Well, we've finally explained to Abbey that she has the same disorder that caused Izzy's death. We have given it to her in small doses so that it's not just one huge dump of information that freaks her out. Everyone around her knows, she has a medic alert bracelet, the most important people have her hematologists number, and Dr. Lockard is in the loop with her hematologist as well. We have our bases covered.
We hadn't told Abbey because we weren't sure how she would take it. It's a scary thing for a 6 year old to learn that she has the same disorder that caused her baby sister to die.
When we gave her the bracelet we simply explained that it had her name and our phone numbers on it so that if she wasn't with us and needed help, that grown-ups could help her. When she asked why Maddy didn't have one, we said that it was because Maddy was bigger and remembered our numbers. That worked for a while.
Then one day she came home and some kid at Catch a Star who can read was kind enough to read the medical diagnosis on the bracelet and told Abbey that she had a disease that would let all of her blood come out if she got a cut. Great. So we explained that it would have to be a very big cut and there would have to be no grown ups and no band aids in order for that to happen. She was okay with this explanation.
Then around Halloween, she asked us how Izzy died. Now we have always just explained that Izzy was born with a disease that not very many people have, and that because we didn't know about it, there wasn't anything that we or the doctors could do for Izzy. So I knew she had unanswered questions. So we explained the disorder in more detail. That Izzy's blood was so thin, that it just filled up her brain and her body and made her brain die so that the rest of her body couldn't stay alive. We explained that there is medicine that can fix that, but because we didn't know that Izzy's blood was not working, we were too late to give her medicine that would work. That the doctors worked on Izzy as hard as they could, but that it wasn't fair to Izzy to keep her hooked up to machines, so it was time to let her go to Heaven.
Then the light bulb clicked.
She realized that this meant she had the same disorder as Izzy. We said yes, and she was completely silent. We told her that her blood worked very well, but not perfectly. We told her that because we know that her blood needs a little help to work, that we can give her the medicine very quickly if she ever gets hurt. She gave us both a hug, said, "Am I going to die?" We said, "Not until you are a very old and wrinkly lady." She said "Okay, I can still play right?" When we tearfully nodded yes, she ran off.
It hasn't come up since. She does talk about dying from time to time, and we discuss it matter of factly and she'll tell me what she's going to do in Heaven and what she'll say to Izzy, she makes her plans. Then I always say, "But you aren't going to die until you are a very wrinkly old lady." Then last week we added a new part to the conversation.
Her response to my last statement? "Just like you?" I laughed and she explained, "because you never eat sugar, you only eat healthy, well except your gum, you have sugar in your gum and sometimes you drink soda. But usually you are very healthy, so you will be very old when you die. But will you have wrinkles? You say your lotion is for no wrinkles so how will we know you are old if you don't have wrinkles......."
Kids
We hadn't told Abbey because we weren't sure how she would take it. It's a scary thing for a 6 year old to learn that she has the same disorder that caused her baby sister to die.
When we gave her the bracelet we simply explained that it had her name and our phone numbers on it so that if she wasn't with us and needed help, that grown-ups could help her. When she asked why Maddy didn't have one, we said that it was because Maddy was bigger and remembered our numbers. That worked for a while.
Then one day she came home and some kid at Catch a Star who can read was kind enough to read the medical diagnosis on the bracelet and told Abbey that she had a disease that would let all of her blood come out if she got a cut. Great. So we explained that it would have to be a very big cut and there would have to be no grown ups and no band aids in order for that to happen. She was okay with this explanation.
Then around Halloween, she asked us how Izzy died. Now we have always just explained that Izzy was born with a disease that not very many people have, and that because we didn't know about it, there wasn't anything that we or the doctors could do for Izzy. So I knew she had unanswered questions. So we explained the disorder in more detail. That Izzy's blood was so thin, that it just filled up her brain and her body and made her brain die so that the rest of her body couldn't stay alive. We explained that there is medicine that can fix that, but because we didn't know that Izzy's blood was not working, we were too late to give her medicine that would work. That the doctors worked on Izzy as hard as they could, but that it wasn't fair to Izzy to keep her hooked up to machines, so it was time to let her go to Heaven.
Then the light bulb clicked.
She realized that this meant she had the same disorder as Izzy. We said yes, and she was completely silent. We told her that her blood worked very well, but not perfectly. We told her that because we know that her blood needs a little help to work, that we can give her the medicine very quickly if she ever gets hurt. She gave us both a hug, said, "Am I going to die?" We said, "Not until you are a very old and wrinkly lady." She said "Okay, I can still play right?" When we tearfully nodded yes, she ran off.
It hasn't come up since. She does talk about dying from time to time, and we discuss it matter of factly and she'll tell me what she's going to do in Heaven and what she'll say to Izzy, she makes her plans. Then I always say, "But you aren't going to die until you are a very wrinkly old lady." Then last week we added a new part to the conversation.
Her response to my last statement? "Just like you?" I laughed and she explained, "because you never eat sugar, you only eat healthy, well except your gum, you have sugar in your gum and sometimes you drink soda. But usually you are very healthy, so you will be very old when you die. But will you have wrinkles? You say your lotion is for no wrinkles so how will we know you are old if you don't have wrinkles......."
Kids
I love her. So much. :)
ReplyDeleteYou are an awesome mother!
ReplyDeleteErica
Ditto what Julia said. She is just a sweetie cutie pie. :)
ReplyDeleteAbbey sounds very smart. You can tell by just reading your post that she really thinks about things. Coming from someone who also has a bleeding disorder and kids, I think you handled that perfectly! Abbey has someone special on her side!!
ReplyDelete