The House at Pooh Corner

I am sitting on the couch right now writing this and choosing a title.  I chose this title for two reasons.  One, Lil has been loving Winnie the Pooh lately and when she feels like shit she wants to watch a lot of movies (over and over and over) so we have been watching a lot of Winnie the Pooh.  The second reason is that it is simple and comforting and soft and I feel awful.  Why do I feel awful?  I feel awful because I am listening to that happy little baby girl vomit her guts up again and again for the third week in a row.  To make it worse, when we are trained in the emotional side of giving injections we are told to tell the child that the shots are going to make them better and that is why we do it.  Well if that is my promise, I am breaking it.

You know those friends who are more an extension of your humor, your brain, and even sometimes your body?  I am lucky enough to have a couple of them (I have written about them before).  This past weekend I decided we were going to see one of them.  My friend Alana.  She lives hours away in New York.  I have lost so much weight from these migraines and stress that I need an entire new wardrobe.  As you all know, we are not in a position to purchase said wardrobe but this friend has a fabulous and sophisticated sister who lives in a very posh and fancy section of Manhattan who just happens to be my exact new size (shoes and clothes) and just happens to be getting rid of basically everything in her closets. Awesome right? 

Have you ever seen the movie Stand By Me (a short story originally by Stephen King)?  Remember the scene at the pie eating contest?  Despite the fact that Lil recreated it in my living room half an hour before we were to leave, I left anyway.  She puked most of the way there but we went anyway.  Ironically I puked more times while we were there than she did!  Damn migraines... and possibly food poisoning.  While there, we went to the Chelsea Market, Lil was in a stroller and when she stood up her legs actually buckled under her.  She turned, looked at me and just started crying. I have never seen that happen before.  The thing that really bothers me is that when we were at her Rheumatologist two days before that and she was dancing around the office.  Notes state that she looks great!

Dr. B tells us young children who have had pain most of their lives are like this; they can go from happy go lucky to pain in seconds because they are so used to pain they act like they are fine most of the time.  This is why people always say, "she looks so good!" and she does a lot of the time.

But the doctor did not see the fear, pain and confusion on her innocent face when she turned around and the depth of those big brown eyes when they met mine as she stumbled, tried to catch herself and realized those legs just could not be trusted.  It was quite a moment for both of us.  And I have a witness.  My friend asked why I need that, why I need people to see what I see, why do I not trust myself. 

I do not know the answer to that question.  I don't know if I do not trust myself and I need someone else to see what I see so that I can feel more confident.  Is it because people question me and I feel like I need back up?  I truly do not know but it is good to have people see what I see.  My gorgeous family has graciously offered to spend time with Lil while I work during the day.  As you know, she cannot go to daycare.  Now that I have people caring for her for longer periods of time they can see what I see.  It is good for everyone involved in her care. 


Once again LillyAnna just loved New York City.  She just eats it up.  And my friends in New York take such good care of me and my babies that it is near to impossible for them to not love anything that involves them.  At one point I turned the corner in my Christina's apartment, the kids were standing on the counter and Christina was standing there helping them pick out gourmet chocolate more expensive than I care to think about and then laughed while they ate it.  This being their first time to the city, the twins absolutely loved it. 

On our last night there I was fighting Lil to take her medicine. Alana watching helplessly hoping to do something but having no idea what to do.  There was really nothing to do.  When Lil does not want to take her meds, it is a real fight and not for the faint of heart.  Alana asked me later, why do you think she does that?  My only answer was that I think she is just tired of it all.  Tired of the pain, tired of the medicine that tastes bad, tired of the feeling like crap... tired of being sick. 

This bed is one of the happiest places I know.  This past weekend I had the chance to share it with my babies and my friend embraced them and all the baggage and drama that comes with them and me.  She would not even question this... would not even think about it.  But to me, to us, it means everything.  Family means so many different things in my world.  It means depending on my aunts and uncles to give up their time to watch Lil so that I can work and coming home to a baby who is well cared for and a house that is cleaned up and has fresh flowers on the table and laundry done!  It means depending on my mother in law and close friends to do the same thing.  It means not being able to give what I used to be able to give and having people love me just the same, in some situations even more.  Family is always there. 

One of the most painful parts of Lil's illness for me are Nettie and Chris.  As Lil's illness increases in its anger as it is now, they have their own ways of showing their anxiety and with the trip to the NIH coming up they have even more to worry about.  Chris gets especially worried about his sister but Nettie told me last night that the next house we get needs to have thicker walls so she cannot hear Lil throwing up all night because it makes her sad.  Chris has been building this little tent in the living room the past couple of nights.  Finally I asked my husband Chris what it was and he said Chris told him it is a healing tent.  He is putting a couple of his favorite broken toys in it each night and we are not allowed to take it down.  I am afraid to ask him more about it.  I know him too well.