Benedict has made me realize that I must face life ~ embrace it; the pain and the joy of it. Acceptance is a wonderful thing which makes the loss of him a little more bearable. I heard a quote recently which I have found helpful, "ACCEPT SUFFERING. It can stretch your heart to make room for greater love and joy."
We were so blest to have him for those 37 weeks (in utero), and 24 hours and 13 minutes (in our arms)! We made the most of his time here on earth, we have no regrets. One reason for this is that we planned so thoroughly all the things we wanted to do well before he was born. For me all this planning was almost a compulsion! What I wanted to do, was to save his life. As I couldn't do this, I felt that at least I could do SOMETHING for my baby! Planning for Benedict's short life and eventual death was a very healing process for me.
Here are some of the things we did...
~After the diagnosis, one of the first things we did, (as soon as we found out the sex of our baby and named him) was to make up these A5 'baby announcements' on our home computer. We then began a HUGE mail out to friends, relations, everyone we could think of. We included a holy card of St. Therese the Little Flower, to encourage people to pray for us.
~I also began sewing fairly soon after diagnosis. I made; a patchwork quilt for Benedict (I have made quilts for my other children too), two hats (which were both way, way too big), and two matching polar fleece blankets (one which we used while he was alive, and still have now - and an identical one which we wrapped him in for his burial).
~We bought a gold mizpah coin, which breaks into two pieces and says, "The Lord watch between me and thee, while we are absent one from another". I didn't realize that I would really want to wear it, but I do. So now Benedict wears one piece and I wear the other.
~My sisters arranged an informal baby shower while I was in hospital. We had a nice supper and they bought appropriate 'memorial' type gifts, like rosary beads etc. One of the nicest things was a box in which were placed many letters to Benedict, written by his cousins, aunts and uncles etc.
~Benedict's Godmother, our good friend Eilin, made him a Baptism Candle. It has his birth, baptism/confirmation, and death dates on it, as well as a picture of St. Benedict and the symbols for baptism and confirmation. We will light this again on special days like his birthday, Christmas and Easter etc.
~We picked out the hymns and readings for the funeral, and typed the booklet, so that all we needed to do after he died was add some photos and his birth/death dates.
~We went to the cemetery (this was a HARD one), and booked his plot. Mark had several discussions with the funeral director, explaining that we wanted to have Benedict at home the night before the funeral etc., and everything went very smoothly.
~We arranged for a lady from our local craft market to come to the hospital after Benedict was born and do imprints of his hands and feet. She had only done healthy babies before, so she was a little nervous, but she did a beautiful job and even drove 1 1/2 hours to deliver it to our home. I will post a photo when I get one.
~We asked my father to make Benedict's coffin. He was the third grandchild (all babies) Dad's had to make a coffin for. We all hope it will be the last (especially Dad). The coffin was a beautiful white wooden casket, and Dad had carved "Benedict Oliver" of little wooden letters and this was on the lid.
~We bought Benedict a teddy, and he was given another. We thought it was important to have something that was his which we could give our children, so they have something to remember him by as well.
~We bought lots of film (black and white, and colour) and made sure the video camera was working. We made a list of all the photos we particularly wanted to take so that we wouldn't forget any. I can't stress how important the photos are. I don't know that I would be able to picture his face without them. That would be devastating.
~We arranged that a priest who is a friend of Mark's family would be able to attend the birth and celebrate the funeral. He did such a beautiful job, we really felt that the spiritual side of things was SO important.
~We also made a Birth Plan, which I've posted here. I can't tell you how important this was. I printed out several sample Birth Plans from 'Carrying To Term Pages' (see links) and took different ideas from each one to make our own. This laid everything out on paper with no confusion between the medical staff and us.
Birth Plan for Benedict Oliver
Benedict has been diagnosed with anencephaly. He may die before, during or shortly after birth, but he may also live for several days. We mean to make the most of whatever time we are given with Benedict, and we ask for your help and support in accomplishing this.
Some of the things that we think will help us through this difficult time are listed below. However, if you have any other suggestions, please let us know. We know that circumstances beyond everyone's control may prevent or change some of these things, but we thought it would help all of us to have this down on paper.
We would like our son to be referred to as Benedict.
Due to the complication placenta previa, Benedict will be delivered by cesarean. We are happy with this method of delivery, as we feel it will be the safest for Benedict and will give us the best chance of some time with him alive. We would like Mark to be present at all times, and Maggie (midwife) if possible. Teresa would like to have epidural anesthesia if possible. She would like the screen lowered just before Benedict is delivered, so she can see the birth.
As we are Catholics, we would like Benedict to be baptized immediately after birth. We will have holy water with us, but any water will suffice. If Mark is unable to do this, then we ask that one of the attendants do so by pouring a little holy water on Benedict's forehead (or face) while saying the words "I baptise you in the name of the Father and the Son and of the Holy Spirit, Amen" This Baptism is very, very important to us. We also hope to have a priest available shortly after delivery to formalize the baptism and also to confirm Benedict.
Since Benedict is going to be with us for such a short time, we want every second possible with him in our arms, beginning from the moment of his birth. Teresa would like to hold him immediately, especially if she won't be able to while the incision is stitched. Teresa would like the cesarean repaired as quickly as possible hopefully with Mark and Benedict still in the room. Please delay any procedures that can be put off until later. We ask that any necessary procedures be done with Benedict in our arms. Benedict is to remain with us at all times.
If the diagnosis of anencephaly is correct, we request only temporary assistance to initiate Benedict's breathing, and after that, comfort measures only. (Note: if the diagnosis was incorrect, take whatever medical measures are necessary, but please keep both parents completely informed)
If possible we would like a single bed room.
Should Benedict live for several hours, he is to receive some kind of nutrition. Our first preference is breast milk. If Benedict is unable to breast feed, we would like to tube feed him expressed breast milk. (N.B. We did not end up tube feeding, rather we fed him expressed milk on a spoon. At the time I felt it was more appropriate and I don't believe he was hungry) Teresa would like assistance with expressing.
Teresa would like advice on appropriate pain relief so she can enjoy Benedict while he is alive, and then cope with grieving and his funeral etc.
If Benedict dies during our hospital stay, please notify staff members who will come into contact with us. Please allow us space to grieve without abandoning us. Please do not take him from us after he dies, we will tell you when we are ready. We would like to take him home with us for some time, even if he has died.
We have brought clothing for Benedict which we would like to dress him in. We would also like to bath him at some stage.
We do not know at this time when we will want to call family members and have them come and be with us. Please help us with phone calls and getting visitors in at any time, as time will be of the essence for us, and we do not want to have any avoidable regrets or missed opportunities.
If Benedict does not die during our hospital stay, please give us advice on how to feed him and care for his head at home (with dressings etc.). We would really appreciate your follow up care, if we are fortunate enough to have Benedict at home while he is alive.
This is a very difficult time for all of us, including you, as you work to support us and care for us throughout this part of our lives. We truly appreciate your help and support, and ask that you understand the varied range of emotions we may experience. We also appreciate and find great comfort in your expressions of grief, so please do not hesitate to cry or be sad in front of us, if that is how you feel. We would like you to join in our joy and sorrow at Benedict's birth. Please feel free to approach us with any questions you may have.
We have tried our best to prepare for this short time with our darling Benedict, and we want to be able to spend as much time with him as possible. Thank you so much for helping us and supporting us through this celebration of our son's short but precious and meaningful life.
Keepsakes Requested
To help us celebrate and remember this special time with our son, we would like to keep mementos of his life. The following list includes some of these and other things we would like to do. We are open to other suggestions as well.
Bassinet card 
Prints of hands and feet 
Molds of hands and feet (we will have kits) 
Hats 
Baby blanket 
Photographs 
Video 
Lock of hair (if he has any) 
Hospital ID bracelets 
Video of bath 
Signatures of staff who cared for Benedict Oliver (we will supply a book)