Angel Jayden

August 2, 2004-August 6, 2005

Iím Jaydenís Grandma and I am writing his story as a tribute to him and his mother. I canít make the pain of losing Jayden go away but I want everyone to know how much he was loved and how he touched all of our lives. He was such a wonderful little boy and anyone that spent any time with him at all fell head over heels in love with him. He was perfect just the way he was and you couldnít help but feel closer to God just being in his presence.

 

Jayden Allen Lewis was born August 2, 2004. We were told before he was born that if he made it to birth that he would not live more the a couple hours. They told us that he might have facial deformities and lots of other problems. His head was enlarged and my daughter, who is pretty small, had to deliver him c-section. I went into delivery with her because she was afraid to go by herself and Jaydenís Dad didnít think he could face seeing him born with deformities. Well this was the first time, of many, that the doctorís were wrong. He was a perfect baby boy, except that his head was a little larger the normal. We just saw him for a moment and he was whisked off to NICU. He could not hold his body temp or suck, and was having seizures but was breathing without oxygen in only a few hours. The doctor told his parents that he could not feel hunger or pain and that they should just stop feeding him and let him go. We just couldnít possibly do that, and one of his wonderful nurses said that she was glad that we didnít take that doctorís advice, because she knew from taking care of him that he does indeed feel pain and hunger. His head was getting larger and at 11 days old he had his first shunt surgery. After that he began to do so much better. He had two great nurses in the NICU, Maggie and Michelle, and they were very patient with him and worked very hard getting him to suck which paid off and he came home from the hospital at around 3 weeks old. We were thrilled because the doctors told us, wrong again, that he would never be able to come home. He has lots of family who loves and adores him, Mom, Dad, sister Hailey, brother Hunter, Grandma, Papaw and aunts and uncles. As much as I loved him I still cried a lot and started reading stuff on the internet that was very depressing and negative, just like the doctors. He was also diagnosed with lots of other conditions, Diabetes Insipitus, Hypothyroid, Adrenal problems, and still couldnít hold his temp very well. He was on medication for all that and still on medication for his seizures. My daughter was great at making sure that he got everything that he needed when he needed it. He was legally blind, but could see a little sometimes, some light and color (yellow and maybe red), but his hearing was good and he loved music and being talked to. He liked being sung to and sometimes he would sing with me. When he was feeling well and he would smile it would light up a whole room. Oh how I loved that smile!! The doctor said that he was not smiling that it was just a reflex, one more time the doctor was wrong. If it was reflex why didnít it happen when he was sick or only happen when we talked or sang to him? Also the doctors told us that he could not recognize us, again they were wrong, he knew us all and knew which one of us he wanted at any particular time. When he wanted Mom she was the only one he would let do for him, same with Dad and Grandma. When his sissy would talk to him he seemed to look for her. The doctor said to me that I was seeing him with my heart and not with my eyes and these things werenít happening. I told her I couldnít think of a better way to look at him. He had his own little personality and would get mad with you if you did something that he didnít like and stay mad with you for quite awhile. I remember being at my daughters house and Jayden had pulled out his feeding tube and my daughter had to put it back in and he got so upset with her that for a couple of hours every time she came close to him he would cry and when she would move away from him he would stop. I ask you does that sound like a child that does not know anyone or anything? Another example of this is one time when he was in the hospital, after his last shunt revision, the nurses couldnít get him to eat and he would only eat for his mother or me. The nurses told us we had him spoiled and we agree! One time, after one of his revision surgeries, they had not let us feed him yet and his daddy got there about the time they had said we could feed him. His daddy started talking to him and he was cooing back at his daddy. His daddy said, these old women wonít feed daddyís boy, daddy will feed you. He was cooing at his daddy and tapping him with his little arm. I wish the doctor could have seen that and then they could see this wonderful boy was not the boy they thought he was. He had home care from PT, ST, and OT from an origination called Project Run and they are the ones who told us about this group and we joined when Jayden was about 4 months old. That is when I finally felt some hope and with the support of these people was able to know that he could indeed have a full life. In his short life he had many struggles and had to have his shunt revised 5 times and was hospitalized twice with colds. A couple of times I thought he would not be able to pull thru but my daughter was sure he would, until the last time. She and Jayden had a special communication and they understood each other completely. The last time the doctors said there was nothing else they could do for him she decided to bring him home to tell him good-bye as a family. I thought that the doctors had given up on him but my daughter said that he was tired and was ready to go. So on his last day here with us he was surrounded by all of our love and we all just took turns holding him and loving him and all told him good-bye in our own way. On Saturday August 6,2005, 7:18 am, at 1 year and 4 days old, Jayden was passed from his mothers and my arms into the arms of Jesus Christ. I know as loving and comforting as our arms were, they were nowhere near as loving and comforting as the arms of Christ. This was the hardest thing that I have ever done in my life not only did I have to let my beloved grandchild go but I also have to watch my daughter let her special baby boy go. When my daughter told his sister Hailey that he had passed she told her mom ďItís okay Mom, we donít have to be sad because now his sprit can see and heís not blind anymoreĒ This 5 year old child is so understanding and trusting of Gods promises that she wanted us to understand and be comforted by this fact. Jesus is now rocking Jayden in a special rocking chair and one day I will be able to rock him again and we will all be with him again and until that time he will be watching over us.

 

 Project Run sent me a card that they made, and I wanted to include the poem.

 

 

 

                                              An angel fell to earth one day

                                                A strong family he needed

                                                  Where should he stay?

 

                                        God must be careful with his choice

                                                Times would be difficult

                                               He would need a strong voice

 

                                         This angel you see would not stay long

                                          Like a rose that blooms and then is gone

 

                                   This angel would teach us about love ever more

                    On August 6th he left us and went back through Heavenís door

 

                                                   Today he is playing happily

                                               Knowing heís had a Great Family!

 

 

 

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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