Jessi-bugs not looking forward to therapy in her wheelchair'

Where to start? My name is Jen. I am the stay at home Mom to four children, well teenagers now. Jessi 'Bugs' is my special child. About four months before Bugs was born, I was told that something was wrong on the ultrasound. Jessi is a twin to Megan and there was a huge difference between their head sizes. So starts our "nightmare".

By the time it was over Jessi was only to live twenty-four hours as they thought she had no brain due to all the fluid in her head. She also had a heart problem that would require immediate surgery (which they didn't do until she was six months old) and there was just no hope. So six weeks before they were due to be born, I had a C-section knowing my little girl was going to be born a monster and then die.

Anyway, it's been 13 years 3 months, 7 surgeries and a lot of scary moments (life flights and resuscitations) and a whole lot of joy and tears since. Now, Bugs is headed for her third open heart to place a mechanical valve as hers is leaking, and the part of the heart where they need to hook it is hardening. The other kids have been wonderful although it has been very hard on them as Grandma and I had to take turns raising them the first years of their lives while we were fighting to keep Bugs around. They are all now teenagers and doing very well. Bugs is up to about a year and a half in abilities now, depending on her day. She is bright eyed and stubborn and gives the most wonderful hugs!! It has been a stressful, beautiful, miracle filled ride so far and I hope and pray it continues to be so.