Good Days and Bad Days

I don't know if it's because Lillian turned 7 months last week, or if I've just been reading too many PWS emails/newsletters or if it's because we've doubled Lillian's therapy sessions, or had her EI evaluation and started talking about the future... but I'm in a funk.

Sunday during church I fed Lillian and listened to the sermon.  As soon as the minister was done I got up and walked out because I just couldn't sit there anymore and keep it together.  Wandering the hallways I tried to re-group, went to the restroom to wash out Lillian's bottle and tube, and decided to just keep walking the hallways.  I don't like crying, and I certainly don't like losing it in public.  Right about the time I pull it together I hear someone yelling my name, look up and see a good friend of mine on the second floor waving me to come say hello.  So I head up there and of course the first thing he asks is... "How are you doing?"  If only he knew how loaded that question was... he probably wouldn't have asked.  I lost it.  Thank God he's one of my best life long friends and a great listener.  And thank God he didn't say something stupid and cliche like "It'll get better."  He just listened.  I needed that.

So let me explain the funk, and then we'll move on to the happier things in life once I get this off my chest. 

The funk started with her aging.  She's 7 months now.  Obviously this is inevitable and ridiculous for me to get upset about, but the older she gets the closer we get to the "unknown" about PWS.  At this age I know what to expect.  I expect her to be lower tone than kids her age, not as hungry, easy to put down to sleep, adorable, sweet, happy, all smiles, proud of herself for her milestones, still in diapers, coos and babbles, ya know - the baby stuff.  We have no idea what to expect as she gets older.  And all you hear about are the horror stories. Google it if you want to know what they are. I'm not going to repeat them here. 

No matter what the future holds she'll be my Lil' Bitty and I'll love her to pieces and will be proud of EVERY SINGLE accomplishment that she ever reaches.  I hate myself for crying about her future.  It hasn't been written and I try my hardest not to write it for her.  It's hers... and damn it we ARE going to enjoy her life's journey. 

But, there are days when I'm just a little bit broken.  I fight back tears when other people are around.  And when it's too much to hold back and I lose it (like in church the other day), hearing myself explain why I'm upset just makes me feel silly.  I mean, honestly I've been given the most incredible little girl and here I am crying about things that haven't even been determined.  Fear.  She deserves so much more credit than that.

So we find joy in this life.  We go on playdates to the Children's Museum and walk through the Barbie exhibit and create our own Barbie wardrobe out of scrap fabric and hair ties. 

We get lunch with Grandma and purchase the cutest little sandles for our upcoming trip to the beach.

We swing at the park, do silly things with our hair after a bath, and snuggle up close with daddy for a much needed late afternoon nap.

And we cherish these moments before they slip away and become the past.

If I had a crystal ball and could look into our future and have it look anything like the present I would stop crying, pull my crap together, and leave the future where it belongs.  But since there's no magic crystal ball we'll continue to take things one day at a time.  And squeeze every bit of joy out of this life. Even on the bad days.


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