Friday, June 28, 2013

Finding all the answers

Over the last couple of weeks, Ronan has discovered something - his open heart surgery scar.  One night as I was changing him and getting him ready for bed, I saw him look down and touch the scar.  He ran his finger up and down it, as if he was trying to figure out what part of his body this is, and why it is there.  I've found him doing this a few other times. 

I've often thought about what I would say to Ronan about his open heart surgery and his heart in general.  About what I would say to him about his hearing loss and why he needs hearing aids.  About CHARGE Syndrome.  Every child will need to deal with being different at some point, but in Ronan's case his differences are a bit more evident.  Given that fact, we've had some experience with explaining what is going on with Ronan. 

I actually find most children's questions about Ronan refreshing.  There is no judgement, just genuine concern and curiosity.  I remember when Ronan was wearing his helmet and we took him to the Santa Monica aquarium, a cute little boy approached us.  He pointed at Ronan, and looked up at me, and asked in a concerned voice,
It's Super Ronan!

why does he need to wear a helmet? 

I told this little boy that Ronan had been sick and spent some time in the hospital.  I told him that the time spend recovering had made a flat spot on his head, and the helmet would help.  Then this little boy said,

Oh. OK.  I hope he feels better.  

Then after a pause, he asked me, do you think my head is flat too?  I had a cold awhile ago.

With adults, though, you get that look.  That look is either terror (WTH did I get myself into asking?) or pity (aww poor little boy).  I always try to follow up quickly with how well Ronan is doing and how happy he is.  He really is a happy little boy. 

Although I've come up with my repertoire of responses about Ronan, I have yet to come up with what I will say to him.  It terrifies me.  And seeing him cognoscente of his scar, reminds me that I will need to find these answers. 

At the beginning of June, Dateline did a show on a family whose five children all have cardiomyopathy, a form of heart disease.  Two children had received heart transplants.  A third was showing signs of heart failure.  What really struck me though, were two things.  First, if I thought it was scary sending an infant into open heart surgery, I am even more scared to send Ronan in for
another surgery now that he's older. 

He may be bigger and stronger, but I'm not. 

I don't know what I will do when he tells me he's scared, or angry, or worried.  The other thing that I found amazing about this segment was watching the parents talk to their children.  They explained what was going on, translated medical terms, and were able to relate to the appropriate age of each child.  That takes a certain kind of grace. 

For now, I've started reading Ronan his Zip-Line book again, which is a children's book about heart surgery and scars.  We will also continue to approach questions with positivity, and make sure that happens in front of Ronan.  Sometimes I think people forget that even if a child has a special need of some kind, it does not mean they do not understand the conversation.  There have been a few cases when I've wanted to say to someone, hey, Ronan is right here.  He may not talk, but he understands a lot more than you'd imagine.  It is my hope that he picks up on the positive attitude that Paul and I try to put forth with all things Ronan, and especially all medial things.  This kid has already beaten so many odds, it would be a shame for him And, I hope that when the day comes to answer his questions, I will somehow have those answers. 

Tuesday, June 25, 2013

A dream is a wish...

Happy Father's Day!
Over Father's Day weekend, my mother came out to visit and we all took Ronan to Disneyland!  This was Ronan's second trip to Disneyland.  His first trip in January was great!  He loved the rides, and his favorite was the Haunted Mansion.  This trip, however, was totally different for Ronan.  I think he was just a bit more advanced and aware.  Not to mention, Ronan is in the process of getting the last few teeth. 

Ronan loved walking around the "A Bug's Life" area.  He seemed to like looking at all the large packages and plants.  We've just started putting movies on some weekends while we are playing with Ronan, and he really enjoys Monsters Inc.  I thought he'd love the ride, but instead he was terrified.  Same goes for Ariel's ride and Toy Story.  I think Ronan was just much more aware, and found things scarey.  I was a bit disappointed until a friend pointed out how very normal this is for a toddler.  And for a moment, it felt really good to have some typical toddler issues!


At the very least, Ronan enjoyed looking at the people in the park.  He's a people watcher.  His other favorite thing is to laugh at people's shadows.  Best part about this is that people have no idea that he's laughing at their shadow, it just seems like he's laughing at you :).  Ronan did get to see a lot of characters, but given his general reaction to some of the younger rides, we didn't try to take his picture with them.

We stayed at the Paradise Pier hotel, facing California Adventures.  There were two wonderful things about this place: first, we were super close, and could easily walk back for nap time, and second we got to watch World of Color from the hotel room.  During Ronan's first trip, we stayed at the Grand Californian, which was also close enough for nap time.  This is definitely the way to go with a toddler.  You know all those children sleeping peacefully in their strollers?  Ronan just pointed and smiled.  He was NOT interested in sleeping in his stroller, or resting at all. 

The adults, however, had a great time! Grandma got some wonderful snuggling in, post-Disney, and Paul and I got to go on some of our favorite rides. 
Grandma snuggles are the best!

Saturday, June 8, 2013

Ronan at Play

Ronan's car track toy
There is something amazing about watching Ronan play.  I don't know why, but I cannot get enough of watching him think, problem solve, and figure things out.  I suppose it is because Ronan is our miracle child, a little boy who has defied the odds.  A little boy who has done so much more than anyone imagined. 

Ronan has several favorite toys right now that are luckily ones that his therapists are also having him play with.  These toys all work on various skills that we are working on with Ronan.  This first one is a track that you put cars on to travel down.  What I love about it is watching Ronan try to put other objects down it.  He will put blocks, balls, and just about any other toy down this track.  I've even watched him try to put a book down the track!  It also encourages him to reach and manipulate.  Ronan has to pivot and change positions to gather the cars and position the track.  He has to problem solve. 

Trying the car sideways

Another toy Ronan has started playing with is one where you use a hammer to push balls into a container.  Ronan loves trying to figure out new ways to get the balls inside, and new ways to get the balls out. It helps with a few areas.  First, it helps Ronan with his hand strength and dexterity.  Second, it helps with problem solving.  We also work on colors with it.  I haven't gotten Ronan to use the hammer yet, but he will hold it and manipulate it.  He has also figured out how to push the balls in without using the hammer.

A third toy that I highly recommend is a board with gears.  This is something that Ronan's school has, and that we also have.  This toy has both small and large gears.  Ronan has to manipulate the gears to be in the right orientation and place them on the board so they interlock.  He can then try to spin them.  He loves this toy!  He could put gears up and take them down all day.  We also work on putting the gears away in a container, and with taking them out of the container.  This toy is a favorite of our OT, and for developing Ronan's fine motor skills as wall as helping him learn to follow directions. 

Trying out this variation of gears
In the last few weeks, Ronan has made so much progress with his play.  He tries to figure things out.  He doesn't get so frustrated when he can't make something work the first time.  And better yet, Ronan is starting to play while he stands.  He can stand at our coffee table or at his desk, and play or read a book.  And here is one more picture of our silly little boy...

He put this pillow on top of himself

Sunday, June 2, 2013

San Diego Half Marathon

Today, Paul and I ran the San Diego Rock and Roll Hall Marathon!  We had a really fun time, and felt great. What made this race special for us is that Ronan trained with us. He went on every single training run, high fiving us the whole time. Unfortunately, no jogging strollers were allowed, so Ronan spent the day in Santa Monica. 

It was a great running day - not sunny, and fairly cool. There were about 20 thousand runners!

We ran with some interesting people...

And some Elvises...  Note that their jogging stroller carried a radio playing Elvis and Bud Light. 

We even ran with Princess Leia!

But on a more inspirational note, several members of the military ran it too. One in particular, ran with his prosthetic legs. Amazing.  Unfortunately, I wasn't able to get his picture. 

We finished right around 2.5 hours. Not bad!  

One final inspirational item - this guy finished the marathon faster than we finished the half marathon... In a wheelchair.