Take strength from those around you,
When you have none left yourself,
We will help carry your burden,
We are here to offer help,
And although we can not ever know,
What you are going thru,
We are here to offer comfort,
When you cry we cry too!
*She posted it at a great time! Sure I teared up reading it but it's perfect for the current situation
Tuesday, 19 July 2011
Fake Smiles seem to be the norm for me
I have read so much about Holoprosencephaly, Trisomy 13 and other genetic conditions but I don't understand how all the parents seem so strong. I constantly have people saying "you seem so strong", "I don't know how you do it". Truth is I'm not that strong and really its Hannah who is keeping me going. Its true you don't know the bond between a mother and child until you feel the movement inside. Hannah constantly tells me shes still here, shes still fighting. If I could stay pregnant forever just to keep her alive I would. There's no way to prepare yourself to bury your child, let alone a baby. I am already grieving. In some ways I think its grieving the loss of my other children, as well as the loss of my "perfect pregnancy". Holoprosencephaly is such a rare thing I am the only one in my group of friends who is experiencing. I have lost a lot of friends only because I believe they just don't know what to say. Its difficult to celebrate with friends who are expecting unless they are late in their pregnancy. Its also difficult for me to talk and be around friends with babies, or even hear about how their children are progressing. My best friend is understanding enough to allow me to be a part of her children's life knowing that in many ways I look at them as if they were my own. My life feels like its appointments after appointments. It shut down after them it seems. It is difficult for me to talk to people as all I do is cry. I get about half way home from appointments and usually cry, or its just waterworks when I get home. I know people notice I'm not happy bubbly Clare, but really I cant keep hiding my emotions.
Holoprosencephaly....WHAT?
No expecting parent ever expects to hear that the child they are carrying has something wrong. We always think it happens to other families, other moms. We all want to believe our children will be prefect.
Up until my 18th week I believed I was having a normal pregnancy, the baby was growing, my belly was growing it was normal. I went into my 18 week ultrasound believing everything was normal, things quickly changed when the ultrasound technician said she needed to go double check some things with the radiologist. I caught a quick glimpse of the screen when she was gone thinking maybe it was routine. She came back and took a few more pictures, printed mined then sent me on my way.
The next day I received a phone call from my Dr. He wanted to see me ASAP. Instantly I knew something was wrong. Motherly instinct kicked in. Friends kept telling me to think positive, or that maybe he just wanted to tell me the gender. I went to the appointment the next day and could tell by my Dr's body language it wasn't good news.
He proceeded to tell me that the baby had a condition he had never heard of. I was the first woman he has ever had as a patient to have a child with this condition. He told me that the baby had Alobar Holoprosencephaly, Hypotelorism, and a Cleft lip and palate. My Dr explained to me that Alobar Holoprosencephaly is where the brain didn't merge when it was supposed to, so instead of right and left brain baby only has one part. Hypotelorism meant baby's eyes are to close together. Due to the brain not developing properly the baby's mid line on her face isn't straight which caused the cleft lip and palate, as well as her eyes being to close together. Needless to say my motherly instinct was right. I left the appointment told specific family and friends, who I knew would support me, then faced the hardest part, telling the father. We were in the middle of moving at the time so we had company and help, and decided to hide exactly what it was for the time being. We only stated that the baby had some complications.
My Dr arranged for me to see a specialist and by the end of the week the appointment was made and the dreading started. All my life I have wanted to be a mom. I've had miscarriages but never had I gone this far into a pregnancy. This baby is still here for a reason was the only thing that kept me going as I did research upon research. The specialist appointment came, I had an ultrasound and it was LONG.
Over an hour later, a Dr came into the room to double check all the pictures and to tell me further explain the condition and to give more detail. I remember most of what he had told me, I had already figured out in my own research, but it was relieving to hear from a Dr. He asked if I had any questions and the only one I had at that point was "What's the gender?" the Dr replied I was carrying a little girl. As weird as it was knowing I was going to have a daughter made things seem better at least for a little.
After the ultrasound I met with my team. It was my specialist OBGYN, a Dr, a Pediatric Dr, Genetics counsellor, and a Resident Dr. Each explained the part they play in my team. My Specialist explained further detail of my daughters condition. Needless to say it was a rough day, and I had had to remember everything and go tell the father.
I had a small procedure done called an Amniocentesis, basically they take some of the amniotic fluid and test it to see what caused the condition. After that day it was constant good day, bad day etc. God does things in mysterious ways. I still don't understand why MY daughter has such a lethal condition, its a constant question "Why me?".
Up until my 18th week I believed I was having a normal pregnancy, the baby was growing, my belly was growing it was normal. I went into my 18 week ultrasound believing everything was normal, things quickly changed when the ultrasound technician said she needed to go double check some things with the radiologist. I caught a quick glimpse of the screen when she was gone thinking maybe it was routine. She came back and took a few more pictures, printed mined then sent me on my way.
The next day I received a phone call from my Dr. He wanted to see me ASAP. Instantly I knew something was wrong. Motherly instinct kicked in. Friends kept telling me to think positive, or that maybe he just wanted to tell me the gender. I went to the appointment the next day and could tell by my Dr's body language it wasn't good news.
He proceeded to tell me that the baby had a condition he had never heard of. I was the first woman he has ever had as a patient to have a child with this condition. He told me that the baby had Alobar Holoprosencephaly, Hypotelorism, and a Cleft lip and palate. My Dr explained to me that Alobar Holoprosencephaly is where the brain didn't merge when it was supposed to, so instead of right and left brain baby only has one part. Hypotelorism meant baby's eyes are to close together. Due to the brain not developing properly the baby's mid line on her face isn't straight which caused the cleft lip and palate, as well as her eyes being to close together. Needless to say my motherly instinct was right. I left the appointment told specific family and friends, who I knew would support me, then faced the hardest part, telling the father. We were in the middle of moving at the time so we had company and help, and decided to hide exactly what it was for the time being. We only stated that the baby had some complications.
My Dr arranged for me to see a specialist and by the end of the week the appointment was made and the dreading started. All my life I have wanted to be a mom. I've had miscarriages but never had I gone this far into a pregnancy. This baby is still here for a reason was the only thing that kept me going as I did research upon research. The specialist appointment came, I had an ultrasound and it was LONG.
Over an hour later, a Dr came into the room to double check all the pictures and to tell me further explain the condition and to give more detail. I remember most of what he had told me, I had already figured out in my own research, but it was relieving to hear from a Dr. He asked if I had any questions and the only one I had at that point was "What's the gender?" the Dr replied I was carrying a little girl. As weird as it was knowing I was going to have a daughter made things seem better at least for a little.
After the ultrasound I met with my team. It was my specialist OBGYN, a Dr, a Pediatric Dr, Genetics counsellor, and a Resident Dr. Each explained the part they play in my team. My Specialist explained further detail of my daughters condition. Needless to say it was a rough day, and I had had to remember everything and go tell the father.
I had a small procedure done called an Amniocentesis, basically they take some of the amniotic fluid and test it to see what caused the condition. After that day it was constant good day, bad day etc. God does things in mysterious ways. I still don't understand why MY daughter has such a lethal condition, its a constant question "Why me?".
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