I will apologize in advance for how sad and angry this blog will be. However I need to get all of this out somehow. The day of the catscan Madison confronted me with some point blank questions. What is going to happen if it is in my jaw bone and is my face going to change. Up until that point I had sheltered Madison from what is happening. I was always able to talk to the doctors in private and all she had known was minor details. At that point I was faced with a decison to either lie or be honest. I felt as a mom that I couldnt deceive her I wanted her to know I would never lie to her about her medical condition. So we sat and we talked and I told her it was more serious than she had previously thought and that I was researching it everyday and that I promised her no matter what I would find her the best doctor for her situation. She knows if it is in her bone then something needs to be done and if its not something still at some point will need to be done. I showed her a little girls website that has what she has and explained to her that I had been in constant contact with this other little girls mom so that way she knew she wasnt alone. At that point she seemed to take it all in stride and we went on with our day to the cat scan. Last night I put her to bed at 9 pm and at 920 I walked by her room and noticed her staring into space. I asked what was wrong she said she couldnt sleep and then it was all downhill from there. She burst into tears and cried in my arms for a long time. We cried together. She feels alone, she feels different, she doesnt want to deal with it. She is scared. She doesnt want any treatments and on and on and on it goes. I have never felt so helpless as a mother as I did at that moment. To top it all of I am a single mom and her father unfortunately just sucks. I believe that any hate I had for him multiplied to 5000 times at that moment. Today I hate him for making me do this alone. I assured maddy that I will be with her everysingle step of the way. I have been very strong up to this point being a single mom with a career, watching my mom pass away of cancer and burying her on xmas eve and in july I lost my aunt who I was like a sister to me. I have always seemed to put my big girl panties on and keep going but this has finally broke my spirit. I just dont know how to get through watching her break down. Sorry for such a negative blog…any suggestions please
Oh Sheri… I’m sorry to hear this, but ultimately not surprised. I know this is difficult for Maddy and I know she doesn’t want to do any of those things. I’ve had those moments both as a child and I will admit as an adult as well. It just sucks and sometimes we need a good cry. Both mom & daughter!!! Is it possible that C’s B can get you guys in touch with other families who are close by that might want to meet up? That way Maddy can meet someone else? Or maybe her and Arie or Camellia could become pen pals? Also, at some point show her my website. It may shock her a little but it might also help her understand that she is going to deal with it and become “old” like I am!!! I know Camellia’s mom was a little hesitant to show her my pics, but neither Camellia or Serene seemed that disturbed afterwards. And maybe only show her the ones labled “more fun” as they don’t have the ones with wounds or the ones just after treatment where I am all swollen! I don’t know…
As far as the feeling helpless as a mom. I’m sure that is true. I know my mom had a hard time with it. But that is the great thing about this site. There are lots of parents and everyone to support each other. I’m sure they will have much better advice for you than I do! Just remember that you aren’t alone. While you may physically be alone there in Boston, everyone here is ready to help and support you!
Let me know if there is anything I can do. I’d be more than happy to talk with Maddy if she wants to talk to someone who has been in her shoes. She can ask me ANYTHING about having an AVM, the treatments, my experience. I’m not sure how much she wants to talk to an “old” person, but let me know! Also, if you ever want to talk with my mom about how she dealt with it while I was growing up, and how much she learned to deal with it over the years…let me know!
Hang in there lady! We all have bad days and need to get it out… I hope that you and Maddy are able to have a good day today and maybe just go get yourselves some ice cream and a fun movie…something to chase away the ugliness!
xoxo
Sending you a big hug, Sheri! XXXXXXXXXXX I know that this is so hard and totally unfair, but I also know that you have the strength to help Maddy through this. And whenever you need support, we are here for you! My e-mail and AIM is ■■■■■■■■■■■■■■■■■■■■■■■■. I can also be found on FACEBOOK quite often…just IM me, Sheri.
My thoughts, prayers and hugs are with you and Maddy. As hard as it is honesty is the way I went with my daughter. My daughter had cancer and lost her leg below knee when she was fifteen. Believe me you will have alot of crying session. My daughter went to a conusler but she really did not participate. I do believe in it though. If you need to talk know I am here.
Sheri, I say let yourself and Maddy just feel all these feelings of hurt and fear and allow yourself to crash sometimes. It HAS to happen when you are dealing with such a life changing, serious and unpredictable medical emergency!! It IS horrible and frightening for BOTH of you and I think it is a really HEALTHY reaction for your daughter to be able to get all that out and tell you all her fears because she has obviously been keeping them inside! Children are SO smart, aren’t they and they sense and feel so much more than we think so I’m sure she could feel your panic even though you were being so careful to shelter her. Let it happen and then wake up the next day and dust yourselves off and begin the fight again.
Thank God Maddy has a strong smart mom like you. Imagine if she didn’t? You CAN do this but not without pain and anger and desperation. It’s simply not possible.
You will get strength from her and she will get strength from you and all the others who care. I know you are terrified. I would be too but just take it one day at a time. That is such a standard cliche statement, isn’t it? But truly, you HAVE to do that or you will go crazy.
They are learning more about AVM’s every day and in 5 years, they will know more.
We are all here for you to listen and help you. This is exactly where you should rant so always know that you can and we will all listen. Thinking of you. XO
Hi Maddys Mom, When I read your blog…oh how it pulled at my heart strings. As a mom you always want to make everything better. Your strength is absolutely amazing. I give you kudos for holding up so well on your own. As some point or another I think all of us here have had the need for a good cry or to be angry or ask the question of WHY? Keep venting! It truly is a way to keep sanity and peace.It’s a way to soften ones soul back to where it should be. Sorry we to have to meet at this site. Nice to meet you, Ryan’s Mom, Marla Post