Jensen's Quilt

This is the quilt that I made for my son - but he is the one who gave it to me. Allow me to explain...

After our second visit to Lehigh Valley, I knew it was bad. With Jared it is just so easy...I kiss it, then it's better. But I couldn't fix Jensen. I couldn't do anything for him. I wasn't able to hold him during his seizures, I couldn't touch his little fingers, nothing. I felt helpless. I wanted to make a quilt for him. My mom and I took a ride over to the quilt store and bought this fabric (okay, my mom bought the fabric. Thanks MOM!!) I went home that day and pieced the whole thing together. I was on some sort of mission. In the back of my head I thought that he couldn't die if I made him a quilt (it made sense at the time). My husband even kept his distance sensing that I needed to do this. The next day I took it back to the quilt store for them to quilt and told them I would like it finished by April as his due date was April 24th.

The last time I felt my son kick was Tuesday, March 4th. It was confirmed that he passed away that day. I delivered him two days later on Thursday. My mother-in-law informed me that the quilt store called on Tuesday (the day he passed away) and left a message that the quilt was finished.

I could try to figure out the probability of the quilt being done on that particular day, or I can believe that my son made sure that I received it just when I needed it. I slept with that quilt around me every night for the first few weeks. Then the weather started to get warmer and I hung it on a quilt rack in my room. But now I let Jared use it. It's comforting to see Jared wrapped up in it.

I'm sorry....

When this all happened to us I told myself that I wouldn't make this about me. When I went back to work a colleague of mine just had a baby girl. His wife delivered this beautiful, healthy baby. Usually one of the secretaries sends out an email to the entire faculty and staff to make everyone aware of the joyous event. But not this time. They were afraid that I would be upset. The teacher whose room is next to mine and a very good friend of mine told me that the baby was born and the secretaries didn't know what to do. Of course I said, "Send the email. This is great news!" I was not going to be one of the women who turns into a weeping mess whenever someone has a baby. I thought that woman who acted like that were being selfish and just looking for attention.
I have come to realize something in the last few weeks. If my friend Mike hadn't told me ahead of time and I read an announcement email without warning I would have broken down. I get that now.
Friends of ours had a healthy baby girl a few weeks ago. They didn't call to tell us. They didn't send us an announcement. They were afraid they would upset us. We ran into them a few days ago and I don't understand what happened to me. Did you ever come face-to-face with a bear? I haven't either, so I can only imagine what would happend. My heart would beat out of my chest and I'm sure that I would be frozen until I demanded my legs to run. Well, this is how I felt when I saw them. I wanted to smile and say congratulations. I wanted to hold the baby and say how adorable she was. But my body took over. My heart was pounding so hard I could feel the blood running through my veins. And I froze. I had to remind myself to breath and finally smile. Without warning I started to cry. I swallowed the lump in my throat the best that I could so that no one would notice what a basket-case I've become. If my friends ever read this I want to say that I'm sorry. I'm so sorry that I am unable to celebrate with you. I'm so sorry that you feel you have to hide your baby from me. I'm just so sorry...

Come Again?

Once in a while someone will ask me if we're going to try to have children again. Others even encourage it. Mostly it's people that don't have children. I cannot tell you how insensitive this is. I know that everyone is thinking it, but to say it to my face. I wish there were more people that understood what my mom does - you don't have to say anything to support me, just to sit quietly and be there is all I need sometimes.

Here's a list of things not to say to a grieving mother:
1) You can always have more children (as if they are house plants)
2) Everything happens for a reason. (So there's a good reason that my child died?)
3) God doesn't give you more than you can handle. (I have seen people break from the bad luck that has been thrown at them).
4) At least he's not suffering anymore.
5) I know how you feel.

Here is a list of thing you should say to a grieving mother:
1) I am so sorry for your loss.
2) If there's anything I can do, please do not hesitate to ask.
3) You are in our prayers.
4) Take care of yourself.

Here is a list of things you should not do to/for a grieving mother:
1) Do not clean out the baby clothes and toys.
2) Do not send a congratulations card to her.

Here is a list of things you should do for a grieving mother:
1) Send a condolence card.
2) Send flowers if you wish.
3) Add family to prayer list.
4) Give the family their space.


Mostly my complaints are about people who just don't get it. They're older family members who believe that they know everything because they have more experiece in life. Yes, they know a lot more than me about a lot of things, but not everything. A family member of mine never acknowledged what happened to me. She did not send a card, she did not call, she did not attend the service. When I ran into her a few weeks later she said, "I told my husband 'I guess they just needed closure'." Closure, yes. But the service wasn't about closure for me, it was about other people recognizing that he was real. I hope that she never has to understand why her words upset me.

Other family members are taking advantage of the situation. One distant family member worked his way out of jury duty. He told the judge that he was too upset over what happened to me that he wouldn't be able to participate. At the same time my husband and I were both back at work and he was too upset for jury duty. I didn't hear about this through other family members, I heard it from the horse's mouth.

Do you think if I cry hard enough He will take pity on me and give me my son?

So, How Many Children Do You Have?

Isn't that a standard question when you meet another mother? So, how do I answer? Well, I have a few choices and all are awkward.


My answers go something like this...
"I have a 3-year-old boy." - Then I feel guilty becuase I have Brianna too.

So, most often I reply... "I have a 14-year-old step-daughter and a 3-year-old boy." But then I feel guilty again...Do I hurt Brianna when I have to put in the phrase step-daughter. As if she's not as important to me?

I rarely say, "I have 2 children...a 14-year-old girl and a 3-year-old boy." I don't want to hurt Brianna's mom's feelings.

I've never said that I have three children and that is where most of the guilt comes in. I've never heard anyone include a dead child in their count. Could you imagine how the converstation would go?
-So, how many children do you have?
-Oh, I have three.
-How old are they?
-14, 3, and dead.
then another awkward silence filled with pity.

Until I find a better way to answer (if there is one) I will continue to answer the question "I have a 14-year-old step-daughter and a 3-year-old boy".

Who am I Mourning for?

The father of a good friend of mine recently passed away. He was only 55 years young. I went to the service to support my friend and remember the time his dad mooned us!! Anyway, during the service the reverend did say one thing that I've been thinking about...We are not mourning for the person who passed away, we are mourning for ourselves.

I have to admit there is some truth to that. Jensen was suffering. I could feel him 'shake' inside of me (seizures?). I've been pregnant before, but when a fetus kicks and it actually hurts there is something wrong. Did I mourn for Jensen then? No, not as much anyway. I held on to hope. I convinced myself that it wasn't as bad as I knew in my heart that it was. No, I mourned for Jensen after he passed away. But not for him...why would I mourn for him when he was no longer suffering? Why would I mourn for the loss of a painful life? I didn't. I mourned for me. I wanted Jensen. I wanted Jared to have a little brother and a best friend. I wanted, I wanted, I wanted.

Of course I feel that Jensen was cheated. Life can be amazing and wonderful. But that was out of my control. As much as I would have tried, he would have never had a good life. People try to comfort me and tell me that everything happens for a reason. I even use to say that all the time to people. But I think differently now. I believe that some things happen for no reason at all. They just happen.

I was having a conversation with someone a few weeks ago and I said something that had nothing to do with Jensen. I can't remember the exact details and they're not important...but anyway, her responce made it obvious that she believed I was talking about him.
I complained to my mom later that night that I didn't want this incident to define who I am. I don't want to be "The Woman Who had a Stillborn". My mom told me not to worry, that in a year no one will think that.
I knew what she meant...no one would remember. It never occured to me that when people start to forget what happened to me then they forget about Jensen. The two things go hand-in-hand.
A few days ago I was having a conversation with a woman and all of a sudden she broke down over the loss of a family member. I am not the greatest at comforting people or accepting comfort for that matter. I didn't stand to give her a hug or anything like that. I thought that if I share my story she might not feel so alone. I didn't know how to introduce the topic so I just blurted it out, "I just lost my baby." She stopped crying and looked right at me. And the pity fell on me again. Damn it! That's not what I wanted. I don't want people's pity...I just want them to remember that Jensen was real. I may have been the only one who ever held him while he was alive or felt him move, but he was real. He IS real.

Jensen's Due Date

Yesterday was my son's due date. I woke up this morning and as I getting ready for work, I realized that I should have been up half the night feeding my son. I should be done working for the school year. But I am going to work and I did sleep through the night.
I know that the end of this blog should have happened two entries ago. In a way I feel that once all the steps are taken and done and over with, he will be forgotten. If I continue to make entries then he's still remembered. New people find my blog everyday and read his story.
We buried Jensen yesterday. It was a small gathering - just immediate family. There were no words spoken. My husband and I knelt on the ground and placed him in the plot. I couldn't cry. The tears just wouldn't come. I was too angry.

Thank You

I believe that Friday's memorial service for Jensen was another important step in the whole healing process. I initially didn't want to go. I was crying in the corner of our bedroom when my husband found me. He told me what I already knew...I had to go. We had to say goodbye.

Although I'm not 100 percent, and maybe I never will be, I do feel better. There were so many friends and family at the service and so many more that just weren't able to be there in person. We want to at least say thank you to all of the blog readers who have been so supportive throughout the whole process. Thank you.

Our Baby

Jensen passed away early sometime this week. I delivered him on Thursday, March 6th. My husband and I were given the opportunity to see and hold our baby son. Jensen has my nose, his father's lips and chin. He has dark hair like his brother. I imagine he has bright blue eyes like Jared and me and a softness like his dad's.
In the 7 short months that I carried Jensen, I learned more about love, forgiveness, faith, and letting go than I have the other 29 years of my life.

Read Monday's TIMES NEWS for memorial service information.

Visit to CHOP

Yesterday we went to CHOP and had three tests: the fetal MRI, an ultrasound, and a fetal echocardiogram. A consultation was held with the doctor at the end of the day.

There are three areas of Jensen's brain that did not develop correctly.

1. the corpus callosum - the connection between the left and right sides of his brain did not develop at all.
2. cerebellum - his cerebellum has a hole (for lack of a better word) in it. They believe this was caused by bleeding in the brain early in pregnancy.
3. The right hemisphere of his brain did not develop correctly either. Jensen developed an Arachnoid Cyst that is putting pressure on the right side of his brain and growing.

I can't remember everything that I was told yesterday and what I do remember I'm not entirely sure it's accurate. But here it goes...

When the doctor leads us to the conference room we sit down to a table that is empty except for a box of tisses with "Do NOT remove from this room" written on the side of it. When the doctor places the images of Jensen's brain in front of us and begins to point to certain areas while he explains, he is trembling. He explains about the 3 areas of the brain and I try to listen but I wonder why he's shaking.

The doctor says he can guarantee these things: Jensen will not lead a normal life, he will have seizures, he will have pain, and he will be severly mentally retarted. Also, depending on how long he lives he will be instituionalized because it will be too much to care for him at a home setting.

The maybes: He may never walk, talk, swallow correctly (choking and getting pneumonia often), control his bladder or bowel movements, his brain may bleed again, there are hundereds of maybes.

Please understand that I DO want to hear from my friends and family but it is difficult enough to write this blog. You can call and write emails but I most likely won't reply right away since the information is still so new.

I will post more as I remember....

email: nora.oswald@yahoo.com

February 22, 2008

We found out that we were pregnant at the end of August 2007....very excited. This was a planned pregnancy and a wonderful addition to our existing family...Jared (2 years old)...Brianna (14 years old).



During my second ultrasound we find out that we are having another boy. I'm elated. I can't help but think that Jared and the new baby will the best of friends.

At my next Dr. apt. I am told to have another ultrasound...the kidneys hadn't developed yet...no worries...the ultrasound was too early to detect them. Have the next US and there they are!



We pick out a name...Jensen. This is my husband's choice and I love it. There won't be many other children in his Kindergarten class with that name!



A few days after my 3rd US (the one that confirmed the kidneys) I am asked to have a level 2 US at Lehigh Valley (LV)...there is excess water on the brain...OK I think to myself, this can be corrected with surgery..still no worries.



At LV we are told that our son's brain is not developing correctly...they tell us he has what is called agenesis of the corpus callosum (ACC). This means that the connection between the left and right sides of his brain did not develop. AND his brain is not symmetrical. My husband and I are heart-broken. The doctors suggest that we test for chromosome count to see if there are any issues there (down syndrome, still born, death soon after birth). At first I didn't want to know. But, when the dr. explained to me that I could hold my baby when he's born knowing ahead of time that he's going to die, rather than try to resuscitate him, I decide to have the test.



The results come back and his chromosome levels are normal. This is a huge comfort to my husband and me. The only thing we would be looking at now is possibly mental retardation and that's not a problem. I can handle retardation...not death.



My husband and I start cleaning out Jared's closet (I need to have a yardsale by the way). We separte the infant toys and clothing from the things that Jared needs now. I do few loads of laundry and put all the baby clothes in Jensen's dresser.



Our second appointment at LV is not comforting. If I had a photo of the way the doctor looked at me I wouldn't need to write another word. You would understand the trouble my baby MIGHT be in. At this appointment we are warned that our child may never walk (which also means he MIGHT walk). Here we are requested to have a fetal MRI at the Children's Hopital of Philadelphia (CHOP). Basically, the doctors don't know. But how could they? The hope for the visit to CHOP is to gather as much information as possible to help my son. I know this is a good thing but I'm scared out of my mind. I'm not convinced that Jensen will survive. The doctor used words like brain destruction, severe mental retardation, etc. The doctor fears that Jensen may have more than ACC but we don't have a name for it.



This is where we stand now. We have not had our visit to CHOP as of yet. It's been a rollercoster ride for us. We're doing our best to stay positive but it is difficult. Hoping for the best and preparing for the worst seems like an oxymoron. I have to remember that God has given us two beautiful, healthy children and who wouldn't feel blessed by that?