I still follow this blog created by a mom who had the fetal surgery done to correct her sons spina bifida like me and Liam had. I love reading about the progress that her son is making since having the surgery and it makes me wonder how Liam would be doing compared to her little boy. They had the surgery about 6 months before we did and I found her blog the week before we were going in to have the surgery. It was so reassuring to see that her son was doing well. She wrote all about her experience in San Francisco, the surgery, her time at the Family House, and what 's been happening in her son's life since the surgery. She also has tons of links on her page to other fetal surgery moms and things relating to spina bifida. I was happy to have came across this and learn a little more about what we were getting into. I had wanted to send her an email or comment on her blog when I first read it to see if I could ask her more questions about the surgery, but I never did and feel maybe it was for best since things didn't work out for us.
As I said I still read her blog and it usually doesn't affect me too much reading it. I feel in a way that it gives me reassurance that I did the right thing having the surgery. And yes sometimes I still need that reassurance. The other day though she wrote on her blog that she went to a spina bifida conference. She was able to meet up with some of the mothers she met while at the family house after the surgery and also met numerous other spina bifida moms.
I found myself actually getting jealous reading that.
When I first found out Liam had spina bfida I was mad and scared. I was mad because I thought I did something wrong that gave my baby this defect and I was scared because I felt that I would never be strong enough to care for a child with it. I loved my son more than anything though and did fully accept that he had spina bifida and was ready to do anything and everything to help him have a chance at a better life. I accepted it and I should be in that club, not this one. I should be meeting with other spina bifida moms, going to conferences, sharing stories, and learning about ways to help my son.
I just can't believe that 7 months later a part of me still holds onto this anger and jealously that others have these amazing stories about the fetal surgery and what it did for there babies lives. Then there is what happened to me. I probably should just stop following this blog and clicking on any other spina bifida/fetal surgery related stuff because that really isn't part of my life anymore. I mean it was, Liam had spina bifida and we had the fetal surgery, but I don't have the same ending as the others got.
And just another reason for me to cry, since I seem to be doing way too much of it this past month and I just can't stop is that I found out the other day that one of the girls on my softball team who hasn't been playing recently is pregnant. She just finished her first trimester I guess. Happy for her as I am anybody, but why does everyone else keep getting pregnant? Why couldn't I be the one the bench pregnant:(
So here I am 7 months later and I am still sounding like this broken record. This bothers me, that makes me cry, that breaks my heart, that makes me angry. Majority of the posts are the same, of course that is the nature of the blog I guess. The only thing that has really changed since I've started it nearly 6 months ago is adding in the ttc bit. Which so far hasn't been going so well. Ugh!
Liam,
Today marks 7 months since we were last together. I miss you more than ever. As of right now I can tell you love that it hasn't really gotten any easier. I just miss you so much and my heart hurts.
Love always, Mom
You don't sound like a broken record! It's how you feel and we are all here to support you.
ReplyDeleteI do the self-inflicted torture thing too...reading blogs and FB posts I shouldn't. I actually am taking a couple week break from FB and I think it is helping. Maybe you just need a break, you can read it in a week or so? Just a thought.
ReplyDeleteThinking of you and Liam on this 7 month mark.
Becky, it breaks my heart that you tried so hard to allow Liam to have a better life and he passed away. You did all you could to take care of him. Whatever you want to write, however you want to grieve - this is YOUR blog and you do what you need to get better. I think of you often. (((HUGS)))
ReplyDeleteBecky,
ReplyDeleteI totally understand your post and we are here to support you like your first commenter posted. You feel what you feel (my therapist constantly tells me this). I so understand what you are feeling. Over 2-years later and for what. I also had a call yesterday with the hospital where Leia was born. They've decided that a bill from over 2-years ago has been denied by our insurance and they want to re-bill us. Seriously? I lost it to the customer rep who told me this. It just all seems so unfair this path we are on. I am thinking of you and Liam. Also, when you get a second can you email me at msischorogers at gmail. I seemed to have misplaced our earlier emails that we exchanged. I have a question and something I'd like to email you. Sending big hugs to you dear.
As a SB fetal surgery mom, I can tell you that you will always be part of this family if you want to be. I consider you one of us. There's a great Spina Bifida Kids board on babycenter. You might not be up for looking at it, but if you ever have questions or anything, feel free to pop in. We both went through the same experience with the fetal surgery, even though we tragically had different outcomes. I read your blog regularly and think about you often.
ReplyDelete