sing it loud so I can hear you.

Our wedding song was Better Together by Jack Johnson.

The Wood Song by the Indigo Girls ties my Blanket Girls...my best friends and me together.

I was listening to Bob Marley's Acoustical Medley the moment when my mother slipped away.

These are the songs I hear in my head everyday of my life. They are the songs I always come back to; the ones I am always humming.

When I am not humming "Give me back that fillet of fish, give me that fish..." Seriously, someone help me!

My point.

From the moment I knew Riley was growing inside me I began to sing to her. Everyday of my pregnancy and every day of the last 15 months. They are varied fun tunes, theme songs or the aforementioned commercial.

Give me back that smelly dipe, give me that dipe....

The first night in the hospital I held her sleeping body close to me. I found the words to a song I have always known, and knew in that moment that it would always be hers. That night, and every night after I have sung her The Beatles, I Will.

I nursed her and rocked her. I would sing it and then hum it before finally settling her peacefully in her crib.

While I am no longer nursing her I am still singing to her...its our bedtime ritual.

But I wonder for how long. She grows restless for more books or for her bed. It is crystal clear to me in these moments how quickly she is growing and changing. How fast she makes up her own mind.

Sometimes I worry that this song will fall away one day to be one I only sing to myself.

But them I remember the times she has heard it on the radio and has raced towards me. "Mamamamamamama..." Shes climbed into my lap and snuggled for a minute before racing back away.

I know little moments like that will be a fleeting gift as she grows. But she will always be mine, I will always remember and I promise I will always sing for her and to her.

I will.

because babies...

...babies turn into toddlers.

And toddlers are busy. And very, very strange.

How many Elmos do you see?

it could be worse.

That's my general attitude about my health.

People ask me how I am...my answer; It could be worse.

It's the first thing I said when I was diagnosed 3 years ago. I don't have cancer right? It could be worse.

I couldn't feel my right leg, I couldn't turn my head and walk at the same time without falling over.

It could be worse.

Then I got better, so much better...and then pregnant, and then 100% better. And when people asked me how I was I said "I've been worse".

So now that disease begins to creep back into my body, now that it starts to win the occasional battle I remind myself. It could be worse, it has been worse and if it's up to me it's not going to get any worse then it is right now.

I have gone to bed everyday for the last few weeks saying the same thing. 3 years ago you could stick a needle in my right ankle and I wouldn't have felt it. Today, that is not the case and I think I would kick you if you tried.

So I lay my head on my pillow and repeat it again and again and I concentrate on my left eye. In the morning maybe my vision wont be as blurry. A week from now maybe I won't be getting headaches anymore from straining to see. 3 years from now I will look back at this time in my disease and remember.

It's been worse.

for the benefit of your search engine.

I started back on my MS medication, Rebif about a month ago.

Originally I avoided returning to my thrice weekly injections because I thought it would mean I had to stop breast feeding (and I was like totally La Leche crazy about breast feeding). For a year I risked my own health to continue nursing.

When my doctors told me I no longer had a choice I was devastated. Nursing was so second nature, so much a part of my relationship with my child that I couldn't, wouldn't walk away. I became my own advocate. I started researching and talking and investigating.

At the end of a month I was privy to information that is not so easy to come by. And for the benefit of any other woman with MS who needs the answers to the same questions I had, I say wrap your Google keywords around this.

Multiple Sclerosis, Breast Feeding, Nursing, Rebif, Interferon.

Here is what I found out.

Nursing and taking Rebif is possible. I was given information from my local lactation consultant who used a book written by a Dr. Hale. I brought this research to my doctors and the baby's doctor. They are fully supportive of the information I found.

The drug company has a blanket statement of "don't do it" because they a) have done insufficient research and b) refuse legal responsibilities. I get that. But it's not the whole story.

Dr. Hale has done studies on breast feeding mothers and this drug. He has tested the milk.

Rebif is an Interferon. A protein naturally produced in the human body.

On a molecular level it is too large to pass into breast milk in measurable amounts.

Even if it did, the reason why it's an injectable is because the GI track of the human body destroys it.

Call me crazy but that was good enough for me and I am still nursing. Granted Riley is 15 months old and can go days without wanting it, but if she asks it's there.

I only wish I had taken hold of the situation sooner. Because while medication is no cure for MS, it can certainly slow its progression....and that's what it has been doing for the last year. Progressing.

Nursing or not nursing is a personal choice. Dealing with this disease and negotiating the options is personal. No one is going to do it for you, no one is going to make your choices.

I agonized over this decision. Even with the knowledge I have today I would still have waited 6 months before returning to the medication, but I would have been informed. Personally, I like to know all sides of a story.

then don't say anything at all.

So I haven't exactly been the best blogger of late. I checked the stamp on my last post. December 4th, gawd. Talk about being a slacker. I've been reading but I can't tell you the last time I commented.

Well ok, I can. It was like 5 minutes ago on The New Girls new news.

The thing is though I try to subscribe to the "If you can't say anything nice" theory. And lately I just haven't been up to nice.

Whats dragged me from my hole? This...

Where is Clink? Where is Clink?
Hope you're ok! Hope you're ok!
We miss your witty self We miss your witty self
Come back please Come back please
Sung to the tune of "where is thumbkin"

That was a comment from Swiggy. Too much right. So I figured I owed maybe a teeny little update to my reader(s).

Well...I'm not up for it. It's just too much right now. In the thick of it you see.

So. Something I have spent a good amount of time thinking about these last few months.

Fucking Sesame Street.

Right...so, when Riley turned one I realized that crap! I had never let this kid watch TV with the exception of Football like 24-7 for 16 weeks ; so maybe I owed her a little puppet time. I flipped on the big Sesame for the first time since I watched it as a kid.

Seriously.

This is what I have learned and I am none too happy.

Snuffalufagus is no longer invisible. WTF?

Elmo is the MC leaving poor Big Bird to sit on a door step and shake a cup for spare change just so he and Snuffy can get by one more day.

Oh and on that Elmo thing...totally baby crack. Riley is obsessed, this is her guy. So much so that when an older episode comes on when Big Bird was still top puppet, she points and whines at the TV until I make Elmo magically appear with the power of my modern day DVR.

Oscar the Grouch has a girlfriend. ummm....

Maria and Gordon NEVER age....which makes me wonder...are they perhaps puppets? Because they look just as fresh as they did in "Follow That Bird" which is the last time I remember seeing them.

The little letter and number of the day skits are EXACTLY the same as 20 years ago.

Bert and Ernie totally don't get any play and I wonder if it's because of all the rumors.

Elmo has a chick in his life called "Abby" and she is a fairy and can fly and talk to her Mommy through her wand. They are reaching here right? Or is it just me?

Regardless, Riley loves this stuff so I suffer through. I buy the merchandise and make her Elmo dance for her at bed time because it makes her laugh and laugh.

And that's what its all about right? Making them happy? Even if it means we have to buy into imaginary friends no longer being imaginary and furry little monsters who refer to themselves in the third person all the time! So maddening.

But in all fairness to said furry red monster. When Elmo goes to "ask a baby" in his little bit it makes me smile. And for a moment I see what Riley sees. The cutest friendliest furriest cat there ever was.

Because that's what she calls him. Loudly...and a lot....CAAAATTTTTTTT!!!!!!

Now...Promise. A real update and real comments and real involvement back in my blogger life...sooner then later.

twelve. II

I remember the doctor telling us that "we have a girl". I know the exact moment I heard you cry. Your first smile, your first laughter and your first word. I remember the day you first crawled away from me and when you first stood. I'm sure your many firsts to come will dim some of these memories for me. You will grow and time will move faster every year.

But for all the days and years to come the one thing I will never ever forget is the first time you looked in my eyes.

My sweet girl, happy first birthday.

twelve.

I wasn't going to write about today because I didn't want to burst into tears. Especially right now. Make-up and hair just so. I'm going to a fancy mall this afternoon and I want to look like a person, not an exhausted mommy.

But from the moment I woke up this morning I just couldn't get it out of my head. 12 years. My mother has been gone for 12 years.

For some reason I just cant wrap my head around that. It feels like I lost her yesterday.

It will always feel like yesterday.

But 12 years? It's not as profound as 10, not as emotional as 3.

No where near as devastating as 30 will be. When I will officially be the oldest she ever was.

12 seems to suggest a kind of acceptance of the years passing. A finality that only time can provide. It reminds me that no matter how much I would like to do otherwise, I measure my life in terms of years without her.

I still dream of her. Its not like it used to be though, the moment of pure elation upon seeing her; "OH! You're not dead!". Still smelling her in those foggy seconds between sleep and awake. The crushing blow of realization upon waking.

Now I feel almost a sense of trepidation upon meeting her. She's not supposed to be there, in the kitchen by the sink. This is my fathers house now. I feel as if I'm meeting an old friend and I don't know where to begin. My mind always snapping back to my father; wondering where he is.

Long before her death my mother told me that if ever one of them were to die, I should pray it was her. That for security, for safety, my brother and I needed my father.

I'm not sure if she really believed that to be true or the trauma of loosing her own father at 15 was so deeply set that she could not imagine that option for her children.

When my father was diagnosed with cancer, erm 12 years ago, I could see it in her eyes. If it was up to her, she would be the one to leave us.

Even then I saw her in my minds eye. Making a deal with God. Her bargain still rings in my head. Little more then a month from his diagnosis; she was gone.

I remember being little and finding my mother crying in her room over her father. It was ingrained in me so young to fear the loss of a parent. I don't wish that for my daughter, but how am I to avoid it? When with each passing year I take her hand to help light the candle in my mothers memory...and the next day light her birthday candle in celebration.

For now I know this, I miss my mother every day of my life.

But never more then today when I lost her.

And never more then tomorrow when I became her.