Friday, March 4, 2011

Getting feed back.

Now that the book is out. I am getting some feed back on Forever Linked A Mother's Journey Through Twin to Twin Transfusion Syndrome.

Here is what one mom wrote to me:
Susan Kaczynski-CajigasHi Ladies,
Just wanted to write after just finishing Erin's book today. Wow!! Way to go Erin! It was heart wrenching to read and be transported back to that awful time of my life, but it was such a relieving feeling to know that I am not the only one that felt those feelings the whole journey.
I have been struggling a lot lately since Megan's anniversary comes up at the end of March. I can't tell you all how 'normal' everyone's feelings/excerpts made me feel. I dreamt all night long about TTTS and Megan. I had journal-ed my whole pregnancy, but can't bring myself to go back and read it. In this horrible journey, I sometimes question whether I am going crazy or is this just normal? Sometimes I get so busy with work, kids, family, etc and I think I am going along ok, but then the littlest thing just sets me off. The other day I actually called Emily-Megan??? She of course looked at me, threw her hands on her hips and adamantly declared that Megan was up in Heaven. I just burst out crying and she thought she had upset me. So, she curled up on my lap and I explained that mommy missed Megan so much and sometimes she cries, but that I love both of them very much as well as all her siblings. The older she gets, the more animated she gets especially when we talk about Megan. She will always talk about her sister, pray for her, talk to her, and sends her a balloon everytime she goes to the grocery store. It seems to get harder as Emily gets older?? Does that make ANY sense?? Maybe because she understands more and we encourage her to talk about her sister. After reading the book, I realized that the people who are my biggest support system at this point in my life are all my TTTS moms. My family and close friends were in the beginning, but like many of you moms said, people who have never lost a child, will not understand our journey. And the most amazing part of that is that I have only met 2 of my TTTS moms in person!!
The book stirred up so many emotions for me-I wish I would have had it to read when I was on bed-rest for 21 weeks :):).
And after reading the book and knowing what I know after researching TTTS the whole time I was pregnant, I am convinced that was what lead to Megan's death at 6 months. She constantly struggled in the womb, and I have never said this out loud, but I ALWAYS felt that there was just something 'off with her'. I could never place my finger on it, and I tried to make excuses for it, like "she'll be the quiet twin, or she was my donor". I just couldn't put my finger on what was bothering me. She was as healthy as a horse, according to the doctor when she died. The only abnormality the ME could come up with on her autopsy was an enlarged thymus? This is what haunts me daily. What if I would have listened to my instincts? Could I have saved her? What if, What if, What if??? That is the hardest thing to let go of.
I sometimes still struggle with "what good came out of this bad", or "I don't understand my role in God's plan"? I am a very optimistic person, but I still search for these answers daily.
I hope this note finds everyone happy and healthy.

This is why I wrote it. To help people get the idea of what we went through. I know that some of it is hard to get through, but it was.

Take care.

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