Rubber Ball Life

If I have learned one thing in my short but dramatic life, it’s that life really does work like a rubber ball – it bounces up and down between happy things and sad things before you can even realize what’s going on.  I know the mom’s are wishing lately that there would either be a few more happy things or even just that the sad things would be spaced out a little more so they could at least take a breath in between bounces.

I had a new dog.  His name was Otis and he was tiny like me, and funny like me and almost as adorable as me.  Mama C was really sad about Ellie not being around anymore so Mommy decided to surprise her and found a new puppy for us.  Otis came home to us on the Friday night after Ellie went away and we had a really good weekend.  But then by Monday he was really sick and the veterinarian told the mom’s that he had something called Parvo, which is very contagious in puppies and means that they can’t live anymore.  So, the mom’s had to put him down like Ellie, because by the end he was too sick to even move.  The mom’s were surprised at how fast it happened and felt really bad that they weren’t able to do anything else, but knew that it was for the best.  Either way, I miss my friend Otis.  I actually really liked him – he was very gentle with me (after the first day when he used my foot as a chew toy) and he just scampered around the house making everyone laugh.  Poor Otis.

So, that was the sad thing.  The problem was it was just one more sad thing on top of a whole lot of other sad things in a short period.  Between Grandma dying, me having seizures, Ellie dying and then Otis dying, it has been a hard 6 weeks for the mom’s.  Mama C decided that it was time for a little reality break so she’s off on vacation for the next two whole weeks! We’re just waiting for my new cousin, Baby Ollie to be born and then we’ll go to Grandpa’s house in Frankford and spend some downtime just hanging out in his nice house by the water.

But there have been good things happening too! The smiley happy me that made an appearance two weeks ago seems to be sticking around.  All day long I’m just happy to just sit, bounce my feet all around and smile these big huge smiles.  I’m giggling more and now I can’t stop talking.  A lot of the times I’m just playing with different noises but the mom’s have caught me babbling a little bit too.  Everyone who comes over: Janet (my vision worker), my OT Kristin and Kathy and Barb from Surrey Place (Infant Development and Speech and Language) say that it’s like being around an entirely new kid.  They’re amazed at how much I’ve changed in just a few short weeks and they’re so happy that I’m learning new things all of the time.  And I LOVE seeing people.  I’m not even shy a little bit.  This weekend my cousin Alex and her boyfriend Aaron came to visit and I was so happy to just play and smile with them, but it doesn’t seem to matter who’s looking at me, I just want to show them how happy I am.  I don’t really care about toys or stuff, but I love the people in my life so very much.

And it seems to all be because the new medication the doctor’s put me on for my seizures seems to be working so very very well.  I haven’t had a single seizure in almost 3 weeks and my brain is definitly not feeling as fuzzy as it was before.  You can tell just by looking at me that I’m feeling so much better.  The doctor’s were really happy at how well I responded to the medication and were happy that I didn’t have to go onto the other one.  They were even able to give the mom’s a baseline for my development, which made them happy because a) it’s been a long time since anyone has been able to do that and b) they weren’t too far off the mark themselves.  The neurologist says that I’ve developed to about a 4 – 6 month old baby, which at first seems not so good (seeing as I’m 14 months), but is actually pretty amazing, seeing as my brain was pretty much re-set in July.  It’s almost like I have 2 birthday’s to count from.  I have my December birthday which is my actual age, but then I have my brain birthday which is July and would make me 7 months old.  So the mom’s are really really happy with how far I’ve come since I was that little baby in the PICU that wasn’t moving at all, couldn’t see light and couldn’t breathe on her own.  When you put it that way, I’m pretty amazed myself.


Much Needed Sunshine

While my tiny giggle hasn’t turned into full out squeals of laughter yet, I have decided that it was time the real me, the smiley, happy, always content, can’t stop squirming me, made a grand reappearance.  After December being a bit of a wash out with colds and probably some funny brain stuff, and January being awful because of my new medicine, I realized that it had been too long since the mom’s (and everyone else) had seen what I can do.  This week I’m turning it on strong.

I’m determined to sit up.  I like the whole world a lot more when I’m sitting up – I can see things better, and kick my legs better and grab my feet easier.  But my arms still aren’t quite strong enough to help me get there.  But I’m determined.  Lately, I’ve been experimenting with trying to use every single muscle in my core to spring up into a sitting position.  Apparently it’s pretty funny because it makes the mom’s laugh and laugh and laugh.  If I’m being honest it probably does look pretty ridiculous, so I should probably just keep working on making my arms strong enough to help me, but trust me, if I can figure out a way to do this without my arms, I totally will.

I’ve also been so very happy – I just can’t stop smiling.  I love to hear the sound of my own name, and I love to see people’s faces smiling back at me.  And I really really love the sound of the mom’s laughing – it just cracks me up.  Tonight, it was our weekly dinner date night with Gramma and Pa and that was super fun too.  They hadn’t seen me so happy and lively since Thanksgiving, so I think it made them pretty happy to see how active and bouncy I am.

But the best part of the night was when Pa got to hold me for a really long time (he’s really comfy, it’s like he’s been holding kids for a lot of years!).  We got all settled in nicely and then he started to sing for me.  Mama C always told me that there were two things about Pa I needed to know: he sings really well (when he’s not just fooling around) and he gives the best hugs in the world.  I learned about the hugs a long time ago, and I’m glad to know now that she wasn’t lying about the singing either.

A True Lady

Once upon a time there was a dog and her name was Ellie.  Ellie and I had one big thing in common – we were both adopted by the mom’s because they knew we were the right fit for their family.   Ellie came to live with the mom’s on the very same day that they moved into our home.  They didn’t really plan on getting her, but as the story goes they saw a picture of her and fell in love – kinda like what happened with me.  So they drove to a far away place called Port Hope and met Ellie in person.  They knew that she was going to come home with them when she followed them all around even though they didn’t have any treats.  And when she got home she fit right in like she had always been there.  She staked out a spot under the tree by the front steps to sleep in the shade, she learned that the mom’s loved her best when she would nuzzle in (they called them her hugs) and most of all, she figured out that if you were sitting on her couch and she looked at you in just the right way, she could get anyone to move and let her get up instead.

But tonight, Ellie is gone.  The mom’s explained that over the summer Ellie hurt her leg and even though they tried to make it better and then give her lots of medicine to stop it from hurting, it was just hurting her too much.  She was having a lot of trouble with the stairs (she fell a few times), when she wanted to get up on her couch she couldn’t because it hurt too much to put weight on her leg, and her shoulder was just so big and swollen that they were just being selfish keeping her with us.  So, tonight I stayed with MeMa and the cat, and the mom’s took Ellie to the vet to say goodbye to her.  They’re both very sad, but Mama C is really really sad – she says that Ellie made her and Mommy a family.  I tried to help by smiling lots and lots today, and I even threw in an extra surprise and really giggled for the first time just so that they knew I loved them and that I’m going to miss my dog Ellie too – she was really good at cleaning my face.

Not So Amazing

Taking a quick break from a long work day for a quick Mom post….

In light of Lily’s recent posts about new seizures and new challenges, we’ve had a lot of conversations/comments about how Jess and I are “inspiring” or “amazing” or “so brave” or even more, “I couldn’t do it”.   While we can fully appreciate that these comments come from a place of love, it can sometimes feel a bit overwhelming.  We do what we do with Lily is because she’s our daughter and we love her.   She brought so much joy and peace and laughter into our lives, just like any other child brings any other parent.  What we do is not a choice.  It’s simply doing what any other parent would do.  You act.

But this girl, she says it so much better than I ever could…enjoy.


Today the mom’s decided that there had been enough being not so happy about all this seizure stuff going on.  I have to admit that it wasn’t a great weekend.  The medication has been making me very tired (which the mom’s don’t seem to mind sooo much because apparently I’m into a good “routine”).  But I’ve stopped smiling at them and sometimes get a little lost in my own thoughts and I forget to look up at them.  But, they have noticed that I’ve been looking at lots of bright and shiny things, so they decided to help me in their own unique way…

They bought me a fish!! He’s very pretty and bright blue and just swims around making bubbles and splashing the water like I do in the bath (but I don’t hear the mom’s telling HIM that he has to splash with both arms, uh, fins).  We actually went to the pet store yesterday to get him, but apparently all the fish at that store had died because they were displayed too close to the front door and they got too cold (they should have talked to me, I could have told them how to make a come back).  So, while we got the stuff to make his house all nice yesterday, we finally went and picked him up from a different store today.

He’s very pretty, but if I’m being perfectly honest, I would have preferred a guinea pig.  While we were at the pet store today I was a little whiny so Mama C took me over to look at the birds and the reptiles and the hamsters, but as soon and she kneeled down so that I could look at the guinea pigs, I just stopped whining and sat watching them.  They are almost as cute as I am.  Someone walking by warned Mama C that they make a lot of noise, but she just laughed and said that they would just fit right in.  I think I heard her trying to convince Mommy that I should have one of those too, but I’m not sure who won that battle because I fell asleep.

So, now the fishy is at home in his new house, which we made all pretty with some rocks and a plant, but the very best part is that the mom’s let me name him all by myself!  This is what I picked….


The mom’s say that we will have to  spell it phonetically (whatever that means), so I hope you’ll all be as nice to Aaahrah as you are to me!