Life is crazy, that's the simple version. The complicated version is we have been in and out of doctors appointments. Non stop therapy sessions. While some negatives have happened over all it's been positive.
I'm thinking about a lot of the choices I make in regards to Aaliyah and I can honestly say I don't regret them. I do the research, I talk to the parents and I listen to the doctors. I tell Robert and he listens. He tells me what he thinks. Almost every appointment for the last year since Rob switched jobs my mom or dad are with me. They help me through the thought process. In the end I make the choice because I'm the one that is there most of the time. Rob has trust in what I'm feeling and seeing. As do my parents.
One of the major things was the feeding tube. We never let it get to the point of being an emergency situation. We felt very strongly in getting it before it was necessary. Before she lost weight, before she stopped gaining weight, before she ended up hospitalized, and we were right. Because of that she has had only one hospitalization because of weight and truth be told I think that seizures were present but not visible. She has had at least two periods of avoiding the hospital thanks to that tube. Thanks to it we can get the nasty meds she needs to get through the day. It's a god send yes having my my child go through surgery put under and cut open was a blessing.
People see a glimpse of what I am dealing with. Not the whole of it. They see what I put out on my "lawn". They don't see the 100s of little things I deal with. They don't see the ups and downs. They don't see what my daughter goes through. The sleeping after some seizures is hard, the daze after some are hard. Her breaking down crying after is the what breaks me.
Losing her sister, her twin, her other half hurts. How could it not? What they don't understand is that what cost us Natalia is the cause of Aaliyahs problems. I'm angry and always will be. I'm in pain and always will be. Yes at times it dominates me but it does not and will not control my life. I will give it the reigns at times because I refuse to bottle it up. I have the right to feel that way. How I handle it is my business.
The choices I make for our daughter aren't just what she wears. They determine her fate, her life, her health and most importantly the quality of all three. So yes it may seem I'm being negative to some but those who truly know me, they know that I have those moments and than I move forward with fire in my blood. I don't give up, I don't give in because that is not who I am.
Well that's enough for now. I will try and get another blog up this week so that I can update on Melody.
