My sweet child of mine as you are growing and getting stronger and making me feel huge at this moment, but knowing that you are safely tucked into the womb, makes my heart feel full! I’m planning all these huge dreams what you will wear to school, proms, graduation, college, your wedding and so much more…. I was knocked off that pedestal at 32 weeks pregnant, that’s when I learned that things could be challenging.
When you were born you were perfect, 10 toes 10 fingers and a beautiful little gem. At 3 months we noticed that she had no interest in toys or even focusing on us when we gave her a bottle. So we saw a pediatric ophthalmologist, he confirmed our concerns. She have little to no vision. Ok, at that moment our dreams changed and we looked into the blind, we can do this new territory of blindness so we started pooling in resources of what we can do to help this 4 month old.
Little did we know that in just a few short months our lives would change again. We had a MRI done of her brain to see what were exactly looking at. Well let’s say this granted us a 3 night stay to see many new doctors and get us lined up for follow up appointments because we will need them in the future! Early on was brought into the home because our beautiful child was delayed. No talking, no sitting, no crawling, just LICKING.
At this time was when we were introduced to CSHCS. We now had another person in our corner that could help navigate the system and answer questions and help. They helped with equipment needs and was there for support for us as parents. They were kind, and gentle without judgment. When I had questions about why a medicine was not covered they helped navigate the way. We learned what it was like to care for a medically complex child and what she was going to need in the future.
My child (Leaigha) was doing well and hitting some milestones but as she continued to grow she started to regress and get worse. She lost some things that she would do when she was a baby. She started developing seizures that were not controlled at all, many nights in the hospital, a few surgeries. She was 52 pounds of dead weight, that we carried around the house, up and down stairs that were beginning to be unsafe. Dad and I talked about rearranging our home to make a master bedroom and a room for Lil Miss downstairs.
She went to preschool, only for a few months. But she rode a bus. Her cousin that is just a few months older than Leaigha gained a beautiful bond. He brought her teddy bear to the hospital and layed in bed and talked to her when she was not feeling well. He took her roller skating for his birthday. She loved it! Little did we know that one day in October when we put her on the bus would be her last ride. She had a massive seizure at school and was unresponsive. CPR for 49 minutes, a helicopter ride to Motts Children’s Hospital to the PICU. Our Leaigha was 98% brain dead. There was no hope for our girl.
So we made the choice to GIFT her organs. Many of tears shed but when they put you in a room to explain what the CT scan showed we knew before any words were shed. Our Leaigha has gained her wings almost. The gift of life was called and Leaigha was blessed enough to be a organ donor. We had amazing nurses that walked the walk with us. Seen her last breath, her last tear shed and got to see them beautiful GREY eyes.
Leaigha passed 18 hours after her great Grandma, but was able to give someone a chance to be normal. A 73 Year old Lady got her Kidneys and a 1 year old got her heart valves. So My Leaigha saved two lives even after life! Her cousin asks all the time if he can go give Leaigha something at her grave. So we go, and we go quite often. Leaigha may not be here physically but she is here in spirit.
We get our signs from her when we need them, and Leaigha lives on through the gift of life. We are still in touch today with the recipients of her organs and her nurses. We also found out that little Miss Leaigha has hand-picked a soul for one of her favorite nurses that has a due date of 7/27/18 just one month and 10 days after Leaigha would be 7. Leaigha has been gone from the physical world for 3 years now, but she brought so much to us, a great life, challenges, good friends and a blessed future. We were blessed to have the opportunity to care for such a creative child, even though she was non-verbal, she taught us the joys of life and to navigate around challenges, but taught us to love unconditionally no matter what.