Monday, March 10, 2008
A little about me- Phoenix
My name is Phoenix. I am the devoted mother of little girl named Tru Legacy. (We call her Tru for short) She is a very special little girl, not only because she is my sole reason for being, but because she is suffering from 1p36 deletion. I hate to use the word suffering because this little girl does everything except for suffer. It has all been so slow to go and in small successes, but it has been worth every bit of heartache and all those tears. I am such an emotional wreck this week because it is the last week that Tru will be in 1st Steps. For the past year and a half Tru has had the joy of receiving therapy from the 1st Step providers to enhance the quality of her life. Little did I realize how much these people have enhanced my life. Now that Tru will be going into the school system, I feel as though I am losing my control. Since she was born I have done everything humanly possible for this little girl. When she was diagonosed with 1p36 deletion at the age of 1 and a half I was numb, and then mad. I was so pissed when I asked questions and got no answers. "How will it affect emotional?" "Will she be able to communicate?" and a thousand other ones raced through my head and leaped out of my mouth. No one seemed to listen to my concerns about Tru's emotional health. Yes, I understood with this disorder that she would not be a "normal", whatever the hell that means, little girl. I just wanted her to be blessed with the abilitly to love and the knowledge to know that she is loved. So began the battle I fight every day, KEEPING HER SAFE AND IMPROVING THE QUALITY OF HER LIFE. I try to very hard and I have come so very far with her. She has conquered walking independantly finally. I have had very little correspondence with other parents in my situation, but I know such milestones are great for all parents. Children with 1p36 deletion tend to have great difficulty with feeding, but that is not so the case with my little Tru. This child eats everything! Apples, carrots, green beans, cabbage, the list goes on and on. Not only does she eat everything, she will feed it to herself like a big girl. There have been many fights over this. Some days she will sit and scream because she doesn't want to do it herself. Other days she walks over to her chair, says "up" and starts feeding herself without any prompting from me at all. It is on those bad days that I question myself and have to wonder if I am really helping by making her do things for herself. I was always reassured by all four of Tru's therapists that I was indeed doing the right thing by enabling her to be independant. Today we seen Tru's physical and developmental therapist for the last time. It was like saying goodbye to family when they left and there were many tears shed. My tears are not only for the transition Tru is going through, but for the confidants that I am losing. These four wonderful women have come into my home once a week for what has seemed a lifetime and to know that they are never going to be dragging their toys and crafts through my door again really pains me. So it is my hope that this blog with keep us all in touch. And of course I want other parents to know they are not alone. Your child my not suffer from what Tru has, but I am here for you. I know nothing worth doing is easy. It is just hard to adjust sometimes.