"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Friday, February 6, 2009

The Fighter

Now I ask you, is this the face of an innocent girl?

Even before Marissa was born she was called "Fighter". I have found this is not unique in the special needs world. All of our kiddos who were born struggling to live survived, in part, because of their fighting spirit. They continue to live through many trials and tribulations because of that same fighting spirit.  Every day I thank God for her fighter's spirit.  It is what has helped keep her here with us.  

But, some days, I just wish she would not fight so hard.  Fight me.  Really hard.  All the time.  On everything.

Marissa is a very strong willed person (I have no idea where she gets that trait from!!  ;)  It seems that every time I have to do something to her or for her, she fights me.  Every time.  Well, at least 98% of the time.  O.K., maybe 95%.

I am so tired of having to fight with her to accomplish EVERYTHING.  Diaper changes.  Getting dressed.  Giving her medicine.  Hooking her up to or unhooking her from her machines at night and nap time.  Suctioning her.  Giving her a bath.  Changing her trach ties.  Doing her trach and g-tube cares.  Putting lotion on.  Getting her in her chair for a feeding.  And on and on and on.

I do try to let her know ahead of time what I am about to do so as to not make her feel like she is ambushed and forced to do something she does not want to do.  I involve her.  I ask her to help me get her diaper and her clothes.  I understand that she is her own person with her own free will.  But I still have to do these things and she ultimately does not have a choice.

I also try to put myself in her shoes.  I understand that suctioning, changing ties and doing cares are not pleasant for her, and are sometimes even uncomfortable for her.  I even considered that putting lotion on might trigger her sensory issues, however she does like to put it on if she can do it herself and get really messy.  But the mundane normal stuff?  Diaper changes (when no rash is involved), getting dressed, medicine that she does not even have to taste or swallow (goes directly in her g-tube), bath time?  I just wonder why she feels the need to fight me on EVERYTHING ALL THE TIME!  I am exhausted everyday before I can even get in the shower because she and I have had at least four battles already.

I know that I can probably chalk most of this behavior up to the "normal" toddler, terrible two having, independence asserting nature of kids her age.  I am just weary.  I am tired of fighting.  And I'm hormonal.  Please excuse me for a moment while I go make myself some life affirming, energy giving coffee.

...Ahhh, that's better.  Now I have more energy.  Time to change Marissa's diaper.  Time to fight again.  Pray for us.

My little fighter girl and her "game face"


Tara said...

How did your coffee treat you this morning? :) I can only empathize with you on the struggles Bill, I fight with Alyssa every day, but in such a different capacity and that wears me out. You're always in our thoughts and prayers and remember that God will always give you the strength to make it through the day......even if you're thinking about running away from home....:)

Love you!


Elizabeth said...

Your right, it can be chalked up to her being a normal little girl, which is a good but exhausting thing. It will get better soon and she will not fight with you on everything, and then she will become a teenager and it starts all over again. I know you are tired, but this too shall pass. Keep a stiff upper lip and maybe have a date night this weekend.

Lots of Love

Hope said...

Awe, Alicia, I'm sorry you're weary. If Marissa just layed there and allowed you to do those things, would you worry? Would she still be that spunky little girl that makes you laugh on a daily basis? I think you'd miss it. She is a girl, so maybe she's a little bit diva-ish. She's your melodramtic princess in the throes of her very normal terrible twos! As far as where she gets her strong will from.......look in a mirror! Any Mom that handles what you do with such an amazing attitude has to be strong willed. It's a good thing. Have a great weekend!

Anonymous said...

Well.....you know she is related to ME so I would like to say that I think she IS innocent! In every stinken way! But if you need me to get on the phone and be the "auntie no-fun" that I am here in junction, I can do that! I love you all so much and I need to make a visit there soon cause I need me some Miss Riss lovin!! :)
-Aunt Taters

I was inspired by my sons nurse, so I became a nurse. I'm momma to 4 boys one with RTS, one with T1D. I get my therapy and strength through crossfit and take each day as it comes. said...

Im so glad you have a fighting spirit! Maybe give your mom a break every now and then, but never stop fighting!

Nana and PaPa said...

Oh Alicia....I understand and sympathize AND empathize. You were too young to understand much, but Brian was our TOTAL fighter! He too had his moments when he could be so sweet and loving and cooperative AND funny!...but then..the other shoe (or the devil-possessed side) would rear it's ugly head and World War 3, 4 and 5 broke out over EVERYTHING!! lol But...as you know since then...all of us and Brian got through it. This too shall pass....for you...even if it doesn't seem like it ever will...take one little battle at a time.
Nana & PaPa

Faith said...

What a perfect picture for this post! Faith is the same way....it's getitng harder as she gets stronger...forget diaper changes...and changing trach ties IS WW3! And the parental abuse is just uncalled for. It's so hard to discipline these kinds of kids too, especially when they don't understand. Faith kicks and hits because it's the only way she has to communicate... try explaining that one to the preschool teacher, huh?

Ok I'm getting wordy...I'll stop!
Have a good weekend!
Jen :)

Ann said...

Marissa is a cutie! I love her faces :-) I'm sure you are weary. It's tough being the parent of a toddler, let alone the parent of a toddler with medical needs. Just remember, Marissa's fiestiness will serve her well. Wish I could meet you for a cup of java.


Rene said...

Thank you so much for your awesome comment on my blog today. You've made my day! I look forward to getting to know you and Marissa through your blog.


Momof5 said...

Hmmmmm....she may have gotten the stubborness from you but I know where you got it from....you see I know your mom pretty well. Sorry Joyce! LY! Alicia, I'm sure that life never stops to give you a break, but lean on that everlasting love of God and he will strengthen you! Coffee works too! I wish I was close enough to hug you tight!