Met with Henrietta again today and want to write this now (in the afternoon) before I forget what I need to tell myself. My baby, Ellie, is sick. I love her more than anything but I cannot change what is and I am not the first person to go through this. Henrietta is right, I need to not go looking for the information, the numbers about this disease, etc on the internet. The doctors know what they are doing and I have to trust them, despite being out of control. I can’t help Ellie the way they can, I am not her doctor. I am her mum and all she needs from Lee and I is love and unconditional support, whatever the outcome. I can’t support other women in this, at least not now and their stories, their experiences are not ours. The science may be the same, but even if exactly what happened to their kids happened to ours, the experience is different. I am Naomi, Lee is Lee and Ellie is Ellie. We are our own people, with different strengths and personalities. These women have given me a lot already, which is hope. They can’t change my fate, just by giving reassurance. I have to look to the RVI to help us and if they can’t, they tried. I know they will do everything they can.
How can I help Ellie? The truth is, all I can do is love her and talk to her. I can eat properly and sleep and help her to grow, hope that she is strong. I can be her advocate and fight for her and if she can’t fight. I can hold her until she falls asleep for the last time. Grieving now will not help because it is causing pain that doesn’t exist yet. She may not die. I will continue to cry and be scared, I will have to think about births and funerals but death for her is not a certainty so I need to remember that. Her life is not guaranteed either but I will NEVER regret her. What I need to focus on is the pleasure I have had from her so far. I can’t always do that but I will try. Our lives will be hard either way. With Ellie, we will always live day to day which I am slowly learning to cope with. Without Ellie, life will go on and I will never love her any less but I will grieve and then my life will have to continue and I will tell our future children about their sister and how amazing she really was. To waste my life in self pity if Ellie lost hers would be wrong, her life should be celebrated, however long it is.
Don’t focus on future children. We will try again but I am 23. In the worst case scenario, Lee and I will lose Ellie but we will have one another and she will always be a part of our life. Before I focus on future children, I need to know the outcome and if death is the outcome, I need to grieve, to travel, to return to normal life, to study and to be me. The me that used to sing, and play piano, and enter silly charity competitions at the golf club, and go to the gym. I will still be Ellie’s mum, even if she isn’t here with me but I am myself too, and I have forgotten that through the pregnancy and forgot who I am. I will never be the same person, but I will be stronger and if Ellie cannot be here, I will do everything that she couldn’t so it wasn’t for nothing. Even though trying again will be hard and we have obstacles most couples don’t, even though we are ready for a family, we have time and I need to prepare myself for the emotional implications. I will still be young at 25 or 26 and much stronger after a year or two of Lee and myself just being us. Another child will not replace Ellie but it is important not to jump too quick to try and have the baby we lost because that won’t work. We need time to adapt, so that another child can be love for themselves, and not just to fill a void.
I need to help myself too. I am almost used to no structure now but I need to concentrate on positive things, doing German work, playing piano, singing etc. Ellie can hear when I sing, it’s good for her and she likes music. We have 5 weeks left together and rather than panicking about them being over, I need to make memories to take with me, just in case. I don’t want to look back and think she brought me misery and pain. It is a terrible situation but there are positives in it too because we have loved, love and will love her, she loves us and will love us and she has given Lee and I the kind of love and appreciation for each other that just doesn’t happen to anyone. Ellie’s life was never in vain, she was wanted before she was conceived, and regardless of the outcome, will be loved. While I need to not think about life without Ellie right now, I know there will be if that is what happens. I don’t want life without Ellie, nor do I want her to suffer in any way. However, if there has to be a life without her, I won’t be alone and will take comfort in the love she has brought into our lives.
Ellie might die BUT she isn’t dead. Her condition is serious but things can be done. I am not weak for being scared, or for crying but for every time I cry and feel sad, I will make the time to be happy when she has the hiccups or kicks or moves so the disease doesn’t beat us. I will continue to be terrified because it is scary, but I will also be excited to meet her. I’ll write and take pictures so whatever happens I always remember how happy we were, through what was happening, to be her parents. Even if she leaves, we will still be parents to Ellie, forever. That can’t change now. Love doesn’t stop at death. We will talk about her, to family and friends, and Ellie’s siblings and her life will be carried forward if she isn’t here.
So, to remind myself: it’s ok to be happy and it’s ok to be sad. Don’t try and be strong for other people except Ellie, Lee and myself. We are our own family who needs to support one another. Others can support us and we will be thankful but for now, we need to almost be a bit selfish and think only about the three of us. If I need to cry, that’s fine but take pleasure out of Ellie’s life, while she is here. Don’t convince yourself she will live or die, just be prepared that death may happen but hope is still there and nothing is certain. We just don’t know. Trust the doctors, and don’t try to analyse kidney sizes, operations, statistics, etc. Ask the doctors questions about things they know, such as what will happen immediately after birth but don’t seek reassurance they can’t give yet because it will make you feel worse. Prepare for the birth. There are other people to sort other events that may or may not happen. Do normal things, and try to enjoy the last month of pregnancy with this wonder baby. She is fighting to be here so we have to do the same. Be her advocate and her mum, love her unconditionally but if the time comes when it is too much for her, know that we tried and she knows she was loved. Remember in six weeks, that today Ellie was happy and so were you when she kicked and you spoke to her and played her ‘Crocodile rock’ or something equally lame. Don’t grieve until you need to and don’t grieve for the pregnancy or baby you never had because they don’t exist. They never did and never will. Ellie existed, this pregnancy existed and for all the pain, the physical aspect has been easy and filled with happiness too. While other people focus on pram buying and nursery colours, we have been sitting talking to our child like she was here, telling her daddy is silly and mummy loves Kylie Minogue. That is what Ellie needs now, not a cot.
When life gets too hard, read this. Ellie is the ill one, not me. She needs us and what she has to go through is worse than anything Lee and I will face. She is our hero and our blessing and nothing she does will disappoint us. I need to look after me to look after her and take strength from that. If she survives, she will need you to hold her hand and sing to her through dialysis and all the other nasty things. She will need to know we will do anything to protect her.
We are scared but there are good things in life, we are not bad people or being punished and Ellie is proof of that. Other babies have this too and she is not paying the price for anything we did. This is nature at it’s cruellest and that is the sad fact. Ellie is a blessing, not a punishment. Ellie is the best choice we have ever made.
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