Fighting Against The Odds with Mixed Emotions
You see happy "normal" families and families with children who have disabilities. These families seem to have such an amazingly positive attitude that make you wonder if there's something wrong with you when you don't feel that way. It's easy to be angry, and that's okay.
My daughter, Lily, was ripped out of my body at 23 weeks with no warning. I watched her fight for every breath, even when her breathing was controlled by a ventilator. Her lungs collapsed and her kidney's failed while she was poked and prodded with IVs and PICC lines. Lily's bone marrow was injected with needles in hopes it would kick start her immune system. Worst of all, she vomitted so much blood resulting with 60 transfusions in one week.
Lily finally made it out of the hospital. I maintained a happy appearance on the outside, but felt horrible on the inside. I felt like I was torturing my child. I was jealous and angry, but then she came home and I felt complete. For two years, everything was perfect. We found Lily an excellent specialist and therapist. We couldn't hear her voice because she lived with a tracheostomy for over a year. Finally it was finally removed, and I was happy because we knew she was on the right path.
Our New Normal With Chronic Kidney Disease
We then found out she had Chronic Kidney Disease, and eventually her kidneys would fail. This would require a transplant. There's nothing worse than knowing you can't do anything to help your child. It was difficult not to focus on Lily being cut open. My anger came back in full force. I cried, screamed, and eventually broke. Suddenly, our semi-normal days changed to searching for the perfect diet to keep her kidneys going as long as possible. Our gymnastic days ended, park days were limited, and jumping around and falling like a normal toddler also ended. Lily started using a feeding tube for many hours at a time while playing on her tablet. This became safe.
Through it all, my little has remained happy. Lily now laughs and runs around the hospital. IVs and oxygen tubes are connected to her, she sits through asthma treatments and feedings which take a large chunk out of her time. Lily also snuggles, gives kisses, and genuinely says she loves us. I've never seen as much love as the love my Lily shows every day. She's amazing.
I slowly try to remain positive each and every day because if my daughter can smile and love, then so can I!