Thursday, April 30, 2009

Normal? I do not think that word means what you think it means!

I was writing in response to Mckmama's post today and realized I too am settling into a whole new "normal". This normal is different than the new normal I thought I was getting used to a month ago. Here is what I wrote her;
Normal is relative. I am mom to a Downs child, a bi-polar child, 2 autistic kids, a Pfeiffers (craniofacial) child and now a BPD Lung baby.
Normal is relative. We too are learning our new normal. It consists of 24/7 Oxygen saturation monitoring, Oxygen machines and NG pumps. Oh how I long for the normal I used to have (though by many people's standards it was far from normal)

Each child always brings new challenges and unless someone has, like you and I, Sat endless hours over weeks and months with your child in a Hospital room watching them fight for their lives, they cannot understand our new respect for "normal".

The normal we long for consists of no machines to monitor or children's lives and no needing to be ready at a moments notice to live in a hospital.
The normal we want consists of children who don't listen and get into our stuff and sneak a second dessert or stuff an entire roll in their mouths!
The normal we long for does not have to carry an extra diaper bag full of medical equipment.

The good news is you will get used to it. This new normal will one day be routine and people will stare in awe as you maneuver everything and everyone and you will forget the old normal until someone points out that they "could never do all that you do" and then you will remember the old normal and realize that the new normal is not so bad and you realize that it COULD be worse. You could go back to that old normal without one of your children and you realize that the new normal with your child is MUCH better than the old normal without them...

Those of us navigating the New normal will navigate it together and be there for each other while we define our normal.

I am struggling with my new normal. My normal has been flopped around and honestly I thought my normal before was hard but this new normal is just starting to sink in. It is sooo much harder. I know or at least I hope that one day this new normal will be routine and old and I long for that day.
But now I am getting used to not feeding my baby from a bottle but from a pump and getting use to the fact that she may never be free from wires and tubes and I may never get to leave the house without that bag of medical equipment and I know that SOMEDAY it will be normal but now I wonder why. Now this new normal staring at me scares me. I do not know what to expect and I just long to be my old normal again. I have so many questions and feelings and thoughts and I don't know how to process everything. Do I give up on one child to allow more time for the others? What is this new normal? What exactly does this new normal have in store for me?
Today at mom's we were told that parenting is like being a Gardner, most of our time is spent on our knees. Perhaps it is time to hit my knees and find out where I am supposed to go and to ask for help and guidance and acceptance of this new normal.


Amy said...

I couldn't have said this better myself. Being the mom of two children with medical needs (a heart baby and a lung baby), both who spent weeks in the NICU, I have learned how to adapt quite quickly. Honestly, I don't know that things for us will ever be "normal", but each time our situation changes I know that I'll be ready to adapt to our new "normal".

Packing an extra bag with all of our meds, nebulizer, etc. has become routine for me. I do it each time we leave the house without even a second thought. Perhaps someday things will be different.

Lowcountry Mom said...

I agree with Amy......this post is extremely well-written and definitely strikes a chord with me too. And it's all relative, you know? Meaning, when I read this post I think "wow, how does she do it? That's amazing" etc.....but people say the same things to me about my Asperger's child and my severe ADHD child, both of whom were preemies and hospitalized for months, etc. To me, what I do is just normal, like you said, and just like what you live with is your version of normal even though it's super-impressive to the rest of us.

Every once in while, though, I think it's ok and maybe even healthy to pat ourselves on the back in appreciation of the big jobs we do (and yours, Danielle, is soooooo much bigger than mine).....but also ok to be sad about what our normal has become, and how far it's strayed from what it used to be or what we imagined it would be.

Thanks for sharing these insights of yours. They really speak for a lot of us out here, the "special" moms in that sense of the word. :)