~ Thoughts & Letters ~

I have written a lot since Taylor's death. To put my thoughts on paper and just get them out has been very good for me. It has truly helped me to survive. I write to my son, my friends who have endured the same loss, God and even myself~ those who will listen (not judge) & not turn away...

In my journey through grief, I have found that others don't want to hear what is on my mind. I have found that those around me feel more comfortable acting as though Taylor did not exist, it hurts them less. This has made life more painful & very empty. I have had the subject changed, I have had my Dr. walk away as I'm talking. I have had people tell me that maybe I'm going through "the change" because my emotions were a mess. Are we not suppose to have the same symptoms after birth... because our child is dead? The same person that told me this, told me after a previous birth, that it takes 9 months for horemones to calm. This says a lot about the way a bereaved mom (of a baby)is percieved. We are not suppose to have "Post partom blues"... we don't have a baby! Nobody recognizes the fact, that our milk still comes in on time. Our bodies don't understand that our babies are dead~ we ache for our child. Our arms literally ache to hold them. We wake often "hearing" our babies. And we are still "normal".

How are we suppose to act? I feel different now. I don't feel like the same person I was... we didn't ask for this new roll as a "bereaved parents" & are fairly new to this. I would gladly give it up in a heart beat. I feel so confused over many things.

I'm confused with "CHD"! Where is it coming from? First the drs. said there is no connection between the two, the heart surgon I spoke with said "We don't know of another case of these two defects affecting the same family. It just doesn't happen", "It's a case of lightning striking twice". Now I'm told my CHD son has a 15% risk of having children with CHD. It is genetic. Yet no genetic testing has been done and there is no other CHD in our families. An individual study was to be done, yet I've never recieved answers?

I can easly say that my faith has been SHAKEN. My faith in God, medical treatment, family & friends, *life* in general has been shaken... It hurts no less because my child was 15 hours old apposed to 15 years, it hurts no more than if he was born "still". Like all dead children, he is missing. Taylor is our son, he is my children's brother & he is sorely missed. Our grief is on-going. We can not stop it for others, if we could stop it... we'd stop it for US.

A letter from Stephan M. Wall, Phy.D has brought me a great deal of comfort in knowing that I am "normal" in my grief.

May 28, 1997
The intense feelings that you have mentioned in your letter does not appear to out of the ordinary for someone who has gone through this kind of loss. Your anger and emptiness is certainly to be expected from these kinds of issues. The comfort of others seems also to be quite hollow. In their attempt to make you feel better by treating your sons death so casually thay have actually increased your anger and difficulty. There was a life and there is real mourning that goes along with it. Anything less than this indicates a problem. Don't try to hurry yourself along because others are so casual or anxious for you to get better. You will need as much time as it takes to feel all there is to feel. You will feel different in time. That does not mean that you will never hurt again. There will always be loss in your life. You're pain in time will feel different, more manageable.

I have learned when I see someone that I judge as "different"~ not to BE judgmental. I don't know what they may have faced in their life, I may never know, and I am now "different" too...

As I returned home after my sons death, I was numb, my brain couldn't think. A lot of my memory was gone, I was in a fog. The phone calls & visitor's came, and somehow I spoke with what now seems to be a "together" lightness to my spirit... I was in a great deal of denial. I didn't think this was real. I would wake up soon. It was all a bad dream. At night I would go to bed & when I woke up would be so peaceful... I finally woke up! Then within a heartbeat, I would realize it truly is real. My hand would go to my tummy and my baby was not there. He was not anywhere. It was real.
Someone had told my dr. that I was angry they hadn't found the CHD... my dr. questioned our daughter about my feelings. Yet he didn't call me. I was not angry... I couldn't feel to be angry. At the time, I was concerned that his feelings were hurt over something very untrue. Later, it hurt me to think that he would question others, but didn't bother to call me. Much later, I did loose faith in his judgement. I had been very afraid of CHD & had asked to have all tests available. He suggested we have a "level 2 ultrasound" in Seattle, yet never set it up. And when I asked again about it, he seemed as though it wasn't needed. That's when I should have got another opinion. Reasearching later, I found that many women have fetalechocardiograms... an ultrasound done on the babies heart at around 20 weeks gestation often times will spot a CHD! I was told I had a 1% risk. Later a cardiologist said I had a 2-3% risk of another CHD (because I had a previous CHD child) My dr. was very concerned about downs syndrome & stressed my getting an amnio because I was 38. I had a higher risk of CHD than downs! I got the amnio. (It was perfect) My risk of DS was about 1 in 100. Yet my risk for CHD was around 1 in 32-50. Why the pressure of amnio & NOT tests for CHD? Is it because DS is something that society has to face? If a child has a severe CHD & dies~ in societies eyes... it is over. Life goes on. In the families eyes... it is never over. And life doesn't go on for a very long time.
No, I was never angry that they didn't find Taylor's CHD. However, a lot of reasearch later, I am angered that I did not have the appropriate information & tests made available to me so that I could go where they could possibly detect CHD.

As the first two weeks past, friends & family were with us a lot, then it seemed like it happened over night. The doorbell & phone stopped ringing. One friend didn't stop. She took time out of her life to stay with me (over night even) if I needed her. (Kurt works out of town a lot) Thank God for true friends! She has been a Godsend. She understood that if it was a Thursday or Friday, the 10th. or 11th. of a month, a holiday, 4 weeks, 6, 15 months~ it was a BAD DAY. But she never turned her back. She knew me well enough to know that I wanted to die, but would not act on it. She was like a yo-yo, bouncing from her home to mine, but never giving up. I am very thankful for her.

A piece from my journal written at 9 weeks gestation & later read at Taylor's service... did I somehow know?
Sept. 10, 1996 ~ End of week #9
Well I'm 9 weeks pregnant tomorrow. One week till I'm suppose to start my pre-natal visits. I don't even want to start. I'm not sure why~ maybe just because I'll have to face the facts. I want to want... but am so very afraid to want, love and then loose. God knows this little one is so un-expected, but God also knows that I love my babies more than life itself. My babies~ big or little... they are my world. And no matter how another one comes to us... by planning or not, thry're so wanted and loved. Our baby is in God's hands~ it's all up to him.
Four weeks after Taylor's death
We've passed our one month mark. I know this by looking at a calendar and keeping track of all the "firsts" in my head, but other than that~ it feels like our lives have stood still. We are "stuck" on April 10, 1997. Try as I might... I can't move on! I hate it! I don't want to do the traditional steps of grieving. I want to hold Taylor in my heart and memory forever, but go back to our normal life. I want to feel. To have a reason to put my feet on the floor as I crawl out of bed each morning! I want to find God again~ to believe he's there beside us again... it's a lonely road when you walk it alone!

Everyone says "You have your other kids and Kurt- they need you now more than ever". And that hurts. Because I know this better than anyone! And I am there for them... but I'm consumed with sadness. I do my absolute best to put my own hurt aside when they need me. It's just very hard when I don't really know how to hold myself up~ muchless everyone else too. My survival is my kids, Kurt and writing all of my feelings on paper. And reading all I can about surviving this type of loss. It helps. It also helps to know that we've hit the one month mark~ because even though it's a life of hell... we're still here! And occaisionally we smile!

~ Other Babies ~

Something that others have a very hard time understanding, is that it hurts *so* bad to see other babies. Others seem to think that having another baby around, is going to somehow HELP me to get "better". People have asked me (since our 21 y/o daughter had her baby only 7 months after Taylor) if he helps me to feel "whole" again? No- it HURTS. I am *happy* for others who have healthy children to raise, but with each baby born to those close to me, my heart bleeds for one of my own. It's hard to explain. I am so very thankful for those healthy children, but the pain is raw & is so intense. I'll never forget the time I placed my hand on her rounded belly... I thought my heart would break. Oh God, how it hurt. Mandy's baby came 30 weeks exactly (almost to the hour) of our baby. She wanted me to be in the delivery room. I told her that if I could- I would. As the time drew nearer, she moved back into her old room as she was between apartments. I had this pregnant person IN MY HOME! Daughter or not... she was very pregnant & it hurt. Mandy had her baby~ a boy, and named him Andrew Taylor after her baby brother.

I somehow managed to be in the delivery room. I had decided that I *had* to be Mandy's mom first... if she wanted me there- I *had* to be there. It was *so* hard! The tiny little o2 mask, all the birth preperation was so familiar~ I rolled the video camera for her. I did okay, but as that little guy cried, my heart felt like it would stop. Nobody will ever know the intensity of this pain... That day, Kurt & I cried a *lot*. He couldn't go to the hospital to see them at first. The day was such a reminder of what we could *never* have.

I still feel "robbed". I feel robbed of so much. My beautiful baby, my innocence, our happiness, faith, friends, family, even the happiness we dream of having when our children have their children. It was pain & sorrow for me. I held the little guy, and cried. I held him because I felt I *should*. I looked down at this baby in my arms & would see MY baby as I held him. For that second, I *saw* my child. I learned what Dr. Wall had told me about "flashbacks" & "Post Traumatic Stress Disorder" (PTSD). I couldn't bond, I couldn't feel joy. I felt nothing but grief & sadness. Nothing was the way it *should* be. I remember waking to the first sounds of a newborn crying in the middle of the night. This time it was real~ not in my dream/mind. But it wasn't MY baby. Kurt held me in his arms and I cried myself back to sleep.

Only now, (over a year later) can I see little Andrew & NOT feel constant pain. I see *him* smile. I don't see Taylor in everything he does. I can enjoy *him* now. Though I don't feel the part of a "grandmother". Somewhere, in the wall I errected~ I "missed" that part. I *had* to rely on this wall for shear survival. Yet, nobody understands this. Others seem to feel I have been uncaring & self centered. I couldn't go to the baby shower, I couldn't do what others felt I should. Someone in our family voiced to me that I was not reacting "normal", I was showing to much grief around my children. We lived in a "grief pitt". I was doing it wrong. "Even the bible says~ there is a time to grieve & a time to move on'"
It is so hard to not be understood...

2 years & 3 months later...I feel like we have come a long way now. I can finally see that things do eventually get "barable". I cannot say that I'm "healed", that I never cry or that it's all "okay". But I can say, that life will eventually take on a new "normal". We will find new reasons to hold on- new reasons to put our feet on the floor.

Mandy had another baby boy this past March 5. I was there for his birth as I was with Andrew's. Little Dylan Matthew's entrance into the world was *much* less traumatic than the last. It wasn't pain-free for me (or Mandy :) but it was not entirely painful either! He is a beautiful little boy & in no way makes me *see* Taylor.

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