Loss parents do lots and lots of watching, waiting and wondering. They watch their living children grow up with a missing sibling. They wait for the inevitable questions from everyone. They wonder why them. They watch the years pass from when they last held their child, they wait for the time to come when they can be together again and wonder why them.
I watch my sunshine and rainbow babies (sunshine is a before loss baby and a rainbow is after loss) grow and develop their own personality. I watch them play and wish that there was three of them playing instead of just the two.
I wait for the pain to release it’s hold on me. I know this will never happen but the hope keeps me going. I wait for the day that my children ask more questions about their brother.
I constantly wonder about my Milo. I wonder, if he had had surgery, would he have lived longer. I wonder if he was in pain but didn’t realise it as he had been in pain constantly since birth. I wonder how life would have been if he had come home. I wonder about who he would have been. Would he been able to talk or walk with a lot of help. Would he have had a laid back personality like his dad or more fiery like me? Would he have developed to a point where he would have been able to start school and make friends?
Being a loss parent gives you a sense of unity within the angel community. These are other parents who totally understand how you are feeling. They also get your frustrations with non loss parents who say silly things for the sake of saying something when faced with the loss of someone else’s child.
Meeting with another loss parent for the first time is actually easier than meeting any other stranger. You already have something in common and there is no need to have the pity head tilt that someone is unaffected by child loss will always use when you tell them about your child. They also get the quick mood swings and your need to cancel plans at the last minute.
There are many places to get the feeling of unity. Some loss parents prefer social media while others benefit from face to face groups. There is a local child bereavement group to me but I have never been and now I feel that I can’t go as it would take me right back and that is not somewhere where I wish to be currently be.
My unity comes from my many loss/rainbow baby groups that are based on a couple of social media sites. My first is PAIL. The members there were the first people I ‘met’ when I was in my darkest days. They understood the feelings and they just got the need to say my son’s name when no one else would listen. The PAIL mums took me in and they were so welcoming. I now co-admin the group and give that support to the new bereaved parents. I hope I offer comfort.
I also have a couple of groups on a different social media site to PAIL. I find I don’t use the angel mum groups as much so more as I have my rainbow now and she is a large part of my life and new angel mums don’t need to hear about living children when they just lost theirs.
From these groups I have found mums who all lost their beautiful babies at or around the same time as I lost my Milo. Having people at the same point of this journey is a great comfort to me. They totally get it and we had our rainbows around the same time too which also helped as a rainbow pregnancy can be very mentally challenging.
Many, many of these are shed by not only loss parents but also by the grandparents, family, friends and some people who are told the story of the angel.
They are not something to be hidden but often they are. Sometimes they take a long time to dry and sometimes they appear out of nowhere, even when you feel you are having a good day. However much you cry or don’t is not wrong. I have met some loss parents who are able to talk about their missing child and not let one free but then there are others who just hear a mention of their child’s name and they are sobbing.
I am glad I have moved on from the unstoppable tears. They embarrassed me as I rarely show emotion and they caused people to want to give me hugs and I don’t do hugs.
I cried so much in the days after losing my Milo, once the shock and the numbness eased off. I had days where I just wept all day. I would calm down and then someone would speak to me and then they would start again. I had horrendous headaches from them.
Seeing my dad sob over his grandson’s coffin is one image that haunts me even now and will do until the day I join my son. One of the nurses sat and cried with me the night my Milo died. She needed more consoling than I did, ( I was very numb). It showed me just how much she loved my boy and how much he would be missed by the staff. She told me that night that she doesn’t often work with the babies who come onto the ward but there was something about my son and she always asked to be in charge of him when she was on shift.
Some loss parents don’t go to have a subsequent child (rainbow). They just can’t face the thought that the loss might happen all over again or feel unable to deal with the stress that a rainbow pregnancy brings. Being pregnant again after a loss is so difficult. Every little twinge and your mind goes straight to it’s all going wrong.
Other loss parents go on to have two or three rainbow babies (no matter how many babies are in between their birth and their angel sibling they are still a rainbow). Neither way is wrong and anyone who comments negatively is a numpty.
I did go to have my rainbow baby. She was born almost two years to the day of when my Milo was born. His birthday is the 6th and hers is the 10th (such good planning).
I always say she is a subsequent child rather than my second child as my Milo was and always will be my second child. She is also not a replacement for my boy. No one could do that.
I do worry about her asking what the reasons were to have her, if it was only because her brother died. The honest answer is we would never have had her if her brother was either well or alive with all his issues. We would never have been able to cope with our eldest, Milo and an extra child. It wouldn’t have been fair to any of the children if we had done that. Milo would have been such a high needs child that his brother would have missed out on so much because I would have been dealing with his brother or he wouldn’t have seen me much as I would have been in the hospital with Milo. The thought of bringing another child into that situation fills me with fear.
You may find that your parenting style changes considerably once you have lost one of your children. You may have been really relaxed before but are now what is considered to be a ‘helicopter’ parent, watching your child’s every move like a Red Kite or you could have been really protective and now have loosened the reins a bit because what is the worst that can happen when you have had to say goodbye to your child.
A change in your parenting style isn’t wrong, just as your parenting style staying the same with your other children isn’t wrong either. You do what you need to do to get through.
My parenting style definitely changed loads between my eldest and my youngest. He was bottle fed, in a pushchair constantly, in his own room from five months, slept away from home at five months and at nursery at twelve months. My daughter on the other hand was breast fed, co sleeps (even now at three years old), wrapped as much as I could, never spent a night away from home and she will be going to nursery but I couldn’t face sending her at twelve months. He also napped in his moses basket or cot from birth whereas her nap place was my arms or lap. I barely put her down for the first three months of her life. When people wanted a cuddle they almost had to pry her out of my arms but I freely gave over my eldest son.
I do feel bad about the differences but I can’t go back and change it unfortunately, just like I can’t go back and change the loss of my boy. You never know how you will be after a loss and how much you can cope with.
Moving onwards is not a well liked concept within the child loss journey. How can you move on from your child? How can you leave behind this small person that you love with all your heart?
One of the most well intentioned but sadly wrong thing that someone outside of the child loss experience does is telling a grieving parent to move forward from your grief, pain and loss. The non loss person might be thinking that they are helping with their rubbish platitude but moving onwards is not really something a loss parent does. You just learn to deal/cope with everything and never get over the loss.
How have I moved on?
My biggest challenge in going forward was when I had my rainbow. Having her meant that everything was going to change again and that there would be someone in my life who means the world to me but that would never meet my Milo. Having her also made me face my demons about being in hospital and giving birth. She helped my thoughts move on from birth = poorly child.
I also try and help other loss parents as much as I can. This is predominantly on line as I find it easier to not be face to face (social anxiety more that an inability to cope). I find helping someone find their feet again in this new and painful loss journey helps me keep looking forward rather than back at my loss and months of darkness. Of course helping someone who is right at the start can bring back the bad memories but they also help me see just how far I have come since losing my Milo.
After losing your child you will never be the same person you were again. You may want to be but that won’t happen. Your very being is intrinsically changed once you experience this type of loss.
You have to learn to embrace the new you. You may not like her to begin with but sadly she is here to stay. Some of the changes might be huge like an inability to see or speak to other children aged the same as your angel or small like a constant sad look in your eyes.
You may also find that your tolerance level has dropped. Mine certainly did. Before if people made mistakes in their pregnancy I wouldn’t say anything but now I can’t stop myself. I try not to use my Milo as an example but if me saying something means a baby is saved then I will talk about his loss until the cows come home. You may also find a want to help people who are in the same situation as you.
I am more willing to talk to different people now. I suffered with major social anxiety before losing my Milo. I would hardly strike up conversations with anyone. Having to meet nurse upon nurse and different doctors all the time made me have to chat to people and so that has now transferred into my life.
I also now soak up every available moment with my living children. I don’t want to miss a moment of them growing up. I used to never be bothered if my eldest went to stay at a grandparents house but now I want him under my roof at all times.
I have also found that my protectiveness of my eldest as increased but I allow my youngest an awful lot more freedom than her biggest brother had at her age. I used to follow her brother around when he went to soft play or at the park but I now sit with a coffee and chill out while she has fun. She is safe and knows where I am if she needs me. She is also a lot more confident in new situations.