"Good morning" I say as I go into my daughters room to wake her. She screams "GO AWAY!" I go in about 5 minutes later and give her medication. One to prevent seizures and another that helps her not to be so anxious. On a good day in about 15 minutes she will come out looking for breakfast. I have to turn off food so I can go wash her...because you see she usually has a BM during the night, and she itches her bottom because of discomfort. Her finger nails and hands have to be cleaned before she eats. She doesn't like this at all. I get her in the shower but usually she does not want her shirt off yet. Picking my battles... shoot let her shirt get wet. I put shampoo on my hand than on her hair as we sing wash wash wash your hair...I say close your eyes (she doesn't) so she gets upset when the shampoo runs into her eyes. we do the same song and dance for rinsing her hair, than on to the wash your body song. some times she likes to stand in the shower for a good 10 minutes she seems to love the water on her back. She sways side to side with her eyes closed. (wish she could transfer that skill to shampoo time) I finally say out? want out? she says yes. now we sing dry dry dry your hair.....tummy...bottom....well you get the picture. shower time leaves me drenched. time to get dressed. I have to help her get dressed every day...I start it out and she finishes. We call this minimal support. it can be pretty entertaining sometimes. I will put her pants on the bottom of her legs and she will not pull them up she will just walk around like that not even noticing. That's our Megan Anna Banana. Finally its time to eat and boy is she hungry. I have to remind her to use her fork or spoon about every 3 bites. Shes come a long way. After she eats she clears her plate and says look at my face. I wash her face and hands and get on with my chores. Most of the day she paces through the house and follows me around. I use this to have her help me with house work. When she is home she is with me almost the entire day. She doesn't do well if I shut a door for privacy. I'm used to this day in and day out.
Some time after Megans diagnoses I was hit with the reality that she may never move out. I understood that her level of care would be higher than all my other children. I laid down plans of going to work or school. You know what? I never felt like she took my life away from me. I have heard others refer to their situations this way, and my heart breaks for them. The bible says no greater love has no one than this that he should lay down his life for his friends. What greater purpose could one have than to nurture and raise a child of God. Megan has not taken any thing from me. She has given me great purpose and I haven't stopped living, After all this is my life.
