Friday, March 16, 2012

The man that saved my daugthers life...

Eleven years ago on January 22, 2001, Mighty Z was born. She was born around five O'clock PM. As with any birth of a new child we were so excited to see Mighty Z's little face. She came out all was well she scored a nine and a half on her abgar score and was handed to me to hold. The old saying hind sight is 20/20 is so very true. Right after delivery Mighty Z kept wanting to fall asleep she didn't want to cry just sleep, that was clue #1. The nurses kept saying over and over wake her up make her cry. It was very hard to do that she just wanted to sleep clue #2. Once they took Mighty Z to the nursery and cleaned her up and did all the after birth stuff while I was being tended to. Mighty Z kept wanting to sleep in the nursery in fact the nurse would come over see that she turned gray poke her Mighty Z would pink up and the nurse would walk away, only to return and poke her again. Finally after four hours the Pediatricians sent our Mighty Z to the NICU. When Mighty Z went up to the NICU and we met our new doctor (Dr. Siddiqui) we were told she had just a little infection not to worry she would be home in 7-14 and this would just be a bad dream. I remember sitting in the hall way as the doctors did their rounds and looking at the other parents dead eyed and non responsive to anyone else. I thought to myself good thing I don't have to be here long with these people who look like they have lost all hope. Boy was I ever wrong. After fourteen days Dr. Siddiqui sat down with us and said many words you never want to hear about your baby. He said that he didn't know what was wrong Mighty Z was a perfectly healthy baby but she just couldn't breathe on her own there was no reason she shouldn't be able to. The only thing that Dr. Siddiqui said that she could possibly have was a very rare disease, he said that we would be more likely to win the lotto 3 times in a row then to have this disease. Dr. Siddiqui told me that a month before Mighty Z was he had gone home to Boston and one of his doctor friends had shown him a baby with this disease and it reminded him of Mighty Z. Sometimes we think life is full of coincidences but I know that because of Dr. Siddiqui Mighty Z  has not just lived she has thrived. Dr. Siddiqui spent no time messing around he immediately started researching and calling specialest getting feedback from not only Dr. Keens at CHLA, but also Dr. Weese-mayer in Chicago.  Dr Siddiqui was not just listening to these other doctors he was also listening to me he was making sure that although my daughter would live on a ventilator the rest of her life that I was part of the team. Even some of my most crazy thoughts to help Mighty Z was listen too and some even tried. Dr. Siddiqui held my hand, cried with me, loved my family and did all in his power not only to save my Mighty Z's life but also given her a life. To this day Mighty Z has been in 10 different hospitals and every specialist have said the same thing"Dr. Siddiqui saved your daughters life."01 02 12

Sunday, March 11, 2012

when I finally accepted that my child was a special needs child

As my first blog I have ever written one must first realize that I am a horrible speller. My grammar and punctuation leaves a lot to be desired. If you are still reading this I applaud you for trying to make since of what I write.. So my title is "when I finally accepted that my child was a special needs child" well the answer is this I don't think any parent can really come to grips with truly admitting to their self that their child is completely special needs. It has come to me after eleven years that I have slowly accepted things not that I was in denial just well it is hard to admit to yourself that he/she is. Right off the bat I did accept that she needed machines to breathe for her, but give me a break that was a little obvious. I did and still believe that God can and will heal her, but now I am okay with the way life has worked out for us as a family. When Might Z was born I grieved for the healthy child I had lost, but now I have found the beauty in the child that was given to me and I no longer grieve for that healthy child. That being said I still look at other children her age and see with my no longer rose colored glasses what my Mighty Z will never be able to do. Do I cry you ask? why of course I do . I also see what she has accomplished and to that she is my hero. When Mighty Z was born we were told she wouldn't live, never talk, never eat, never walk, never go to school,never breathe off her machines, never have any quality of life. Mighty Z does all those things and so much more.. Was it hard getting her to do all those things? you have no idea Mighty Z could teach a mule to be stubborn but she does them and beautifully. I have also found that you can only accept so many things at a time the breathing was easy the others have been heart breaking. So after eleven years I am still learning to accept my special needs child as special needs.. 01 02 12