Just Say It

You’ll excuse me if I self-indulge for a minute or two.

Sometimes being Lily’s mom is hard. Please don’t misunderstand, I don’t think there is a mother out there who can’t say that it is a hard job – balancing responsibilities, conflicting needs, finding a balance that keeps you sane while still meeting the needs of those who depend on you – it’s a job for a superhero. So, while you’re reading this, please don’t think that I think our life is any harder, I’m just writing from my own experience as that’s all I know. That is what I mean by self-indulgence.

So yes, sometimes being Lily’s mom is hard. I recently mentioned that there is a significant difference between Lily’s chronological age (2 years, 9 months) and her developmental age. When I speak of that I mean how she is doing when we look at how she is developing as a person – hitting milestones like crawling or walking, her ability to speak and to understand – the skills that a person needs to become self-sufficient. While Lily may be almost 3 years old, developmentally she is closer in age to an 8 month old baby. Lately we’ve been incredibly pleased with her development as she moves into the fun age of a toddler – her new interest in eating, her fascination with the dog, totally getting a kick our of other kids – these are all amazing things. The first time that she laughed, a full out belly laugh, or squealed at the anticipation of being tickled, we stood there in shock and awe at how fast these developments are happening and how quickly she’s developing her own unique personality.

But, anyone who has ever been around a baby, knows that they also come with their fair share of frustrating, want to pull your hair out, moments and we’ve been experiencing that for more than 2 years now. That’s when it can get hard: when she is screaming for hours and won’t stop crying – can’t stop crying – and you wish for just that one moment that she could communicate; that she could just turn to us and say, “dudes, I am totally constipated, I have a tooth breaking my skin and you left me alone with these crazy people in white gowns who stuck a needle in my arm.” And while I would never, ever ever ever, change a single thing about that awe-inspiring little girl, there are times when the challenges become overwhelming and I’m left feeling frustrated, disappointed in myself and wondering if there isn’t something that I’m missing, more I could be doing. Most of the time we’re lucky as Jess and I rarely get to this point at the same time and we can be each other’s touchstone – a guide out of the dark spots. But this week has been challenging, in a no sleep, endless crying, wish we could understand what is wrong, kind of week. There have been tears – from Lily and from me and I would happily trade a crawling milestone for the talking one, even for just a single day.

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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.