Sunday, November 18, 2012

They Lied

Way back in February, when we started on our JRA adventure and the drug cocktail that comes with it, the doctors and nurses were all very reassuring.

"Giving the shots is hard in the beginning, but it gets easier over time."

"Just wait a few months and it will be routine."

All the promises of easier and better have not come true.  Even as my own skill at injections has improved, it has gotten harder and harder to take.

The smell of the numbing cream makes both #4 and me nauseous.  The moment I touch her on shot night she begins to whimper.  She knows by now that it is going to hurt, that the methotrexate is going to burn, that she is going have bruises from each shot which last for weeks, and that tomorrow morning she is going to feel like puking well into the afternoon.  I can no longer comfort her with platitudes of "it's just a pinch" or "the medicine will make it not hurt."  We both know the truth of it, and there are no more lies I can tell either of us to make it palatable.

The truth is that one night a week I have to hurt my baby for her own good.

It's a contradiction that strikes at the very heart of my vocation.  It is my job to keep her safe and free from harm to the very best of my ability, which is what makes her weekly shots anathema to both of us.

I have told myself the tale that I am doing this to keep her healthy and that this is the reason she is doing so well today.  It feels like a lie, no matter how true it may be.  I draw up that lemon yellow liquid every Sunday evening in the full knowledge that she will scream or groan as she claws at her leg when it goes in. These weekly injections have sent her to her father's arms for comfort as I have become the source of pain.  I am no longer the solace she seeks, I am the misery she turns away from, burying her tear-streaked face against his neck.

I don't know how they could have said it nine months ago in a way I would have understood...the depression, the guilt, the anger at this disease...the desire to just stop hurting her...

They lied to me nine months ago when they told me I'd get used to this...this will never be will always be hurting her and it will always feel wrong.


cathmom5 said...

I know exactly what you mean. I've been through it--not JRA but juvenile diabetes and chronic excema, allergies, and asthma. They always tell you it gets easier, it only burns for awhile, it only hurts for a few minutes. All are torture to a child. Lots of prayers for the heaviness of your heart. Try not to feel guilty.

Tricia said...

My daughter underwent facial reconstruction starting at 22 months.
Her father held her captive while I had to inject 3 tissue expanders in her head, face, and neck every week for 3 months. She had two 3 month rounds of this. 10 grueling surgeries. It was the worst thing for the people who were supposed to protect her were torturing her. She was too young to understand anything
other than her parents were hurting her. Thanks be to God she seems to be a happy 12 year old. But I will never forget. I will pray for your family.

Better Than Eden said...

This breaks my heart. I am so so sorry. I can't even imagine how awful that is for you. For a while we had to give our son suppositories for Hirschsprung's Disease and even that much smaller thing was so difficult. Prayers.

Maurisa said...

So sorry! I can't even imagine!

Considerer said...

Keep praying and keep going at it. Only imagine how much worse it would be if you stood aside and let the condition damage her. I hope one day she'll realise what a brave and dedicated Mum she has.

Michele said...

This breaks my heart, Mama. Sendign you love and feeling for you all.

allthemasons said...

I can only imagine the pain that you and your daughter (heck your whole family) are enduring right. My prayers for you all!

Anonymous said...

Of course they lied. I've been lied to many times both as a child and as an adult, and like a stupid person I believe those lies. I just got back from getting a mammogram, and I'm extra cranky from the pain and torture of that machine.


Anonymous said...

I am so sorry. As an adult, my Dh had to give me shots, and I despised it. I still can't stand it when Dr's want me to give myself shots. I can only imagine being a parent giving them to a child. I feel like it's not fair... like the nurse should offer to do it instead!

Lena - I had my first mammogram last year, and I was completely unprepared for the absolute torture - yes torture - I experienced. And the technician was so cold and uncaring. Sigh.

Lena said...

Did you say the numbing cream burns? Is there a different kind? I hope that out there in the world wide web, there is some helpful trick or tip to make the shots a teeny bit more tolerable. As an adult I can choose or not choose to receive medical care and diagnostic tests, and things still hurt. A child can't choose, and I think that adds to the pain. Of course, you are doing what you need to do for her health and well being. Well, I hope something new comes down the medical pipeline to make this less terrible for your daughter.

Lena (again)

Houston (aka) Tots said...

I wish I could comfort you and your family in some way. Please know that I will pray for you. For your daughter and the rest of your family.

I wish I could understand why things are the way they are. Your daughter doesn't understand now and you feel nothing but guilt. I can only imagine how you feel. But you are her protector, you are her champion and you are doing the hard things for her now that she doesn't understand now, but one day will.

You are a good mother. Not just because you love you daughter, but because you love your daughter enough to do what isn't easy to make sure she is OK.

God be with you my sister.

Maureen said...

Poor little thing.... it's a lot to get used to. My prayers for both you and #4.