Jake O’Connor Moody was born at 8:45 a.m. on September 17, 2001. He was 77 days too early and he was very small, weighing only 2 pounds 12 ounces and 15 inches long. Jake was born after three long years of desperately praying for a baby. I always told him that mommy wanted a baby so bad that Jesus decided to give her one of his most special angels and as proof there was a birth mark between his shoulder blades where his angel wings were attached.
Jake wasn’t diagnosed with SGS until he was eight months old. Even then it wasn’t a definite answer until we saw Dr. Hall in Kentucky when Jake was 18 months old. In his short life Jake had 14 surgeries, a six-month round of chemotherapy, botox injections on his feet, and physical, occupational, and speech therapy. He loved his therapy sessions, especially the occupational because it was done in the water. I know it seems like Jake had a lot of things done but all were necessary at the time. Jake had his first surgery on his actual due date. It was to place his feeding tube and fix two hernias. The surgery lasted nine hours. He had other surgeries to place a shunt in his head and he had four different surgeries due to shunt complications. He also had five surgeries due to tumors—germ cell teratomas—that formed in his abdominal areas. The last teratoma was so large it almost crushed the organs in his abdomen; it grew that large in three months. Due to the fast growth of the tumors Jake had CT scans done every three months.
My husband and I were told at one point never to give Jake chemotherapy because of the potential for liver failure; he could possibly die from chemo. When the large tumor developed we were told that due to the tumor’s size it could not be removed with surgery and if we didn’t do chemo Jake would not live three months. We decided to try the chemo because at least we would go out fighting. Jake did okay the first round but all his hair fell out, including eyebrows and eyelashes.
I found out I was pregnant again just before Jake started chemotherapy. I was so busy with Jake that I didn’t have time to worry that the new baby might have SGS. I went to the doctor every few weeks and kept in very close contact with Jake’s genetic doctor. On October 15, 2003 Benjamin “Jett” Moody was born. He did not have SGS. Right after Jett was born, Jake had two more chemo treatments, and the family spent so much time in the hospital with Jake that Jett turned two weeks old and one month old in the hospital and he also had his first Halloween in the hospital.
Jake loved Jett and he would smile at Jett and try to reach for him. Since he rarely ever cried he always laughed at Jett when he cried. I always included Jake in playtime and Jett loved to play with him on the floor. Jett always made sure Jake had a toy whenever they were playing.
Jake was such a joy to be around. When he smiled at you it would make your whole day. He could hold up his whole torso on his elbows and he recognized family members, especially his daddy. He would make funny little noises to you and he could turn from his belly to his back. He did not like to be held a lot because it was very uncomfortable for him, so after he had taken his sleep medicine I would hold him a long time.
In August 2004 when he was nearly 3, Jake started having more seizures than he had ever had. I took him to the hospital on August 15 and he was observed for three days, during which time they upped his dosage of seizure medications. On August 18 we could not get him to wake up and within minutes he started to shut down and was placed on life support. My husband and I had decided long before that if it ever came to this, we would not be selfish and try to keep him alive; we would let him go. So after three days and all the family had said their goodbyes including almost 60 hospital staff we decided to take him off the life support. At 11:30 p.m. on August 21, with Jake, in my arms, the life support was removed. The doctor said it would be only a matter of minutes. Two hours later he was breathing fine, his color was back and all the swelling was gone.
The next day we brought him home. We left the day after that and with the help of Make-a-Wish, we took him to the beach. Jake started coming back around and a week later when we came home he seemed okay. He never got totally back to his old self: He wouldn’t hold his head up any more and didn’t make as many noises but that was okay.
On his third birthday we had a huge party to celebrate the miracle that was Jake. Sadly, a week later my husband very unexpectedly passed away. This was very hard on Jake and all of us. He really went downhill after Ben died. I made sure the boys had a very big Christmas because I knew deep in my heart that was Jake’s last Christmas. At the beginning of January Jake was placed on oxygen. He passed away at home on January 31, 2005 at the age of 3 years and 4 months. It was very peaceful; I was allowed to hold him in my arms on the way to the funeral home. It was very hard to leave him there.
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