Saturday 20th June 2015, 23:55pm
“Nothing much to say today sweetie pie. Very uneventful day. I’ll be honest, I woke up feeling pretty miserable and angry at the world, and so I resolved to spend the day in my pyjamas with the curtains closed.”
We had arrived back at the Children’s Hospital by ambulance late on the Friday so didn’t get to see any of Freya’s doctors. I remember feeling quite abandoned. I felt betrayed; like the doctors had all known what was coming but chose not to prepare me. I now realise that wasn’t the case. Freya’s doctors knew that her situation was serious, but not being cardiology specialists didn’t feel it was there place to discuss it with us. That’s why the sent us to the specialists to ensure Freya received the proper care, and so we could all truly understand the extent of her condition.
The Thursday had been all the harder to deal with as my husband was away on business that day, and wouldn’t be returning until Saturday. I felt it was unfair to contact him while he was away, knowing that he would feel helpless being so far away. So I held onto it until my mother-in-law arrived for a visit and I couldn’t stop myself from falling apart, despite my best efforts to shield my family from my real concerns. I arranged for my mother-in-law to sit with Freya at the hospital on the Saturday so my husband and I could go out for a meal to discuss what had happened in Leeds.
As was usual over the weekends, there was very little activity. That created a solitude that was unhealthy for me given the recent events, and I began to come apart at the seams.
Sunday 21st June 2015, 17:07pm
“I hope you are here to teach me a lesson about faith, because if I lose you to this illness I know that I will never believe in anything ever again. I’ve reached a point where I can’t even begin to trust that everything will work out okay, because I don’t think that I can face the disappointment. I haven’t given up on you sweetie, but I’ve given up on hope. Daring to dream feels like a bad [omen]. Perhaps this is a lesson to teach me what real drama is. All the thing that have made me angry, sad, hurt in the past were nothing compared to this. Nothing else could hurt like this does.
I took a beautiful photograph of you today, but I can’t shake the feeling that that photograph is going to haunt me forever. I’ve been holding you in my arms for 2 hours now, and I don’t want to let you go.”
“I am really struggling tonight sweetie. People tell me i need to be positive, but I feel so much pain I can barely breathe. I want to believe you can fight this and that your heart will get better, but everything I read suggests that your chances are poor. If this illness doesn’t get you now, there’s a chance the complications with your heart will get you later. You are too tiny to fight this.
I wish I could fill this journal with encouraging words so you can see that I always believed you would get better. Tonight I fear you will never get to read this. I am consumed with thoughts about losing you, and torn up by fear that I will wake one morning and find you dead. Every noise, every cry, every wriggle I am jumping thinking something bad is happening.
I have never felt fear or sadness like I am feeling at this moment. I have no idea how I am supposed to handle this. Every time you smile, my heart breaks a little more. I could not bear to see a day where I wasn’t greeted with that smile. You have been here for only 10 weeks and yet I can already see what an amazing little girl you are. I need you to get through this and live a long and happy life because I know you are going to be special.
I am not only scared of losing you from my life, but I am petrified by the unknown, and by how suddenly I would lose you if the worst were to happen. I am scared that I could lose you right in front of my eyes and there would be absolutely nothing I could do to protect you. If only love were enough to keep you safe; the love I feel for you would protect you from anything. I don’t think I could live a life without you in it. You have made me whole. Without you I am nothing, I am worth nothing. The person I was before you came into my life is not someone I want to be. I can only exist in this world whilst you are a part of it. You are the best of me sweetpea.”
The next morning the doctors would notice a marked change in my manner. In the weeks before our transfer to Leeds, I had been inquisitive and challenging; the doctors knew they needed to come armed with information and one said they had a lot of respect for me for the amount of research I had done, and how much interest I had shown in the full details of Freya’s condition. That morning (Monday 22nd June, Day 23) was different. I had nothing left to give. No amount of questioning was going to change the fact that my daughter was forever changed. It didn’t matter to me anymore. The doctors commented on how well Freya looked and I nodded, whilst inside I was screaming! Who cared what she looked like on the outside? On the inside she was broken. My changed behaviour would earn me a referral to the hospital psychologist who I would see the following day.
Writing about it tonight brings those feelings flooding back as if it were happening now. Back then I would never have believed that I would be sat writing a blog whilst my daughter slept upstairs. I would never have believed that I could feel any different than I did in those dark days. Some days are brighter than others. Mostly we just get on with daily life, I mean you have to when you have children don’t you? I still have to listen to tales of Minecraft and complain to my daughter about her untidy bedroom. I have ironing to do and meals to cook, and find that I can take my eyes off Freya for long enough to do all of those things.
Tomorrow we are off to Leeds for Freya’s 3rd follow up echo. The first following our stay up there showed a 20% reduction in the most badly affected sections of Freya’s coronary arteries. Even the Cardiologist remarked aloud, “Wow!”, when she took the measurements. It was more than we could have hoped for so soon after her diagnosis and I wept with relief. The next scan showed no change, however that was to be expected and it could take 2 years for us to understand the long term effects on Freya’s heart. Tomorrow we also hope to secure a more robust plan for Freya’s medication. Our GP is not willing to prescribe aspirin for an infant as young as Freya despite the necessity for it, so we are currently battling to get a better solution than hours of travelling to pick up a prescription whenever we run out. It is a hurdle we could really do without.