Here I go on another rambling. Today I really need this blog. I need to be able to write out my thoughts, and right now frustrations, because I can't seem to communicate them very well, even to myself. These posts probably aren't grammatically correct, but I do try...I promise.
I have a beautiful, happy, seemingly wonderful child. She is pleasant almost all of the time and can entertain herself for long periods of time and even sleeps 12-13 hours at night...and doesn't cry in the morning to be picked up. She never gets sick or requires me to entertain her. She is a perfect child in many respects.
However, she has an injury to her brain that causes so many problems in our daily lives. She can't sit up, she can't "toddle" she can't even feed herself. She laughs as if nothing every bothers her...in fact she's squealing with delight as I type. She can spit up all over herself and me...and not bat an eye...she usually laughs. My sweet child has been poked and prodded her entire 10 months of life...and has been physically forced to do things her body doesn't voluntarily do twice a week during therapy...and never gets mad at either therapist. She has had scans, probes, biopsies, tubes, and studies...and never complains. I have learned so much from her.
And yet I am so frustrated. Why does she need surgery? Why can't doctor act like every child is a critical case...because to the parents it's the ONLY case? Why can't I get more direct answers, and timely answers, on my daughters ability to swallow...without choking? Who do I need to see...and is there any way I can see them sooner rather than later? These, and many more, are the questions I face this week. Joe and I have the ability to make the decision on whether Ella has the surgery next week to "tube" her and I'm not 100% sure of anything.
On top of the feeding/swallowing issues I am faced with the future of a child with physical limitations. Ella will be a year old in less than 1.5 months and she is still at a 4 month level. I am afraid. I am praying daily for that fear, but I'm not above admitting it.
I was talking to my friend Becky yesterday and I was reminded of a feeling I have. I can't remember if I've ever expressed it before...but I feel a since of loss. I have often felt that I went into the hospital on May 9th and delivered a very healthy child...and then ended up leaving the hospital with a child who was facing death in the face. I feel like my healthy child was taken and I still struggle to understand why I was given a sick child. I know when you see Ella she looks happy. She doesn't look sick. It helps that she doesn't have any devices, but she will soon enough.
I feel alone. Not alone in life, because I have Joe (who I could write an entire entry about how WONDERFUL he is) but alone in being Ella's mother. I never realized that just because you are a mom doesn't mean that any one else will ever understand your day. There is no truth in the thought that moms sit around and watch their kids and eat all day...okay, I eat a good deal, but there is SO MUCH MORE to my day!! There are also a ton of decisions to make. Let the kid cry or make them nap? Call the doctor or don't? Go for a walk or let them play on the floor? Sounds silly, but sometimes you feel like their whole future relies on some of these choices.
Okay, that's my rant for the day.