My decision was no matter how long Mighty Z lived, she was going to be treated like a child.You think that’s an obvious choice, but it’s not because it’s really very hard to treat Mighty Z like a child. I have to push myself down to allow my child to be a child. I have been so scared. Scared that by letting Mighty Z do and be, she could die, which is true
When Mighty Z was born I vowed that I would always treat her like a child and never a glass doll.As with many vows it is easy to say in the beginning and harder to keep when the situations arise.
When a child is trached and they need to be 24 hours on a vent, doctors like to also put in mickey buttons ( feeding tubes) many times for no real reason, but the child has a trach. I decided not to do a mickey button, but instead to teach Mighty Z to suck a bottle. Mighty Z had been intubated for 4 months and didnt know how to suck but with lots of tough love she was able to do it beautifully.
Only until we brought her home at 6months old did my first test of treating Mighty Z like a child really come up. You have to understand at that point Mighty Z was vented 24 hours a day and we were told that was how her life would always be. But I also knew it was time that she started holding her own bottle. I knew that she could hold her bottle physically, but still my mothering instinct was "poor little one". I had to push myself down give Mighty Z the bottle and walk away. It was so so hard, but I knew it must be done. After throwing a fit Mighty Z realized she was hungry grabbed the bottle and ate greedily.
After a couple of years I got into the swing of things and always held firm to "treating Mighty Z like a child."
Until it was time for her to go to head start or as some states call it PEP. At this point Mighty Z still had a trach although she was now only vented at night and when sick. Still it was way to much for me to send her to school by herself for three hours a day. I did understand that there would be a nurse, but how could some school nurse (sorry for that school nurses) who didn't really understand Mighty Z's disease be able to help her. How could Mighty Z survive three hours a day with out me there making sure she was fine? Once again the words that I so often said came looming back into my mind. I had to treat Mighty Z like a child. So my compromise with myself was to sit in the parking lot until she got out. That lasted about a month, and then I was able to talk myself into going back home while she was in school (my house was only a mile away) I look back and think to myself how silly I was, but at the time I was nauseated just by the thought of it.
When Mighty Z was 3 we had breathing pacers placed inside of her and at 4 we had the trach removed. As with all parents I was beyond thrilled to get the trach out. Until we came home from the hospital and I put her to bed. All the sudden I have thoughts of what if the pacers don't work tonight? What if she goes into respiratory arrest? How am I going to bag her if I have no TRACH??
The very next day I called her doctor and said it was urgent that I see him. I brought Mighty Z and I cried, I begged, and I pleaded that he put the trach back in. However the doctor told me the same words I had said to myself "I had to treat her like a child". He went on to say that mighty Z was fine with out a trach and that these feelings were about me and not about Mighty Z.
After 11 years I still have to ask myself "Is this about me or about Mighty Z" "Am I treating her like a child" and more times then I like to admit it is about me. I still have to push myself down to allow her to be a child. I have been so scared. Scared that by letting Mighty Z do and be, she could die, which is true