There is one thing that will never change in our house and that is the fact that Bailey and Kenzi are sisters. Bailey has known about Kenzi since I was pregnant with her and since Kenzi died. Bailey does not know the "story" of Kenzi and will not until she is much older. However Bailey has a story of her own and it is her story.
Bailey has talked of Kenzi since before she was born. She talked in her little way of the two of them playing and having a sister. As Bailey has gotten older she has talked more about how much she misses Kenzi and how she wishes Kenzi would come back. It took Bailey some time to understand that Kenzi would never come back but just like all of us, she wishes Kenzi would come back. This is by far one of the hardest parts of being a parent to a child on earth and in Heaven. You cannot take away their pain and their grief.
When I first did Dolls for Daughters and told Bailey about it, she wanted to pick a little doll and mail it to Kenzi in heaven. How could I explain to a 3 year old that you cannot get mail in Heaven? I couldn't and didn't. I cried silent tears when Bailey told me this. She wanted Kenzi to have one of "her" dolls. Bailey knew then that Dolls for Daughters was about giving back in memory of her sister.
The past few days Bailey has been talking more about Kenzi. At school they learned about the Day of the Dead and Bailey talked about her drawing a butterfly that was Kenzi. She said she wished that the butterfly would bring Kenzi back to us. Simple, to the point. Bailey wants her sister back. Today on the way home from school, out of the blue, she said she wished Kenzi were here and that she missed her so much. Every time Bailey says this my heart breaks. I cannot make her sister come back and I cannot give her the only thing she seems to really want. What I hope I can do for Bailey is to help her honor Kenzi in Bailey's way. Help Bailey do what Bailey wants to do for her sister each and every year.
Bailey + Kenzi = Sisters
Thursday, November 4, 2010
Monday, November 1, 2010
Today Sucked!
When you become a parent no one ever tells you that there will be days when you will cry because you have to hold down your son's legs as someone forces him to drink something he isn't interested in having. No one tells you and the books don't either that it will suck to hold your son down while someone feeds a feeding tube in his nose and down his throat to his stomach. This wonderful event isn't shared in any of the expectant mother's books.
Today was that kind of day for me. Karson had to have another barium swallow study done. The last time Karson had one they determined that he had serious reflux, was a silent refluxer and also aspirated into his airway. Before today I knew he was still having reflux issues and my feelings were confirmed. I worked with Robin and Mike again today who are great. Mike told me that Karson would not like taking the bottle with barium in it and that he was sure he would have to put the tube in Karson's nose.
It was horrible. It was so hard to listen to Karson cry and cry while I held his legs and someone else held his arms above his head. There was nothing I could do to make him feel better. I had to turn my face and let the tears stream down. I felt like the worst mother in the world. I tried to remind myself that I am only trying to make him better and help him but he doesn't understand that. He doesn't understand why I would let someone do this to him for 20 minutes. I still cry thinking about it. It was shitty and hard.
It was also hard to see and hear the results. I could see first hand that Karson still refluxed a lot and I learned that he was refluxing when he was crying which is rare. Most kids do not do that and Karson did. My heart aches for him and what he deals with.
When the first part was over and Karson could sit up in a chair and eat food he was his happy self again. I am so blessed that he is so happy given what he has been through in the last year. And you would think that this would end his horrible day. Nope.. He had to have his first Synagis shots today. He had to have two of them, one in each leg since he is close to 21 pounds. He will have 5 of them this season, one every month. I hope this year he doesn't get RSV.
As a Mom I never dreamed I would walk the paths I have walked since I became a mother. No one ever told me it could be so hard and so scary. However I would not trade Bailey and her weeks in the NICU, I would not trade Kenzi and what she taught me (I would have her back at any moment!), I would not trade Kam who currently my Monster half the time and I would not trade Karson who has been through so much. I love my children more than anything and I am thankful that this is all I deal with. But some days, like today it SUCKS!
Today was that kind of day for me. Karson had to have another barium swallow study done. The last time Karson had one they determined that he had serious reflux, was a silent refluxer and also aspirated into his airway. Before today I knew he was still having reflux issues and my feelings were confirmed. I worked with Robin and Mike again today who are great. Mike told me that Karson would not like taking the bottle with barium in it and that he was sure he would have to put the tube in Karson's nose.
It was horrible. It was so hard to listen to Karson cry and cry while I held his legs and someone else held his arms above his head. There was nothing I could do to make him feel better. I had to turn my face and let the tears stream down. I felt like the worst mother in the world. I tried to remind myself that I am only trying to make him better and help him but he doesn't understand that. He doesn't understand why I would let someone do this to him for 20 minutes. I still cry thinking about it. It was shitty and hard.
It was also hard to see and hear the results. I could see first hand that Karson still refluxed a lot and I learned that he was refluxing when he was crying which is rare. Most kids do not do that and Karson did. My heart aches for him and what he deals with.
When the first part was over and Karson could sit up in a chair and eat food he was his happy self again. I am so blessed that he is so happy given what he has been through in the last year. And you would think that this would end his horrible day. Nope.. He had to have his first Synagis shots today. He had to have two of them, one in each leg since he is close to 21 pounds. He will have 5 of them this season, one every month. I hope this year he doesn't get RSV.
As a Mom I never dreamed I would walk the paths I have walked since I became a mother. No one ever told me it could be so hard and so scary. However I would not trade Bailey and her weeks in the NICU, I would not trade Kenzi and what she taught me (I would have her back at any moment!), I would not trade Kam who currently my Monster half the time and I would not trade Karson who has been through so much. I love my children more than anything and I am thankful that this is all I deal with. But some days, like today it SUCKS!
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