The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Saturday, September 10, 2011
protective bubble
So I had my 6 week postpartum visit with the OBGYN this week. I really like my doctor. Anyhow, she asked how things were and in explaining how difficult the week was I started crying. No surprise. We then had this really great talk about the challenges Jim and I are facing. We are essentially caring for two infants. One just happens to be over 35 pounds. The doctor said that the effect of having a second kid is not additive, but exponential. In our case, she said it is even more so because of the needs of Eve. I explained how I'm so very scared that Seamus won't be healthy. She said that people live in a protective bubble in which they believe that bad things happen to other people. However, that bubble was burst for Jim and I with Eve's disease. So, we worry more intensely, and we will be hypersensitive to every milestone that Seamus makes. I've been thinking about this a lot. I think that's why I tend to focus more on the negatives when people ask us how things are going with Seamus. I don't like to talk about the good things. I'm so afraid that if I say it out loud, or it appears as though I am bragging, that it will be taken away from me. I know this is irrational, but it's how I feel. The first year of Eve's life was filled with blissful ignorance. We thought she was going to be this superstar (and in her own way she is....just not the way we expected). All those things we expected just never happened. I desperately hope this time is different.
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4 comments:
I can't understand totally, but since we are facing Celia's diagnosis, I can relate in some ways. I worry about things that other parents could never fathom. How to help her/carry her/give her quality of life as she grows. Can I lift her? Can I care for her and the others well? What if something happens to one of us? What if her twin does have it too? And the list goes on and on..
I get it, in a small way. Big hugs to you and prayers for your little guy.
I totally get that! We are the same way. My son who is older than Maggie was diagnosed with the same disease and the doctors tell me that at any point his body could go on a downward spiral like Maggie and we could lose him too. I struggle to say any of the good things outloud or even think them for that matter because I am scared he will go downhill.
I also struggle to have another child because I think either I will be super scared and worried about every little thing or I will be in denial and think that this can't happen to another of our children because I know people are going to think I'm going to be paranoid because of Maggie but then I don't want to be like that. I don't know if that makes sense?
Anyway I get it. I hope everyone is doing well and Seamus continues to be healthy!!
Hey Duchess - I get what you feel - I cannot feel the same because I have no frame of reference like you have with Eve. However, you need to know that just about every parent out there worries on a daily basis about whether something will happen to their children. Even now that my guys are big people I worry about accidents, partners, health concerns etc. It is natural to feel what you feel, you just have that feeling compounded because of your situation. Much love to you all - don't ever deny yourself the feelings you have - and when you want to scream and say that it is not fair - you've earned that right! love you, Higgins'
Hey Duchess - I get what you feel - I cannot feel the same because I have no frame of reference like you have with Eve. However, you need to know that just about every parent out there worries on a daily basis about whether something will happen to their children. Even now that my guys are big people I worry about accidents, partners, health concerns etc. It is natural to feel what you feel, you just have that feeling compounded because of your situation. Much love to you all - don't ever deny yourself the feelings you have - and when you want to scream and say that it is not fair - you've earned that right! love you, Higgins'
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