"Life after Potter's Syndrome"


"Grief takes time.
You won't get over it in a month or even a year.
In fact, you never get over it.
You blend it into your life, and make it part of you."

The meaning behind this site....

Life after burying my son was difficult. I found it difficult to move forward, and found myself living in the past, trying to keep my sons memory alive......Making sure that he was never forgotten. This site is proof of that. I spent too many hours early in the morning, during the day and late at night constantly working on this website. It was my way of holding on to my son. My way of not giving him up. In a way, working on this site was comforting. While working on this site I didn't feel the pain and grief of losing my son because I was constantly reliving the times when I was pregnant and when I was in labor. I was constanly reliving those moments when I held Isaac in my arms when he was alive and I could still smell him and hear him and feel him in my arms again. That emptiness went away for a little while because while reliving those moment I had my son with me again. So that is why this website is what it is. I used it to let my emotions out instead of the usuall way of grieving by crying and sulking.....My tears came out in these pages, and all of these words. While writing out my sons story, I was able to reflect upon the whole situation. I was able to see what I truly felt at the time, and how I feel now. I was able to realize my sons purpose, and learn that God truly had His hand in this. I was able to notice the times through out my pregnancy, Isaacs birth and life and the days following, when God was there holding me up..... 

The First week

The week following the funeral was one of the longest. The hours and minutes seemed to drag by slowly. Isaac was all that filled my mind every waking second. I felt an emptiness in my heart that week that I've never felt before or afterwards. My milk had come in and there was no baby there to feed.....That was hard to deal with. It made me angry. There were times that I wanted to scream and yell. There were times that I just wanted to be alone so I could cry, but I never did. I didn't want to cry. Trent and I were so depressed that week, that everyday we made excuses to go to town just to have something to do.

A week had passed and I had not shed a tear. I felt it building inside me though. I could feel the anger, grief, sadness and emptiness building and was getting ready to explode at anytime. So I knew I had to let it out eventually. So one day after I had put the girls down for a nap, I took a moment to myself to let it out. I sat there on our bed and cried. I bawled and screamed into my pillow. I sat there crying telling God over and over that I wanted my baby back. Then I cried as I asked God why this had to happen to me, why he chose my son and not someone elses. Why Isaac....why my baby? Afterwards,  I layed there feeling betrayed. I can still hear myself that day begging God to give my baby back. It was pitiful........ 

A desperate need....

Before I got pregnant with Isaac, I was wanting a baby. That is why I got pregnant with Isaac....I wanted and needed a baby. So when I found out I was pregnant, I was excited and happy although I didn't tell Trent that. I led Trent to believe that it was an accident, when it was no accident and I knew what I was doing all along.

After Isaac died, I still had that want and need in my heart to have a baby. My body was still in mothering mode. It needed a baby to love and nurture. So I became desperate. I ignored all of the usuall precautions that come after having a baby to not get pregnant. I felt desperate to become pregnant again. I tried time and time again to become pregnant. 

When my first period arrived, I was devastated!!! I wanted to cry and scream. I now had to wait another 2 weeks to try again, and that was not okay in my mind. I needed to be pregnant, I wanted to be pregnant. I wanted a baby so badly it hurt.      

Hard times and hard reminders...

May 19th marked the beginning of a very hard couple of weeks for me. May 19th was my estimated due date with Isaac. Since Isaac was 3 1/2 weeks early, he never made it to his due date. Getting to that date, just reminded me that he was no longer with us. I became depressed after that. On May 25th, I grew even more depressed. May 25th marked one month since Isaac passed. Then June 1st, I got my first period after I had Isaac....which meant that I wasn't pregnant, and my attempts at getting pregnant were unsuccessful. So that didn't help the situation.

I cried a lot those couple weeks following May 19th. Sometimes we would be driving down the road and I would think of something or see something that would upset me, and I would try my hardest to hold back the tears but would end up crying anyway. Or sometimes I would just lay in bed and cry silently, hoping not to wake up Trent. Other times I would sit here at the computer and bawl, usuaully when the girls were having a nap.

One particular night that stands out in my mind. I was looking on the internet just before bed. Trent was already in bed sleeping and I was just checking a few things before I went to bed. I came across a site that had a bunch of babies that were the same age as Isaac if he had lived. I seen their pictures, and there mothers holding them. I seen the hospital photos, and pictures of them in carseats. It just reminded me of all the things I never got to do with Isaac, or all the things I will never get to do with him. It upset me and I cried for a long time that night.....probably the longest since the funeral. I finally went to bed and continued to cry, hoping that Trent wouldn't notice. He did notice of course. He asked me what was wrong, and why I was crying. I finally just told him that I wanted my baby.....and continued to cry. So he just held me and let me cry.

Not myself anymore....

One thing I noticed after Isaac passed, was that I was no longer myself anymore. On the outside, I'm sure I look and act the same. On the inside though, I have noticed a lot of changes. One example is that I don't do anything that I liked to do before. I used to like to read, and could read a novel in just a few days. I started a book not long after Isaac passed....it still remains unfinished. There are games that I used to play on the computer. I havn't touched them, or even had any interest in playing them at all. I have bought more in hopes that maybe I just grew tired of those games....but nope, those games remain unfinished too. I used to like being around people, and found comfort in being with people. Now I find myself only wanting to be with certain people. Or I would just rather stay at home and do nothing. Sometimes I force myself to do stuff just to get out of the house. 

I feel like a part of me died with Isaac. I'm no longer myself. I put on a happy face to hide the broken heart.

Trying to love my girls....

One thing that happened after Isaac passed that bugs me a lot, is how I became with my girls afterwards. I became emotionlly withdrawn from them. I didn't do it intentionally, but it just happened. I didn't want to do anything with them. I would have rather they stayed with their grandmother. Its almost like I didn't want to become emotionally attatched to them just in case something were ever to happen to them....then maybe it wouldn't hurt so bad. I seen how much it hurt to lose Isaac, and I had only carried him in my womb for those 8 months, and then spent only an hour and 19 minutes with him. Losing him proved to be almost to much for me. To lose my girls.....would be unthinkable. I don't know if I could live after that. So I think, I was thinking that if I wasn't to attatched to them emotionally that it wouldn't kill me later if I ever lost them. I know I love my girls. I know they are my world. Losing them would mean that I had nothing left.....

I've been trying my hardest to be a better mother with them. I'm trying to not think of something bad happening to them, and just trying to enjoy them now. I find it hard....but I'm trying.

There were nights during the weeks after losing Isaac that stand out in my mind. Nights I would go into a panic because of my girls. One night like I usually do....I reached out to check on the girls and didn't find Zoey. In my half-awake state of mind.....I knew she wasn't where she was supposed to be and I frantically searched her bed and my own.....and on the verge of histerics, I realized that she was staying at her grammas that night.

Another night a few days after Isaacs funeral, it was just Alayna at home with us. Everyone was sleeping and I reached out and touched her to be sure she was there. She was there but her skin was ice cold and she was motionless. My mind immediatly raced back to the first time we saw Isaac after he was taken to the funeral home after he was born. He layed on that little cart covered to his shoulders......his skin was ice cold and he was motionless.
I sat up in bed and quickly shook Alayna awake just to be sure she was alive, she just rolled over and went back to sleep. You have no idea how that moment scared me. I covered her up to make sure she was warm after that......

There were other nights where I found myself almost in histerics when the girls weren't where they were supposed to be. I hate those times.....

In Memory of Isaac James

I remember when I was pregnant with my son, I kept searching for a place that I could belong. A place where there were others who have gone through the same thing as me. People who have been in my shoes and know what it is like to lose a child to Potter's Syndrome. I found a few places, but nothing that really fit my needs. They were either to complicated and not easy to use/access, or they didn't cater to Potter's Syndrome individually.

Another thing I remember after we found out about our sons diagnosis, was searching for answers. I wanted to know all about Potters babies that had already passed. I wanted to know what other women with the same diagnosis went through, or what they did. I wanted to know what they looked like when they were born. I wanted to know how long their pregnancies lasted......I wanted to know everything.  I could never find anything with a lot of specific information on Potters babies, just statistics.  

So I created a website in honor of my son Isaac James. A place that caters to Mothers of a Potter's Syndrome baby, and nothing else. A place for us to share our stories, experiances and a place to just be with others that are going through or have been through the same thing as us. Afterall....only we know what it is like to lose a child to Potter's Syndrome. I may not be able to provide all the answers, but I want to help in any way that I can, to help ease the minds of women who are going through this. Not only by sharing my story, but by compiling information, pictures and stories of other Potters Angel stories. 

MOAPSA was born....."Mothers of a Potter's Syndrome Angel." A place to seek support from other women who have lost a baby to Potter's Syndrome. We are tight knit group now......more and more women are joining sadly. More women are getting Potter's Syndrome diagnosis' and women who have lost a baby in the past are coming forth and offering comfort. I've met so many women and have been able to help so many of them......its a wonderful thing, to be able to help someone through this. Even if its just to lend a listening ear, every little bit helps.

Life continues...

September 18th, 2009 was the beginning of yet another journey for us, although its not as tragic as the one we were just on. On September 18th after 4+ months of trying, I received my first positive at home pregnancy test!! It was no shock, but it was wonderful news!! I remember that whole week after that, I felt like I was walking on air.....nothing could take away my new found happiness. I suddenly felt alive again and that was the most wonderful feeling in the world!!  
As with every baby, there are ups and downs. At about 9 weeks along with this new little one, we hit a rough bump and I thought things had taken a turn for the worst. I started bleeding and found myself going into hysterics at the thought of losing another child. Flashbacks of the day we recieved our horrific news of Isaacs condition and the day I lost Isaac flashed before my eyes, and I was terrified thinking that I was losing this one to a miscarriage. I rested the rest of that day. I layed in bed in the blackness of that room and thought of all that could be happening to my baby. Trent's cousin Joy, who has been a wonderful and invaluable to me during those long months after losing my son, came and sat with me for awhile. She reassured me that everything was okay and we just sat and talked. Then she prayed for me and went home.
I called my doctor that night, and was told to rest and call back in the morning. So I did. I called back as soon as I woke up and they had me come in for an ultrasound to make sure that everything was fine.
I went in for my ultrasound and saw my newest little one, with a beautiful strong heartbeat!! I was so relieved to see that little flicker on the screeen.....baby's heartbeat. It was beautiful!
Baby #4, Alive and well!!

Walking an uncertain road...

The weeks and months after finding out that we were expecting again, were not only filled with happiness but also filled with fear and anxiety. Even though everything looked wonderful at all my ultrasounds, my mind was always filled with thoughts that something could go wrong again. I anxiously waited for my 14th week, to see if everything with the baby looked good. At 14 weeks with Isaac, we first noticed the low fluid....so as long as this baby's fluid looked good at 14 weeks, then I would know that this one didn't have Potter's Syndrome. I had been given an ultrasound at each doctors visit, which we did every 2-3 weeks after my first appointment until we knew that everything was okay. We monitored the fluid levels closely, but we pretty much knew from the second ultrasound that this baby had plenty of fluid, way more then Isaac ever did. At about 16 weeks, we confirmed that everything was okay and the baby had plenty of fluid and we no longer had to worry about a recurrence of Potter's Syndrome. I was finally able to breathe and enjoy this pregnancy!!
At 16 weeks we decided on names we liked and told everyone the wonderful news that we were expecting again. We tried to keep it a secret for as long as possible just because there was still that 3% chance that this one could have Potter's Syndrome too. If this one did have Potter's Syndrome like Isaac.....I don't know that I would have been able to carry to term like I did with Isaac. Carrying Isaac to term even though we knew he wasn't going to live was harder then you can imagine. Losing my son who looked and appeared totally perfect....was almost too much for me. I don't know that I could do that again. I think if this one had been diagnosed with the same thing, I might have chosen the shorter route.....awful I know. I'm just not THAT strong to do it twice :-(
So by not telling anyone, if we would have to for any reason terminate this pregnancy or if we lost this one to miscarriage....there wouldn't be so many broken hearts and tear filled eyes. I never want to see that many people cry in the span of 4 days, because of me, ever again!!


After telling everyone the news, I felt happier. I knew that everything was okay and everything was going to be alright. Sure we still had a ways to go yet before the baby was in our arms, but everything felt like it was going to be okay.
We had our 18 week ultrasound just a few days after Christmas on December 29th, 2009. Again everything looked perfect and we learned that we are expecting another little Princess!! Its not the boy that I wanted, but I'm happy with the results :-)  I'm perfectly happy with my newest little girl "Sadie Belle".
My Beautiful Sadie-Belle
A foot
Head and Arm
Its a GIRL!!!

The Rainbow after the storm.....

A year had passed since we lost our son. Many long months, weeks and days had passed. Isaac's first Birthday and Anniversary had come and gone. After waiting a year and 26 days, and going through 18 1/2 hours of labor......I got to hold my Sadie Belle in my arms. She was perfect and I was in love. I was head over heels and we couldn't have been happier. She was born on May 21st, 2010 at 2:30am. She was 8lbs 4oz and 19 inches long. (I think they measured her wrong) She was born 2 weeks early because of blood pressure problems. She is the sweetest baby! So smiley and happy. So calm and easy going. I love her. Her big sisters can't get enough of her and hover around her all day. Her Daddy loves her, and Sadie has become a Daddy's girl already.

Life is good. Hectic. But still good. There are times that I still sit and wonder why we had to go through what we did. There are times that I still sit and cry. That pain is still there, just not so intense. I still long for my son....I still want him as much as the day that we lost him. Nothing will ever change that. I think of him daily. He's a part of this family, he's still here with us, within all of our hearts. He will never be forgotten.....

So even though we are moving on with our lives.....we bring him with us, in our hearts.

Lilypie First Birthday tickers
Just a few hours old
Family Picture
A day old
One month old
Sleepy Baby
Playing Peek a boo
My Smiley Belle

Two years.....

April 25th, 2011, marks not only Isaac's second Birthday, but it also marks Isaac's second anniversary. Its been a long two years, but we managed to make it. Sadie is growing like a weed and is going to start walking ANY time now. I often sit and look at her and think of Isaac. She is a constant reminder of him. She's laying here beside me sleeping as i type this......such a beautiful little girl, she has brought so much joy to our family. Her sisters adore her!
I came to a point a while back where Isaac's passing no longer bothered me. Sure it still saddens me immensely......but I've come to terms with it I guess. The only thing that does still bother me is not knowing what he looks like, besides the pictures that we do have of him. I want so much to know what he would have looked like at certain milestones, 1 year old, Christmas time, his first tooth, his first step......what eye color he has, does he have his Daddy's thumbs?? These are things that i can only imagine. I sure hope God is taking a lot of pictures, because I want so much to see them it hurts!!
Zoey and Alayna are doing good. They got their very first bunk bed a few weeks ago. They love it and have started putting themselves to bed at night without being asked!! That's how much they like it I guess. Zoey will be turning 5 and Alayna will be 4. Alayna can't wait to be 4 years old, she's been looking forward to it ever since she heard Zoey turned 4 years old. She keeps asking me when she will turn 4. Zoey can't wait for her Birthday, only because she wants to have a Belle birthday cake!! (From Beauty and the Beast)
They don't question me about Isaac at all. They just know that he is their brother and that he is in Heaven with Jesus. They are content for the time being knowing that. I dread the day that they start questioning me more about it. They love to go to the cemetery, to visit "Brothers Special Place". That's all they know it as. We take little trucks over or other little ornaments on special occasions.
As for me and Trent.....We're doing okay. We're happy, although a wee bit stressed with raising 3 kids. Its life though and raising those little girls fill our every day with craziness :D Life is not boring that is for sure!! LOL We've talked about trying again for another boy, but both agree that now is not a good time!! I think we will wait 3 + years if we ever do decide to have another. So check back in about 4 years and see if we made up our minds to try again ;) Until then........all our love, The Disel's

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