Each Little Bird That Sings

Have I told you yet about how much LillyAnna likes to sing?  I will often wonder where she is in the house when I am working until I hear her adorable little voice.  Following it like Hansel and Gretel's breadcrumbs, I find her laying in her bed singing loudly in what 'yogis' call the happy baby pose.

This past week she absolutely sang.   LillyAnna loves people.  She is the kind of kid who makes friends wherever she goes but I have to admit they are mostly adult friends.  In an effort not to leave anyone out, I hate to name specific people because it will inevitably be someone important but I am going to take a chance.  LillyAnna loves the phlebotomists at AI.  She calls them her "girls".  She loves her Aunt Tina, Aunt AnnaLouise, Nonni, Granny, Aunt Coco, Aunt Renee, Aunt Lulu, Amanda, Mommom and Poppop.  The list could go on and when we go places she just makes more friends. 

Our trip to the beach was no different.  My family is full of love but watching Lil be the center of that family, watching her pull people together and gather love around her was fascinating.  Love and happiness follow her like the wake of a boat.  I am in awe of her ability to inherently grow happiness and wonder in just about every situation.  It surrounds her and brings those around her closer together.  It makes those around her happier too and they just simply want to be around her more.  How is it possible when she is in so much pain all of the time? 

This is why it is so frustrating to me when people do not believe she is in pain or say she looks fine.  I know what is underneath all of that.  LillyAnna and I are so connected.  I know someone who had to make a very difficult decision once when it came to a chronically ill child and end of life.  My only advice was to make sure that she was ready to take it on because at the end of the day, every day, it was only going to be her and that baby.  It is true.  My family would do anything for us, my husband is amazing.  But in the end it is Lil and I, every day.  We are connected in every way.  She may want Daddy to put her to bed every night but when she is in her worst pain she only wants Mommy.  It is so hard when people question that connection.  And when people honor it, I just hug them... and sometimes cry in relief. 

It is in this way LillyAnna sung on vacation.  She wrapped our whole family in that love and happiness.  As you all know, my mother died right before the twins were born.  My dad is now engaged to Sherry, the kids' grandmother in every way.  They have three wonderful aunts and great grand parents.  Lilly wrapped us all up, pulled us all in and it was wonderful.   She also brings Chris and I closer together.  Love is a funny thing.  Marriage is even funnier.  After eleven years I have learned that although sex is great, marriage is certainly not about that, especially when you have a very sick baby and a sick Mommy as well.  Love is about sticking together.  Finding things that make you joyful.  Not giving up.  And doing it all no matter what happens.  It is what family is all about too but with family you have no choice, not really. 

Every week LillyAnna gets shots.  One of them is a chemo drug.  It makes her pretty sick.  The night she got it on vacation she woke up on her back vomiting like a fountain.  At three am I had to put her in the shower and wash her shivering little body while she cried hysterically.  My dad (who broke one ankle and sprained the other a couple weeks before a BEACH vacation!) scooted out on his knee scooter to rub her tired, sad little head until she fell asleep while an oppressive feeling settled over the house.  It is just not right. 

 

 

 

 

How else did she sing?  She went on the Ferris Wheel and cuddled up to her Aunt Coco.  She rode the motorcycle ride with the purest look of joy. It was literally painful to take her off.  She dug in the sand and jumped over waves.  She napped on the beach.  And every once in awhile I would catch her looking off into the ocean, just staring.  What is an almost 4 year old thinking about at moments like that I wonder?  My almost 4 year old needed a stroller.  My almost 4 year old needed some hard core pain meds.  But my oldest four year old sang.  She sang in so many ways.  I am just lucky, we all are, to know her and to have her as a checking point.  When you have a cold or your knee hurts or you have a bad day at work think about that almost 4 year old and how she sings. 

I got to spend some quality time with her this week and hit my own reset button.  I was able to cuddle with my babies and sleep next to their snoring little bodies.  I actually had coffee with my dad and ate meals that I cooked with another woman which always relieves some of the pressure.  I am always in awe of the power of groups of women. 

When you feel weak this week, hear Lilly sing.  Usually it is a Taylor Swift song but sometimes it is nonsense she makes up.  Whatever it is, it is happy.  Let her song surround you and then let it fill you up.  She cannot say it but I know it is what she would want.  When she sees people smile, she hugs me and smiles the biggest smile.  It is like she knows, like she knows she throws out a force field of strength and goodness and it fills her up.