Facebook athon

The Fetal Hope Foundation will be having their annual Facebook-athon. http://www.facebook.com/pages/Fetal-Hope-Foundation/70302707927?v=wall#!/event.php?eid=198070003566088

I am so excited and honored to be asked to join this great event.

I will be on at 8:30 pm EST. Tuesday April 26th.

Hope to talk to you all then!

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.
Love,
Susan

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.

Dealing with the holidays.

I have recently learned through my own emotions that just becasue you may have lost someone years ago, doesn't mean that the holidays won't be hard to cope with.

My son passed in May of 08'. That Christmas was so difficlut. 09" seemed to be easyer, maybe it was becasue we had our daughter Sarah in august of 09'. but this one, 2010 seems to just be tearing at me. I can't release this pain. I am going to get through this. My husband is here with me, I have Faith and Sarah. But I am finding my mid wondering.

It could just be with the book coming to a end that I have a few how to say unresolved issues to cope and to deal with. I know I need to talk to my husband to make sure that he knows what's going on w/ me, but so I know what he is dealing with as well. He lost his sons. We held Thomas and said good bye together. I know he misses them. And maybe all we need is s good cry.

Just becasue we have a list of thing to do, the shopping, wrapping presents, doesn't mean that your life stops. You eed to learn how to deal, roll with the punches, so to speak.

I did it!

In January of 2011. my book will be out! It will be available on kindle, and then paper back.

I have 22 women's stories all together.

If you liev abroad and cannot get it let me know and I'll send you one. No one should go through TTTS along.

The title will be "LINKED FOREVER: A MOTHERS JOURNEY THROUGH TWIN TO TWIN TRANSFUSION SYNDROME".

Finding new moms...

I know that it's been a while since I last posted something.

But I really wish the new moms had something more. Something they could hold or have better support.

That can be the best thing to ease a mothers worries. To know her family, her support system is there for her. I wish that everyone who has read my blog would write a note or send me a message. I would be more then happy to talk to anyone to discuss what is happening and not to give up.

I wish more families took the initiative to learn about TTTS. If they could ease the stress a little bit, I could help. 

deciding on what treatment.

I have been asked this a lot over the past 2 years. "How did you choose the treatment option?".


Well, is a combination of  what you the mom or dad feel is right for your family and how your TTTS has developed.

Such as the laser treatment would have save both of my sons had it not been for the anterior placenta. And due to that had we chosen to terminate one son, the other more then likely would have survived. But, we did not have this information durring the pregnancy.

We can rest knowing that we gave both sons a fighting chance.

We knew we couldn't have lived with our selves if we went through with the selection and then to find out we would have had both, had we done nothing.

You basically have to search you own heart to decide. Also know, that no one can judge you. Parents, siblings, clergy, strangers, they will but shouldn't.

poetry

I WAS ONCE YOU
By: Colleen Fledderman
Newtown Square, PA

Bereaved Mother
I have never met Carlie Brucia’s mother, Nicole Brown Simpson’s mother, Polly Klass’s
mother, Princess Dianna’s mother, Carolyn Bessette Kennedy’s mother or Laci
Peterson’s mother. But I know them all intimately. I know what dwells in their hearts
and souls everyday. Like them I buried my daughter.
What am I now? Am I a daughterless mother? That sounds like an oxymoron, two
words that contradict themselves. My eighteen year old daughter, Amy Marie, died on
May 25, 2001. My life is forever changed. Burying a daughter is a surreal experience.
There are no words in Webster’s Dictionary that can explain the grief, the heartache, the
pain, the depression or the anguish. Heartbroken is too small a word. The words don’t
exist because it is not supposed to happen. There are no plausible definitions that could
accurately describe “bereaved parent.” Groups of words can’t be strung together on a
typed page to accurately explain the grief. It is impossible to bury your child, yet it
happened.
Logically, the factual part of my brain processed the information. The emotional part of
my brain argues with the fact everyday. Each and every morning it is still a shock to my
entire being! I still peek into her bedroom and expect to find her perfectly made bed a
mess of jumbled covers with my daughter snuggled deep inside of them. Parents don’t
bury children! Headstones read “loving mother,” “cherished wife.” They don’t read
“beloved daughter.” That is not the natural order of the universe. This was not supposed
to happen to me. It always happens to other people. I see reports on the evening news,
articles in the newspaper describing horrible events that resulted in the death of
someone’s child. It isn’t supposed to be my child. How can this be? It can’t be changed.
I can’t say, “Amy, want to go to the mall?” “Let’s go out to lunch.” She can’t tell me
about her “freaking bio test” that she has to study for all night long.
Things I want to say to her are forever left unspoken. How will I go on? I can’t go on,
yet I do. My body wakes up each day. I don’t ask for this to happen, it just does. My
lungs take in air, it is automatic, something that I have no control over. My physical
body now controls the course of events in my life. I breath, I eat, I walk, I talk, I put one
foot in front of the other. I load the washer and shop for food. I can work. I can teach. I
can think on the job about the job. My spiritual being merely exists. It cannot flourish or
soar ever again.
When my daughter died, my emotional self was buried with her. When she died, I also
buried her future husband to be, my future grandchildren, my daughter’s future wedding,
my daughter’s college graduation ceremony, my holiday, my joy. I buried my best
friend. I buried the once perfect life that I knew and lived everyday. Tucked into the
corner of Amy’s casket is my happy husband. My despondent bereaved husband now
lives with me. I buried my fifteen year old daughter’s future matron of honor. I buried
Renee’s future nieces and nephews. There is not enough room in Amy’s casket for all
the things that died with her. Dreams, hopes, joys, lives, emotions, hearts and souls
slipped into that casket with Amy. They occupy every square inch of that place. One
day my fifteen year old daughter will be older than her older sister. Can my brain every
understand that? Renee will have a nineteenth birthday. Amy did not. How can the
impossible happen?
Bereaved parents go on. We go on because we have no other road to travel. It is just we
are not “normal” anymore. We used to be you. We used to be the PTO moms and the
Girl Scout leaders. We brought lovely frilly fancy holiday dresses for our daughters. We
were once carpool moms and soccer moms. We sat at musical recitals and listened to the
first melodious squeaks and squawks of their instruments. Forgotten homework
assignments were rushed to school for our children. In our heads we planned our
beautiful daughter’s future wedding. Vision of the bridal gown and the reception danced
in our heads. We couldn’t wait to have grandchildren and baby-sit and enjoy. We wanted
to tell our daughters that their children were just like them. Our daughter’s christening
gown is carefully preserved and awaiting to be worn by her own children. We wanted to
hold our grandchildren’s chubby little fingers in our hands and remember holding our
daughters chubby little fingers in our hand.
We used to answer the telephone and hear, “Hey mom, what’s up?” Now the phone
doesn’t ring. And it will never ring again with that sweet voice we so desperately would
love to hear. Now we are set apart. We are not normal anymore. People choose to walk
down a different aisle to ignore us. It is too painful for them to think about our lives.
They might take a moment to wonder how we go on. They say, “I can only imagine your
pain.” That is not true. No one can imagine it unless they live it. We now belong to a
new group. We never wanted to be a part of this group, bereaved parents. No one lines
up for this membership. We wish our membership would never grow. I am glad you are
not me.