able to do many things and one who can’t do anything.  It’s like parenting on two different planets.  I felt like a monster but my grief counselor helped me realize that due to the trauma and stress, my instincts were not reliable at the moment because I was always going back to the worst day of my life.  She and Andrew both have described it like a veteran returning from war and hitting the deck when they see or hear a firework going off.  A typical person would see beauty in the sky but to the veteran it takes them back to a place of fear and fighting.  That’s how I felt when I was analyzing Will.  A typical person would see a child learning and growing joyfully.  Some areas faster than others but on a good and healthy track.  I saw future fear and panic of someone telling me he wasn’t doing things age appropriate and needed an evaluation, no matter what the activity was.

At that time, I was unable to look past the trauma and i was fearing fear!  I got a prescription of Zoloft and it helped tremendously.  I saw the fog lift and my rational thoughts were slowly coming back.  When an anxious thought came in my head I was able to talk myself off the ledge and realize it wasn’t me but the trauma that was making me feel that way.

One thing I promised myself was that I wouldn’t let fear dictate my life.  Andrew and I always wanted a big family and I wasn’t going to let my fear get in the way of that.  With the help from my doctors, I successfully weaned off my SSRI and was confident in my coping skills to get me through an unmedicated pregnancy.  I actually have been pretty good this pregnancy and have been staying positive.  Sure, I’ve had super anxious moments about the baby boy coming in January, but we’ve gotten good reports so far.

Now, when I reread what I’ve written it looks like my life was completely dire but, the funny thing was, it wasn’t.  I was/am cognizant enough to not let Will pick up on my insecurities.  Sure, I bother the hell out of Andrew and my mother, but I’m still able to enjoy life and have special moments with Will and Paige.  Even when I look back at that point in my life last year when I was really struggling, I remember the best things about Will and Paige.  That’s the funny thing about anxiety.  It’s not always there but it has the potential to always be there.

Unfortunately, this past week I’ve been thrown into Anxietyville, Population:1, again.  I’ve been dealing with a lot of the same insecurities.  Will had a speech evaluation that everyone gets at his preschool and it spiraled me back to the eye exam that led to so much more.  I fear this evaluation means a bigger diagnosis and his future will be riddled with therapy like Paige’s is.  Again, I’m fearing fear!  This time, I know that it’s not me and I can’t really trust my instincts at this time and I have to rely on those who are more rational around me.  And I know, whatever happens we are perfectly able to handle and deal with it.  And also, Will is the coolest kid ever and he’ll be just fine!

Frankly, it’s a sucky feeling to not be in control of your emotions and rampant thoughts.  I’m learning grief, trauma, and its recovery isn’t a straight line and I’m constantly picking myself back up.  I hope it evolves into a more natural place, but until then, it’s a struggle.  Currently, I’m able to rationalize but the anxious feeling in my gut just won’t go away and it’s like it’s a constant reminder of my negative thoughts.  Being hormonal and pregnant doesn’t help, either.

Throughout my struggle, I’ve met so many people who are going through a very similar situation and that’s helpful.  Many Liss parents I’ve met throughout our journey are going through with the same thoughts and grief.  Still, people don’t talk about issues like anxiety and PTSD because there is a stigma.  In my case, I don’t want to talk about it because it’s just not a fun conversation.  Also, I don’t want it to be my identifier.  All I know is that at my worst, I desperately wanted to talk to someone who understood how I felt and if this post makes someone feel less alone, than it’s worth it.

I know bad things will happen and I’ll get hard news at some other point in my life, but I know that the wave will pass and I’ll also get GOOD news and GOOD things will happen too.

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!