Forums › User Profile: Deana G.
My StoryHarper Ruth Greengo was born to us Jan 10, 2014 after our 2 boys born in 2008 and 2012. She was so wanted, so welcomed and so adored. She was born perfect. It wasn't until her 7 month check up and a big move from California to Kansas, that her new pediatrician noticed some concerns. At 7 months old, she wasn't holding up her head, or sitting up, rolling over, or even crawling. I didn't notice as I was already taking care of a very busy 2 year old with problems of his own; I just figured everyone liked to hold her and she was perfectly content to just "hang out". After 4 months of doctor's, therapy centers, specialists, and lab tests, we finally received the devastating news that our only daughter was feared to have a lysosomic storage disorder, after finding protein in her urine. Two geneticists at Children's Mercy Hospital in Kansas City, came in together to talk with me about their findings. They told me they were not 100% sure until they sent the test via FedEx to NYC to confirm the diagnosis. I sat and listened as best as I could but my 2 year old was running around, pulling on me, and begging for my attention as I tried to listen. Nothing they were saying was sinking in at all. I called my husband on the way home after being at the hospital all day with different lab tests and specialists. I gave him the news nonchalantly, and he quickly asked if I was okay to drive. I replied of course I was and was confused by his question. I suppose at the time I had safety blinders on because I did not realize the severity of her diagnosis until I was home and looked it up on the internet. My husband new right away and together we sobbed and prayed for the best. A week later, we received the confirmation that this was her fate. Terminal at age 3. My child was not just sick, or slow, she was going to die. I had never even entertained the idea of death for her. I had already promised her my every last energy, my time, my love, my every breath. But it would not be enough. No matter how many doctors and specialist or therapists I took her to, she was going to die a slow, horrible death and nothing I could do or say could stop it. I mourned her death for a couple days after the diagnosis, then something in me around the third day snapped. She wasn't gone yet! Nothing had changed in her from 3 days ago to today; she was still my beautiful, happy, smiley baby girl. So I decided that day, that we would help her live out the rest of her short life the best way I knew how; with TONS of love, happy times, and millions of pictures and videos. We blue bubbles for her, gave her chocolate syrup and cotton candy to taste (she only ate by G-tube through her stomach), she got a bath almost daily as that was her most favorite thing. (I think she loved the weightlessness of the water) And we loved on her every waking moment. I would even sit by her crib while she slept and assemble puzzles in her room, just so she could feel me close by or smell me. My best friend and her sister put together a GoFundMe page so we didn't have to worry about the financial aspect to all of the doctor's visits, physical therapies, medicines, and machines that were needed to sustain her life. One of my old friends even raised money for our family to go to Disneyland; which turned out the to be the trip of a lifetime; a trip none of us will ever forget. Over the next year she spent a total of 4 visits in the hospital. 1 for her G-tube placement, and the other 3 were bad infections in her lungs and other organs. On the last visit in September, the hospital brought in their Hospice Team. They were preparing us for the inevitable. We took her home after she passed her infection, but new the disease had progressed too far for us to hope for longer than 6 months. The Christmas before she died, we even had the real Santa Claus come to our home in Olathe, Kansas. He had gifts for all of my children and my nephew who lived with us. At this point our Harper was in her "Red Zone" which was not healthy and needing more medicine for infections. On the morning of her death, her nurse, Cindy, was trying to bathe her and she couldn't be taken off of oxygen long enough to get her into the water. We knew it was time. My husband and I talked for long hours about the way we wanted her to be cared for. We did not want to keep her alive for us, but rather wanted her to tell us when she was tired of fighting and ready to let go. The oxygen was the only thing keeping her alive at this point and we knew that was not the way we wanted her to have to live. Her body was exhausted and she was ready. I wish we had been. But the truth is, I don't think I ever would have actually been ready. We called all of our family and those that were close by crammed themselves into her pink bedroom together. We removed the oxygen and let every one who wanted to, hold her. Then after taking her back in my arms and stroking her hair, she looked up at me and took her last breath. She died at 2:22PM on Jan 2, 2016. Harper's short life on Earth taught me to live loving life. To live worthy enough to hold her again in Heaven. I believe I will see and hold and sing to my small child once again and be able to watch her grow into a young woman. I know this to be true because of my faith and knowledge of the gospel of Jesus Christ. I try to live my life making my moments count. Meeting others who have experienced death this closely, and helping others to heal from their grief by sharing the solace that makes our human hearts break. Together, we will overcome the sadness that occurs with grief and feel the healing process as we hold each other and remember those we've lost.
Forum Role: Participant
Topics Started: 2
Replies Created: 4