Thank you everyone for all your support. I am grateful not only for myself but as well for my daughter! I am sure after reading Amanda's last blog many of you realize and know how each moment is precious. This is why we made a choice to live life and follow our dreams.
For many years it was very difficult raising my daughters. What got me through was my faith in God, love, and support from family and friends. Being 9 months pregnant and told your 3 and half year old daughter may end up in a wheel chair was devastating. During Amanda's three weeks of hospitalization and never leaving her side, my biggest challenge was to keep myself together. It was a nightmare having to see Amanda being poked by many needles everyday, running tests and constantly switching medication until they were able to reach a diagnosis. She was getting worse by the day; not walking, not being able to speak properly or even feed herself because her arms and jaw were not functioning.
The time came when we were sent home to wait for the results. Meanwhile, my second daughter Alicia, was ready to join the family and meet us. I gave birth to her July 21, 1993, and she was so beautiful.
It was a happy day until the rheumatologist called with Amanda's results diagnosing her with Junior rheumatoid Arthritis. Medication, physiotherapy, occupational therapy and weekly hospital visits were our lives for the next four years.
Bringing home Alicia and having to cope with Amanda's illness was very difficult but I knew I had to do it. I got to work and started researching the disease making sure I followed through with all the tools I needed to make sure Amanda would not end up disabled.
Ten days after Alicia's birth we noticed her breathing was off. We rushed her to the Children's Hospital and they took her right away for evaluation. Later that day the doctor's diagnosed Alicia with Coartation Aorta. At just 10 days old my precious baby was having open heart surgery. She spent two weeks in the hospital.
So at this moment, my 24 year old self had to deal with 2 very sick children fighting to survive and overcome. I was torn apart not knowing how to share my time between my two sick children. Do I stay and sleep at the hospital with my new born,where she is fighting to live or home with Amanda where she needed constant therapy and aid. It was difficult but I managed. I mean what choice do yo you really have. You fight, you fight for your kids because they are too small to even know what is happening to them. So that is what my life became for the next few years, war with life. Not only making sure my children survived but that I did too! There was no time to think about what was actually happening to my family but it catches up. It all does, dealing with situations is not just about physical survival but emotional too, and that is the hardest part. That is what I’m still learning all these years later!