Inside Out and Back Again

If you follow my blog you know that "just keep swimming" first sung by Dorey the fish is a mantra I hold dear to my heart.   Last night I was trying very hard to keep my happy face on but this week has just been too horrible and the surface cracked enough that people could tell I was not myself. Finally I told one of my dear regulars, after having asked if I was ok about 5 times, that I was doing what I always do, chat Dorey says: "just keep swimming" and her response was "Yes, but no one says you have to swim alone."

That has been my lesson this week. I can no longer carry this burden alone.  I know that no one is asking me to and in fact many, many people offer their help and support. I am just going to get better at accepting it.  I have to take better care of myself. When we were in patient last summer one of the amazing staff on 3F would start her shift by stopping in Lil's room and asking when I had last eaten, slept and showered. If I could not answer.... It was taken care of. No one does that at home. At home I expect myself to be Wonder Woman. Perfect in every way and when I fall short, I beat myself up mercilessly and push myself to do better. It is a viscous cycle because it never ends, I can never be perfect and so each time I fail I fall further and further behind and push harder and harder failing more miserably.

Sometimes is never quite enough

If you're flawless, then you'll win my love

Don't forget to win first place

Don't forget to keep that smile on your face

Be a good boy

Try a little harder

You've got to measure up

And make me prouder

How long before you screw it up

How many times do I have to tell you to hurry up

With everything I do for you

The least you can do is keep quiet

Be a good girl

You've gotta try a little harder

That simply wasn't good enough

To make us proud

I'll live through you

I'll make you what I never was

If you're the best, then maybe so am I

Compared to him compared to her

I'm doing this for your own damn good

You'll make up for what I blew

What's the problem...why are you crying

Be a good boy

Push a little farther now

That wasn't fast enough

To make us happy

We'll love you just the way you. are

If you're perfect

I know it is in my head but when people say "but she looks so healthy" and I hear "it must be you, you must be doing something wrong." When people

say things like "maybe you should try feeding her _____" I hear "you are not a good enough mother" and when people say "well I wouldn't give her that medicine" or you should..." I hear "you are a piece of shit".  And when it is dark and she has been vomiting for hours or when we are alone in the morning and she is holding her legs in pain or when I am scanning her body for lesions or when I am watching her put food into her mouth and take it out and put it in and take it out all of those things I hear come traipsing through my brain like a comic clown parade. They mock me. They tell me it is my fault my baby is still in pain and that baby is not growing, or worse, that baby is just fine and I am making all of this up, exaggerating it all somehow.  

Add on top of that my need to be the perfect wife, housekeeper, friend, bartender, school board member, author, mother of four year old twins, niece, daughter, sister, daughter in law, aunt, sister in law, hostess, cake baker, and caretaker and the pressure cooker is going to explode my friends. Let me tell you. I have been trying to do it all and do it all very well. I am not by any means saying I am succeeding.  But I am trying.

I am writing this to you on my phone at midnight because LillyAnna will not go in her crib. She says her legs hurt. She has been vomiting since 9:30 and her hands and feet have been swollen all day. I gave her pain medicine but of course she vomited soon after so who knows if it got into her system or how much. She has a temperature of 100.7. Last week her bloodwork looked her strange, or as Dr R said "it is weird". Her white blood cell count was quite high, sed rate was high but CRP was low...

Makes no sense. However most recent bloodwork looks better. Tomorrow we will get more bloodwork and see Dr R and possibly get to talk to Rhuematology. Dr R is concerned once again that Lil has built antibodies to the Humira which as you know is a major problem for us. There is talk (rumors really) of putting her back on steroids and maybe switching her to an injectable methotrexate at a higher dose which I can't even write about without feeling bile rise in my throat. All of this talk (talk, just talk) makes Dr R and I  very uncomfortable. As he very succinctly put it, we are treating her but we have no idea for what. As you can imagine, putting these drugs into my beautiful little baby girl when I have no idea why but I know full well the awful risks involved does not make me want to tiptoe through the tulips either. But I also cannot watch her suffer anymore. I will know more after our appointment tomorrow. 

You will have to excuse the raw nature of this post and the lack of editing. I am not going to have time to get to my computer as my instincts tell me my bed this evening will once again be the armchair in Lil's room. Thank you for listening dear friends and supporters. So many of you ask what you can do to help. I have to be honest and say that when an anonymous

box of pediasure shows up on our doorstep, I cry. And when you come to see me at the bar and leave a nice tip it is so appreciated. But knowing how many of you out there read this blog regularly, many of you I have never even met, that just simply overwhelms me. All of it gives me strength. Thank you.