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.