Where the Sidewalk Ends

 

My Dearest LillyAnna,
I am a horrible mother.  I just want you to know that right off the bat.  I am savoring you and this moment today because you do not feel good.  You are in so much pain today.  Today is a bad day.  It happens like this for you some days.  We are supposed to go to the zoo.  Just you, no other kids and I am so excited to be able to focus on just you but I do not even know if we are going to be able to go.  Do you know what I am able to do?  I am able to sit in our old rocking chair.  You are curled on my chest and your sweet head is on my shoulder and I can smell your breath.  I can feel your breathing and you are so calm at this moment I can rub your soft baby feet as I rock back and forth. 

You are such a big girl, you never let me do this anymore and we will not be having anymore babies in this house.  It is so appropriate that you are deigning me honorable enough this morning, of all days, your third birthday to hold you this way.  This year you have been so busy!  You learned how to use the potty although it was not easy for you.  On the days that you had a lot of pain (which was usually 2-3 days a week) it was harder for you to remember.  But you have mastered it now and this past week you have even been waking up with a dry diaper every morning!  That is pretty good for a three year old. 

Your Monsters Inc. obsession has been replaced by Star Wars this year and your favorite characters are Chewbacca and Yoda.  Why?  Who knows?  Except that you have always been your own person baby.  You love to play with dolls and Barbies but you are just as happy playing with batman and light sabers.  Reading books is a major infatuation lately, especially poetry.  You are loving Shel Silverstein.  I read you two of his poems before bed.  Sometimes you look at me like I am crazy.  Let's face it, you are not too far off the mark.  And sometimes you laugh hysterically. 

We took you skiing this year and although I was too afraid of the wrath of Dr. R in the event of an injury to actually put you on skis I did take you snow tubing.  Your older brother was terrified but in true LillyAnna fashion you had no fear.  You grabbed the sides of that tube and screamed with passion and joy all the way down the mountain.  It was wonderful and made me cry. 

Speaking of Dr. R, he tried to make me take your bottle away this year.  I told him I knew how to do it, I mean I took the twins bottles away a week after their first birthdays.  He said to do it.  I warned him that I was worried you would dehydrate yourself.  He said do it.  I called him three days later.  You were dehydrated.  He said give her the stupid bottle.  When we talked about it later he said you are stubborn.  It is that stubbornness that has gotten you through this horribleness and you need it but it also sucks.  I like your stubbornness. 

You broke my heart about a month ago when you told me you do not want me to lay with you at night anymore.  You want Daddy.  You have stuck to it too.  My heart stays broken.  I bask in my days alone with you though.  The twins are in school all day now and I get to be alone with you most days for now. 

You also lost a friend.  Lucy and her family took us under their wing and showed us the way of this chronically ill child world and then they lost Lucy this February.  There are just no words for saying goodbye to a five year, especially one as magical as Lucy.  You truly enjoyed Lucy and so did I.  You always wanted to go to see her and sit in her bed.  Her mother Nicole has been a true friend to me and we miss them all. 

You are a three year old who still drinks a bottle but I do not care.  I remind myself that I have never seen a thirty year old who drinks a bottle and you will give it up when you are ready.  You know you own pain and ask for medicine when you need it.  You are good at that.  What other three year old can do that?  You also know the difference between a pustule and a mosquito bite. Impressive.  You really love lip gloss mostly as a result of the blisters you got on your lips for a few months this winter although you have not gotten them in a few months.  You really love to paint your nails.  You are particularly attached to your blankies; especially one made by Michele for your brother when he was a baby.  Like your other favorite blankets it has a satin border. 

On the days you do not feel well, like today, you sit in your pint sized lounge chair with blanket and bottle and watch movies.  It is really bad when we go through numerous movies, better when you are up and moving after one movie.  A great day is one where we do not need a movie and you are ready to go first thing like most three year olds... it happens. 

This summer we took you to NYC to see some docs.  It did not go well.  They did not know as much as we had hoped, we were the bugs under their microscopes.  But boy did you LOVE the city!  We did learn a big lesson.  It is time to move on:  we are to stop treating you and our lives like you are very sick and start treating you and our lives like you have a chronic illness.  As our docs said, this is as good as it is going to get.  Although this has encouraged forward movement and positive change in our lives, my chest is constricted in a vice... tighter... tighter.  This is your life.  There is nothing else we can do for your pain.  There is nothing else we can do but give you these horrible medications.  There is nothing to do but wait and see what happens next. 

 

And then there is so much to do.  We can watch you grow.  You are so much fun.  Taking you to the zoo and seeing your personality shine through when it is just you is beautiful!  I am enthralled and in awe and my heart beats fast.  Your independence is at a peak.  You are not big on dogs but you love birds.  This winter you really want to learn how to swim.  Strawberries, chicken nuggets without the breading, spaghetti and meatballs and cucumbers are among your favorite foods but you are willing to try just about anything.  Straight chocolate is just about the only thing you will eat when I cannot get you to eat anything else, but it has to be good chocolate.  You are simply amazing.  You are so smart and so kind and so intuitive and I love you so much. 

You told Nonni that your scars are beautiful.  You came up with that all on your own.  You have no fear and so much faith in yourself.  I think that is what people fall in love with when they meet you.  Because they do, people just fall in love with you wherever you go.  Happy Birthday my beautiful scarred baby girl... Happy Birthday.  I will just sit here and rock you until you decide you are done and get down.   When that happens my heart will break a little more because this moment will be over and there are so few left and you are so precious.  But I will also rejoice because watching you grow is a wonder and I am the luckiest person alive to be here to witness it. 

I love you,
Mommy
2014

Nothing Sticks Like a Shadow

I feel like we are living in the shadow of a circus elephant perched on one of those round yellow stands.  I am standing with my arms around my happy, unsuspecting family.  The elephant keeps looking back at me.  Every time our eyes meet, his seem to say, "I would watch out if I were you.  I do not feel too steady up here." like I do not know that... Guess what?  I do not feel very safe down here either. 

Living this new life has been interesting to say the least.  I am a piece of silly putty being pulled between being completely normal and being in crisis.  And then I can be pressed on any emotion and it is stamped on my face.  Poof.  Just like that.  For a little while I thought maybe it was working, we just ignore all these problems with Lil!  That's it!  She has a little breakout for a few days before her shots, we give her a shot and she gets better.  We can live like that.  Yes!  That is it!  Oh wait.  Then there is that elephant.  And then her birthday.

Her birthday...
LillyAnna was so excited for her birthday party.  It was all she could talk about for weeks.  I am not kidding.  She would hold up three fingers.  Those chubby little fingers.  In the wake of my first babies going to Kindergarten those chubby little fingers were so beautiful it hurt. She would look up at me with those huge brown eyes and tell me she wanted a minions cake.  The next day, while coloring I would hear the most adorable voice yell "Mommy!  Mommy!  I want Star Wars on my cake!"  We went over the list of who was coming to her party I don't even know how many times.  She kept asking me, is ___ coming to my party?  So if you think it did not matter to her if you were there... think again.  And if you wore her t-shirt, she noticed. 

 

 

Between all the fun, thunderstorms, humidity, lots of family and friends, and food LillyAnna had a great time.  My favorite part was when we came back to the house and opened the gifts (thanks to the thunderstorms).  Almost every gift we opened Mommom and I exclaimed, "Well, she knows you well!" or "He sure knows you!" because you all do.  She loved everything.  And we got enough money to pay for her swim lessons for the year.  Thank you all. 

But the next morning the elephant lost his footing.  Lil woke up in so much pain. Was it the weather?  Remember she has arthritis like a 90 year old so the rain and humidity could be the culprit but with her PG it could be just that the excitement was too much.  She also has a bunch of mosquito bites which sends her system into a frenzy giving her a bunch of pustules.  She now points them out herself.  Mom, I have a pustule and points them out with those heart achingly beautiful chubby fingers. This has continued for the past couple of days.  Her actual birthday was not a good day for her but more on that later today.  She is not awake yet today so we will see what it brings. 

The bright side?  There is a pile of birthday gifts and love propping up the elephant so he has not fallen over completely.  We are safe for now.  You are still our saviors and I am still weaving my way through this life. 

If you are near a radio today tune in to just about any Delaware radio station and listen to the WSTW radiothon.  Chris and I will be telling our story to help AI DuPont raise money to help them do the amazing things they do.  They have saved our family... saved our lives and continue to just that.  Check out www.nemours.org/radiothon for the stations that will be broadcasting our interviews.  We will be interviewed live so I cannot tell you exactly what time or how long each interview will be but the less popular stations usually interview for longer times and we will be there from 12:30 to 3:00pm.