Forced to Slow Down

A week ago, I wrenched my back.  Instead of slowing down and taking it easy then, I kept on going.  

Like I usually do.  

Doing more than I should have.  

Taking care of everyone else.  

Telling myself I'd take care of me later.  

Which turned into never.  

I went from achy to having severe back pain.  Now, all I want to do is be still and wrap myself in a heating pad.  If someone offered me heating pad pants, I guarantee you I'd be wearing them right now.  

Using the heating pad helps relieve some of the ache.  But I can only sit down or lay down with it only for so long before someone needs me.  Or wants my help.  Or asks for my undivided attention.  

I should've listened to my body a week ago.  

It's screaming at me now.  

My back.  

My tail bone. 

And now my hips. 

OUCH.  

And wah!  I want my Mommy :( 

I didn't slow down.  Not many Moms do, I suspect.  I know I better figure out soon how to better care for my back and to also slow down.  I need to do that before something worse happens—before I'm forced to come to a complete stop.  

xo, Cat  

Dreams

I’ve always liked going to the library.  The books.  The shelves.  The little study cubbies that line the walls.  It’s all so peaceful and comforting to me. 

I’ll pop into our library if I’m on that end of town doing errands.  Some days I can only stay a few minutes while other days I can spend an hour or more there.  Some days I have an agenda—return movies, find a book about a particular therapy, get the kids some movies for the weekend.  Other days I’ll go to the library just because I can. 

Each time I go to the library, I check to see if The Thinking Moms’ Revolution’s book, Autism Beyond the Spectrum, is there.  If it’s on the shelf, I may or may not do some minor rearranging.  I’m proud of that book.  My chapter, as well as some other writing contributions, is in that book.  It took a lot of work and coordination with the other 23 writers, but I got a taste of what it took to see a project go from a dream to reality. 

The last two times I saw the TMR book, I made sure it was on the  end of the shelf, displayed with the front cover showing.

The last two times I saw the TMR book, I made sure it was on the 
end of the shelf, displayed with the front cover showing. 

I’ve always wanted to write my own book.  I’ve had that dream since I was in the second grade.  Years ago, before Ronan got sick, I started to turn that life-long dream of mine into a reality and began writing a children’s novel.  I have ten chapters written but haven’t finished it.  Someday I’ll write the last two chapters so I can submit it to a publisher.  

I know that not every dream pans out.  But the one that do become reality?  They inspire others.  They give people hope.  They bring people together.  They remind people to believe.  

For as long as I live, I want to always believe.

xo, Cat

Third Time’s a Charm

We had plans to eat dinner with friends at a local restaurant about two weeks ago.  A night out with friends was just what I needed after having a particular overwhelming day.  All I wanted to do was sit, relax and eat.  Instead of digging in when my meal was ready, I laughed. 

Lifting the top bun of my chicken sandwich to add some ketchup to it, I laughed. 

“Hey, my chicken—it’s in the shape of a heart!” 

Making sure I wasn’t seeing things, I showed the sandwich to my friend.  She smiled and said, “It is a heart!”  I told her that after the day I’d had, I really needed the laugh that that heart-shaped sandwich gave me. 

I wish I’d taken a picture of my sandwich, because two times since that random heart sighting, I’ve seen two other random hearts.  Fortunately I had my camera with me and snapped a picture of them: 

I saw this leaf-shaped heart on a day that I was missing a friend 

who'd recently passed away.

I spied this smooshed piece of paper that looked like a heart in the parking lot soon after Ronan and I left a not-so-smooth therapy appointment.

Like that first random heart I saw in my chicken sandwich, the other two hearts showed up on days that included discouraging moments. 

Seeing those hearts made me pause.

They lifted my spirits. 

And they reminded me that tough moment are temporary.  Things get better.  They may take time to get better (and require a whole bunch of patience), but things eventually do get better.  

xo, Cat

Saturday Night Seizure

Last week I wrote about how tired Ronan was when we woke up Thursday morning.  Waking up tired is not unusual for Ronan.  Mornings are typically tough for him.   When he wakes up more tired than usual though, and also with his Thomas the Tank Engine sleeping bag next to him, I worry.  I also set a mental clock:  48 hours.  Go.

That sleeping bag was given to him by dear neighbors of ours when Ronan was a toddler.  He snuggled with it so much back then that we used it as a comforter for his bed.  Ronan has a new comforter now, but he will still sometimes reach for his sleeping bag.  I always keep it in his bedroom in case he needs it, because when Ronan grabs for his Thomas sleeping bag, it usually means a seizure is on its way.  When I got Ronan up on Thursday last week, the sleeping bag was wrapped around Ronan.  He wouldn’t let go of it when I got him out of bed to change him. 

Tick tock. 

The countdown had begun.

Thursday was tough. But we got through it. 

Ronan was a little scattered on Friday morning and had a few negative behaviors, but he was able to be redirected. 

Friday afternoon was easier, but I still tip toed through the day giving Ronan extra time to do things in case he needed it. 

Ronan became fixated on playing Wii (and nothing but the Wii), but he was looking good.  As the day went on, Ronan hadn’t shown any signs of distress, so we kept our plans to go out with friends on Friday night and grabbed a bite to eat.  I’m glad we kept our plans.  Ronan enjoyed himself and our friends remarked that Ronan looked good.   

Since we got home late, we slept in Saturday morning.  I love alarm-clock free days.  Ronan does too.  He slept for over 12 hours and woke refreshed (and hungry!) Saturday morning.  The best part of this particular sleep-in-late day was that Ronan slept through the final hours of that 48-hour seizure watch. 

Relief!    

Once breakfast was over, we made plans to visit other friends and to explore a new area. 

Saturday was fantastic.  The weather was perfect.  The kids were great.  The drive we took was beautiful.  We got to walk around and do some touristy stuff.  Ronan enjoyed being outside exploring too.  From start to finish, it was such a good day.  I couldn’t have asked for a more perfect family day out. 

When we got home, it was time for the big kids to start their bedtime routine—taking showers, putting pajamas on, brushing teeth and getting Church clothes laid out for the morning.  I knew it would take a few minutes for them to be ready, so Ronan and I went to his bedroom to wait for everyone to join us for nighttime prayers. 

I love this quiet time with Ronan, because he’ll sometimes open up and say things.  As I changed Ronan into his jammies, I talked about the things we saw and did that day.  I asked Ronan to repeat some words I was saying because it sounded like some of the vocalizations he was offering were actually verbalizations.  That night, he came *this* close to saying Mom! 

I quickly turned on the video recorder hoping to capture Ronan speaking again.  But instead of words, I recorded a seizure. 

Sometimes Ronan’s seizures are very quick.  Just as quickly as one starts, it’s over.  But Saturday night, Ronan had another one, and then another one after that.  His seizures continued for the next hour.  I held him.  His sister held him.  His Daddy stayed close by.  We kept track of how long the seizures lasted until they were done.  When they were done, I tucked Ronan in and said good night. 

As we tucked Ronan in, the fun, excitement and enjoyment of my day was completely gone.  How could I find anything remotely happy when my son’s seizures took over his body?  His eyes fluttering and rolling back.  His arms flailing and his torso contorting this way and that.  I have nothing nice to say about seizures.  Seizures suck.  They really, really do. 

How I wish these seizures would stop.  How I wish I understood them better and knew how to stave them off.  We’ve got a 48-hour EEG coming up where Ronan will be hooked up to electrodes that will measure the electrical activity in his brain.  As much as I hate to schedule this invasive procedure, we need to figure out why these seizures are still happening.  Why they’ve increased.  And why medication is not controlling them.  If we can get a grip on the seizures, I imagine some things could be a little bit easier for Ronan.  How I’d love for things to be a whole lot easier for him. 

xo, Cat

Over and Over and Over Again

I wanted you to know I love the way you laugh

I wanna hold you high and steal your pain away…

Broken, from the band Seether

Those are the first two lines of a song I haven’t heard before.  Ronan played that song on his iPad last night.  Some of the Youtube clips that Ronan chooses and frequently goes back to are from shows and movies he watched before he got sick.  I like it when Ronan rediscovers those memories.  It reminds me of a time when he was healthy, active and on track with his development.  But every now and then, we’ll hear Ronan play something on Youtube that he’s never played before.  Sometimes they are songs I’ve never heard before either, like last night, Ronan played Broken. 

Remember yesterday when I wrote that Ronan had gone back to an old habit?  He loves his old habit.  He plays clips of favorite lines of his favorite movies over and over and over again.   I find that when Ronan gets “stuck”, he’ll plays those movie clips over and over and over again.

That old habit of Ronan’s tends to be a bothersome habit because not only is Ronan hearing the line of a movie over and over and over and over again, but so am I.  They are his favorite lines; not mine.  But Ronan tends to pick up that old habit of his to soothe himself.  He used to not know how to soothe himself and would tantrum instead.  Having the ability to self-regulate and to cope are important skills for all of us to have.  Ronan’s coping skills are emerging, and as I reflect on some of the struggles Ronan had yesterday, no wonder he spent so much time stimming on his Youtube videos at the end of the day.  It was a tough day for him. 

Ronan woke up yesterday very tired.  He fought me at wake up.  He also fought his sister as she tried to help too.  Ronan did everything to not cooperate with us.  He eased into the day with his dukes up.  He also showed some behaviors that typically warn us that a seizure is coming.  Ronan was incredibly slow during the day.  He needed more physical assistance moving in and out of the car, up and down the stairs, to and from the dining table.  He pushed on his eyes and gently stroked his hair—two signs we know are precursors to seizures.  When we were all home at the end of the day, and as Ronan got more tired, I asked the kids to be on seizure watch. 

When Ronan was done with dinner, he found his iPad and went back to playing his favorite clips.  But, in between watching his favorite movie clip, he found that Seether song.  I didn’t think anything of it at first.  Until he played it again.  And then one more time after that. 

‘Cause I’m broken when I’m open

And I don’t feel like I am strong enough…

Those lyrics. 

Those emotions. 

Wow.  

And woah.

Those lyrics fit right in with how some of Ronan’s day play out.  He was weaker than usual.  He was exhausted.  He was worn out.  I wondered if that song wasn’t so random after all. 

At the end of a tiring day where it took Ronan much more effort to just get through the day, that song and some of those lyrics, spoke to me.  Ronan is technically non-verbal.  Yes, he can sign, write and say some words, but he is not yet able to have conversations.  Deciphering what he is going through and what he is feeling can be difficult.  But Ronan is trying to communicate.  He is trying so hard to find the right words.  He is communicating with me.  Over and over and over again.  I promise to be right here always ready to listen.

xo, Cat

Listen to the song Broken.

Out the Window

Trains would go through our town a few times each day.  You couldn’t miss them or the excitement they brought.  If we were going through town at the right time, my kids would get so excited to see a train.  All of the kids except Ronan. 

As we heard a train approach, Ronan's siblings would plant their faces on the window waiting in excitement.  They listened to the sound of the crossing bars as they went down.  They covered their ears anticipating the train’s whistle blowing.  They squealed when they saw the train as it chug chugged down the train track.  

From start to finish, it was all very exciting.  It was also very loud.  But Ronan showed no interest.  He ignored everything about the train.  With each passing train that Ronan ignored, my hope that he’d respond like his typical siblings responded went right out the window. 

Ronan ignored trains until around the age of four.  I remember the day he finally took notice.  I was so excited!  The first indicator that Ronan knew something different was happening was when he heard the ding, ding, dinging of the railroad crossing arm as it lowered.  Ronan glanced in the direction of where the sound was coming.  He looked for it and then stayed interested in it.  While staring toward the tracks, the very loud train that Ronan always ignored approached.  Ronan remained interested and cocked his head to the side.  I couldn’t believe what I was seeing.  Ronan stared out the window and watched the entire train go by!

That incident happened soon after we’d just started some chiropractic adjustments with Ronan.  As with many new things, it took a while for Ronan to get comfortable with a new treatment.  He didn’t love them at first but would eventually climb on the table and wait to be adjusted.  I always liked that part of our visits because it seemed like Ronan knew that something about the treatment was going to help.

Help him they did.  Chiropractic adjustments made Ronan's body sort of wake up.  He wasn’t as sensory defensive.  He wasn’t toe walking as much.  He was less anxious and more relaxed.  He heard things a bit faster which meant he responded to things faster too. 

Ronan came out of his shell a little bit as he started to notice the world around him.  Some things, like that loud train, had been there all along, but previously, Ronan didn’t seem to care about it.  

Ronan began to notice more things both inside and outside.  He saw an airplane going over his head and pointed to it.  He finally went down the slide at the park instead of sitting in the sandbox flicking sand for an entire park visit.  Ronan also started to reach for toys and played with them instead of ignoring them.  

That ‘wake up’ was years ago.  Ronan’s gone through several other wake ups since then.  Sometimes they last for a good stretch of time and we discover a new skill that Ronan has accomplished.  But sometimes, as quickly as Ronan develops a burst of new skills, he'll go back to an activity that tends to isolate him.  Ronan isolated himself again this week.   

Even with the burst of new speech we celebrated earlier this week, Ronan went back to an old habit.  He pigeon holed himself into an activity that I thought he’d outgrown. 

Ronan’s gone back to watching some old videos that he’d previously walked away from.  He gets so fixated on these videos, repeating certain scenes over and over and over again.  I’ve tried to gently redirect Ronan, but I understand that old habits are comfortable habits.  Ronan's comfortable habits bring a sort of calm.  Calm brings peace.  Peace generates hope.  I’m all for being calm, for bringing a sense of peace and for generating hope.  I’m all for that because with this old habit of endless video playing another old habit returned as well.  Ronan started looking out the window again.

My daughter and I noticed that.  We also noticed something else—Ronan isn’t getting frustrated when we're in the car.  He isn't  demanding to watch a movie every second of the car ride either.  Ronan is content to look out the window.  To watch the scenery go by.  To look at the world, a world that's been there all along.  

Today, when I saw Ronan looking out the window, I wondered what he was thinking.  Is he seeing something for the first time, something that the rest of us have seen countless times already?  Is he able to finally tolerate a sound he heard outside, a sound that used to make him cringe?  Or is he just looking out the window, enjoying the drive, grateful to be able to take in the sights, the sounds and the company that surrounds him?

I wonder what he sees.  

I wonder what he’s thinking.  

I wonder what he's going to teach me.  

I can't wait to find out what Ronan will teach me next. 

  

xo, Cat

Listen Closely

I’m always flattered when other parents reach out to me.  Sometimes they want to know my experience.  Sometimes it’s specific advice they seek.  Sometimes they just want me to be an ear to listen. 

I listen. 

I answer what I can. 

I promise always to be there.  

When the tables are turned and I’m the one seeking help, answers have been given to me.  I listen carefully to everything that is mentioned.  I jot down notes.  I look up what’s been suggested.  I may not always get to use the advice I’m given, but it’s nice to be heard. 

This journey hasn’t been the easiest, but it’s comforting to know that someone else understands exactly what it feels like to be in my shoes.  I’ll forget that every now and then and think that I’m the only one on the planet dealing with whatever it is that I’m dealing with.  But that tends to happen when I concentrate on what Ronan can’t do.  I forget the things he can do.  

Ronan can read.

Ronan can write.

Ronan can communicate.

Ronan can surprise us too.  

He did that this week when he responded verbally to a question at school.  Well, guess what?  He surprised us again last night.

Ronan said two words while we read one of his beloved Dr. Seuss books to him.  They were short words (am and in) from Green Eggs and Ham.  But they were said.  Outloud.  And with purpose.    

Listen closely, you’ll hear Ronan say ‘in’ in this video:

As the parent of a severely affected non-verbal child, I haven’t always been the most hopeful person.  I haven’t always kept the faith.  And I don’t always feel like getting back up again when I fall down.  But when I do remember to slow down, when I do listen closely, and when I get to see what Ronan can do, I can't help but believe.    

xo, Cat

Ronan has been inspired by Dr. Seuss's stories before.  He uttered a full sentence after reading The Cat in the Hat.  You can read that story here:  http://www.ageofautism.com/2013/06/look-at-me.html

Reprinted, with permission: When I Grow Up

I've been encouraged to showcase all of my writing in one place.  Today's post is reprinted, with permission.   

:)

Here is a favorite of mine.  I actually started writing this when Fiona was six.  I saved it in my writing folder always wanting to share it.  I finally got that chance to share it this year.  It was published on Age of Autism, August 17, 2014.  

When I Grow Up

When my thirteen-year old daughter was six, she was at the magical age of "Mommy, when I grow up I'm going to be a ballerina, veterinarian, singer and baseball player. Oh, yes, I want to be a Mommy too.  What do you want to be?"  Gosh, if I had energy to be all of that I'd join Fiona in her fun.  Most days I just want to take a nap, not do anymore work!

Fiona is heading into her teenage years.  Pretend play has been replaced with reading novels, playing video games and hanging out with friends.  Even though Fiona has outgrown most of the toys, her younger siblings are still knee-deep in pretend play. We both watch the younger siblings scatter her hand-me-down toys around the house taking turns making up the next imaginary adventure.  During the school year, with a heavier workload than the littles have, Fiona will sometimes complain about how they get too loud and take over not just the playroom but the living and dining rooms as well.  I remind Fiona that it wasn't so long ago that she too played as heartily as they do.  She'll get a gleam in her eye and say, "Oh, yeah. I remember."  We both laugh while also shaking our heads.  When homework isn't as tough and when deadlines for projects aren't looming overhead, I encourage Fiona to take a break and jump in and play.  She doesn't miss a beat and enjoys feeling like a little kid again.

It's fun to pretend and imagine ourselves elsewhere.  On days when things get really tough, like during one of Ronan's meltdowns after he’s lashed out and pulled her hair, I know that sometimes Fiona longs to be somewhere else.  She’d rather be with her typical friends in their quieter homes.  Those friends have never been asked to take over seizure watch while their mom runs to the bathroom.  They don't have to help change their 11-year-old brother's stinky diaper.  They don't have to sit in waiting rooms for 30-60 minute stretches feeling as if time is standing still.  While she's reading news stories about autism and asking questions about mito disease, some of her friends are posting pictures to Instagram and sends texts about a favorite pop star or television show.  Fiona’s in a different place, worried about different things.  Her experiences are very different than those of her peers, but I’m positive those experience will take her farther in life with good purpose. 

I can see why Fiona wants to hang out elsewhere--on the very tough days, I sometimes want to run away too.  We don't always have the luxury of getting her to social events with classmates but recognize how important it is to get some sort of respite from being the big sister.  Just as I need some down time, so does she.  To say thanks and to give her some time away, Fiona will get to do something fun out in town on the weekend with just Daddy.  She'll get to stay up later to watch a medical documentary or a film about World War II. Other nights she and I will have chips and salsa while we look at her old baby pictures.  Those nights bring the most giggles as we look back in time.  That’s when life wasn’t as busy, when it wasn’t as stressful and her head was filled with playful dreams she couldn’t wait to fulfill. 

Life is a little bit different now.  As Fiona has aged, her playtime has turned into study time—and not just studying for school, but studying topics like how food affects her. 

No stranger to dietary intervention, we were forced to begin an elimination diet for big sister not too long ago.  Fiona wasn’t happy about it.  But she knew that in order to understand why these changes were necessary she should research some of it on her own.  After learning why her body was reacting to foods as it was, she understood we needed to make big changes.  One option, one she really didn’t want to make, was joining Ronan in eating foods that were gluten free. 

Not satisfied with the taste of many of the foods Ronan eats and likes, Fiona asked if she could bake something for herself. Go for it, I encouraged her.  And she did.  Now, after months of tweaking, taste testing and perfecting recipes that intimidate a seasoned cook like me, we now have neighbors and friends requesting that Fiona bake gluten-free desserts for their family functions and open houses. 

Preschool dreams of being a pink ballerina have changed.  Fiona now wants to open her own bakery that will serve gluten-free muffins, cakes, breads and more. 

The cinnamon to delicious ratio is perfect.

I know that Fiona will be first out of the house.  I have a feeling she will go far away, too.  She won't be running away from us though.  She'll be running toward her dream—last year during spring break, Fiona looked up colleges that offer culinary arts degrees.  Her top choices are several states away in the northeast. 

I recognize how different Fiona's childhood is compared to the more carefree one that I had.  I don't like how she's had to grow up so quickly, but I have faith that her knowledge, passion and determination will guide her.  I also know that when she does go far, far away to explore and experience new people, places and things, the close family ties she has with her siblings, especially with Ronan, will keep her heart in another place--always with her family. 

When they were younger, big sister was the first to make Ronan smile. 
She still has a way to bring out the belly laughs. 

xo, Cat

The Means to Communicate

Ronan had language but lost his speech around the age of 2.  Since then, we’ve been praying that Ronan could regain his words.  Last week I was bemoaning the fact that Ronan only had 7 functional words.  He uses only five of them and only when he wants to.  His receptive language skills are through the roof.  His expressive?  Not so much.  For all intents and purposes, Ronan is non-verbal.  Out of all of the many challenges Ronan faces, not being able to speak is the one I worry about the most.   

For years, I prayed to God asking that Ronan get better.  Once, when my Mom came to visit us, I confided in her telling her how completely frustrated I was.  “Mom, other kids lose their speech, but with intense intervention, some of them are slowly gaining it back.  I’m praying about it, and I’m doing everything for Ronan like other moms have done.  But no matter what I try, Ronan does not talk.  I’m getting really frustrated.”  Mom encouraged me to continue to pray, and to be specific in my request for Ronan. 

I prayed, “Please, God, please give Ronan the means to communicate.”

Ronan would try so hard to talk.  But nothing intelligible would ever come out.  If Ronan needed something he would look at us, think he was saying something we could understand but would babble incoherently.  I would try so hard to decipher what he was saying, but more often than not, I was totally baffled.  He’d wait for me to respond, and when I didn’t know how to, he’d throw a tantrum. 

Because Ronan couldn’t verbally tell me what he wanted, he’d use his behavior to communicate.  Sometimes that behavior was negative and would include tantrums, aggression and tears.  That was understandable.  But was not an effective means to communicate. 

I wanted to give Ronan the means to communicate appropriately.  I wanted to reduce his frustration.  I wanted to help him gain expressive language skills that would hopefully lead to some independence.  His therapists and teachers and I tried everything—picture exchange card system (PECS), alphabet boards, flash cards and sign language.  Ronan finally responded to sign language.   

Responding to sign language opened a huge door for Ronan.  He’d already been exposed to it for quite some time as I used sign with his big sister, but early on, Ronan wasn’t interested in it.  Around the age of 5 though, not only was he interested in it, but he was hooked on it.  Boy, oh boy, was he hooked! 

Ronan quickly realized that when he signed, he got.  Like when he signed cookie to me for the first time, you better believe he got as many cookies as he wanted each time he signed cookie!

When Ronan realized he could ask for things and be given them (like a cookie, his ball, a favorite movie or a cherished book), things got a little bit easier, not just for him, but for me too.  It became less of a guessing game to figure out which snack Ronan preferred.  It became clearer for him that words = things.  Things = happy Ronan.  Happy Ronan = hopeful Mommy. 

We immersed Ronan in sign language at home.  For a stretch of time, Ronan averaged learning and using 7-10 new signs a week.  I labeled the house with flash cards with sign language signs and made sure to have the word or phrase also written on the cards.  Determined, his sign language vocabulary grew to over 100 signs within a few months.  While his sign language skills grew, so did Ronan’s reading skills.  I didn’t know that Ronan could read until he signed a word that was on a flash card.  This particular flash card had no picture, just a word.  Ronan had seen the word on a picture flash card elsewhere, remembered that printed word, and signed the word to us.  I was blown away.

For a stretch, we were on a good roll with Ronan’s communication.  But like with everything else I’d introduced, it felt like Ronan was about to plateau. 

I confided in my Mom again.  “Mom, Ronan’s language—it was going so well, SO well.  He’s signing.  He’s his words.  But sometimes he tries to talk and nothing comes out.  Or he says something, but it’s all garbled.  It makes no sense.  He gets so frustrated.  Me too.  What should I do?”  My Mom reminded me how excited and hopeful I was when Ronan began to sign.  She reminded me of the prayer I'd been saying too.  She also pointed out, “Cat, don't lose hope.  You prayed for Ronan to communicate.  Look at him.  He IS communicating…through sign.  If you want him to talk, then change your prayer.  Be specific in what you ask.” 

Duh.

So, I changed my prayer intention.

“God, please give Ronan his words back.” 

I’ve been saying that prayer for years.  And for years I’ve been watching Ronan use one word after another, even ones I never knew that he knew.  But he’s not using those words verbally.  Sure, he’s writing them, typing them and signing them, which makes me very thankful.  It’s just that, we all hoped that he’d be able to talk again.  We’ve heard his voice before.  And we miss it. 

After some thought, and some prayer, I consulted with Ronan’s siblings.  They are Ronan’s biggest cheerleaders and want to see their brother soar.  They also pray that Ronan can use his words again because they see how excited Ronan gets when he can successfully communicate with them.  

One night before prayer time, we thought and thought and thought about all the things that Ronan has overcome over the years.  It was so nice to hear the siblings recognize how hard their brother works to make each and every gain. 

Next, we thought about what it is we hope and pray that Ronan can do.  I asked the kids if we might change the prayer we have said for Ronan so that it can be even more specific than the other ones we’ve said in the past.  The response was a resounding yes.

That night, we started to say this prayer:

“Dear God, please help Ronan to speak, to talk and to have conversations with us.”  Ronan’s younger brother added, “And please help Ronan to play LEGOs with me.”  Little Buddy longs for his big brother to play with him. 

It’s been a few weeks since we started saying that new prayer, and I’m excited to share that Ronan said three new words today.  I got a message from his teacher that at school, Ronan replied, “I don’t know,” to a question he was asked.  Like at home, when we get to hear Ronan’s voice, it wasn’t the clearest of speech, but it was audible and it was an appropriate response. 

Three new words.

No, a full sentence! 

Wahoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I told my Mom right after I got the news.  Her response was, "Glory be to God!!!"  

Yes, glory be to God.  

We’ll be continuing to pray for Ronan as we do every day, but tonight, as we say our nightly prayers, we’ll be adding something else. 

Dear God, Thank you.  Thank you so, so much. 

xo, Cat

A Month of Sundays

I had a heart-to-heart conversation this summer with a good friend of mine.  Because she is so wise and grounded in the Catholic faith we share, I call her my Sacred Sister.  I always look forward to conversations with this friend, because I always walk away learning something valuable. 

AM and I talk just about everything—kids, marriage, faith, finances.  I cling to her words always knowing that I will use her knowledge in my home.  Just as has happened in past conversation, I walked away from the one we had this summer with renewed spirit.  I also walked away knowing that I needed to straighten up my act. 

I’d spread myself thin in some areas—spending too much volunteering for others.  And I was very aware that I’d been avoiding other areas—like our finances and my office. Ugh to the messes I’ve allowed myself to make.  

My family depends on me to keep things running smoothly, not bumbling them up, which I’d been unfortunately doing quite well.  That's when AM taught me the greatest lesson.  After listening to how disorganized I'd allowed myself to be, AM said, and made me repeat, “No is a full sentence.” 

She was right.  No IS a full sentence. 

I love to help people.  I love to work on life-changing projects.  But I needed to learn how to say no and to stick with that answer. 

It was time for me to scale back some activities.  So I did.   I managed my time better.  I rearranged my priorities.  I kept my promise to get organized and to remember to say no I needed to.  So when Sarah at The Puzzled Parent, who’s been encouraging me and supporting my other writing endeavors, sent me a message saying that I needed to start my own blog, I laughed.  I was flattered, but I laughed out loud.  

Then laughed some more. 

Like I have time to add one more thing, I told her.  But, here I am.  Writing this blog.  And getting my other work done, I might add.  Sure, I’m still learning how to update, format, save and publish the blog without making any mistakes, but this writing that I get to do, even if it’s just for me, just like getting myself organized, it’s exactly what I needed.  And it’s exactly what Sarah believed I could do. 

In the few days I’ve sat down to write, I’m finding myself truly writing for me.  Yes, I get to share my thoughts with you, but it's rewarding to have a little place here on the web to write every day if I need to and to post every day if I want to.  

I love that I can share my Sunday post on Age of Autism.  I appreciate that I can pop up a blog almost any time for The Thinking Moms’ Revolution.  And I’m honored to be able to submit articles to The Autism File when I’m asked.  But here, on this page, on this blog, it’s like I have a month of Sundays at my disposal.  I couldn’t be more excited. 

xo, Cat

Special Mother

A gift from my husband.  Mother’s Day, 2001.

Many of my friends already started their families long before I did.  I loved watching them welcome new life into their homes and wanted so much to also have a family of my own.  All my life I’ve wanted to be a mom.  In August 2001, my wish came true.  My first baby arrived.

Labor started Tuesday evening.  It ended Thursday afternoon.  To describe my labor experience as being long is inaccurate.  It was excruciating.  But like other mothers say, eventually you forget about the nerves, the anxiety and the pain.  All of that is quickly replaced by a new emotion:  love. 

Those other mothers were right.  I instantly fell in love with my little girl.  

She and I spent all day together.  Sometimes we spent all night together too.  Not the best sleeper in the world, I had to learn how to soothe a fussy newborn who had some nursing issues.  Without a good latch, my baby wasn’t getting a good feeding.  She struggled.  I struggled.  She was tired.  I was tired.  It was frustrating.  And painful!  But, within a few weeks, we finally both got the hang of it. 

Before giving birth, I had been teaching.  I taught for ten years and enjoyed every minute of it.  But after the baby arrived, I was fortunate to not have to go back to work.  I was grateful to have extra time to ease into motherhood with my daughter. 

Life as a mother was completely different, but it was a good different.  Each day was mine to plan.  Each moment was ours to create.  My daughter and I spent a lot of time in our small apartment during her first few months of life, but eventually we ventured out.  We ran into town to do errands.  We met my husband for lunch.  We planned meet ups with friends.  When we didn’t go out, I read and the baby played with her baby toys.  Then we napped. 

I loved being a Mom, and I couldn’t remember what life was like before having baby. 

I’m Mom to five babies now.  They’re not wee babies anymore, but they’ll always be my babies. 

So many things have changed since I first stepped into the role of mother.  We’ve moved several times.  Switched jobs several times.  Made new friends here.  And made new friends there.  We’re no different than lots other families in many respects.  But we have had to make several changes other families typically do not.  

I’d like to think I adapted well to some of those changes, including when I went from typical Mom to “Special” Mom.  But I’d be lying if I said that. 

Juggling Ronan’s medical issues can be intimidating.  Handling his special education needs can be exhausting.  His daily care requires focus.  And his long-term needs are unknown.  Being in charge of Ronan’s care can sometimes be daunting, but I quickly learn what I need to make things run smoothly…or at least to help some days run smoother than the day before. 

My days are full.  My kids’ schedules are busy.  I may not always get to choose what I want to do on a given day, but each day is still my own to enjoy.  Being able to enjoy the day, and all of what that day brings, gives me the chance to create moments.  Some moments are peaceful.  Some are tough.  But they are moments that I have created.  I am proud of some, and have had others that I wish had never happened.  But they are all moments that have taught me, that have shaped me, and that, like my children, will forever be a part of me. 

xo, Cat

Another gift from my husband. Mother’s Day, 2011.