Although I often felt guilty for feeling sorry for myself in the hospital, I think it is only natural for the situation to send a parent a little (or a lot) stir crazy. I know there are many who have to endure much longer stays, but the thing with Kawasaki’s is the uncertainty and never really knowing when it will all end. After all, we had made it home once and ended up back in less than 48 hours later, so you can’t blame me for feeling a sense of despair at times. And don’t forget, only a few weeks before this whole ordeal began I had given birth to my baby. My hormones will still have been all over the place, and not only that but I’d planned how me and my new baby were going to spend our time together and this wasn’t it.
Friday 3rd July 2015, 15:26pm
“Mummy hasn’t had a very good day today. I think they call it ‘cabin fever’. The room we are in is in the middle of the hospital so the view is of the windows on the other side of the building. The sun has been beating through the window since this morning, and despite keeping the curtains drawn across the main culprit, and keeping the fan on full blast, it was unbearably hot. And because it is so hot both you and I have been incredibly irritable.
You haven’t known what to do with yourself. You’ve tried to sleep but woken shortly after. You have wanted lots of cuddles but when I hold you we both end up sweaty and even more annoyed.
I have been feeling really sorry for myself today. Not only am I fed up that you are poorly, but I’m fed up that our lives are passing us by in this hospital. Everyone else is out there in this beautiful sunshine doing all the things we should be doing. I refuse to accept that this is now normal for us.
I have been really emotional. I even cried over your blood being taken today and I must have seen it done one hundred times or more since you’ve been in here. Perhaps it’s my hormones. Or maybe after five weeks in a hospital room I’ve finally had enough.
…I’ve told everyone that I don’t want any visitors today. I’m not in the right mood and I’d end up being horrible to them. No-one has any idea what it is like being cooped up in here every day. Not being able to grab whatever you want to wear, not being able to have a shower, not knowing if the toilet is free. Not being able to get whatever you want to drink, or make yourself a cup of tea just the way you like it. Small everyday things we take for granted…your little finger nails seriously need cutting but…they don’t have any [scissors] here. It’s little things like that that make me feel out of control, and I hate it.”
One of the nurses noticed how low I was, and tried to make suggestions to help me feel more comfortable. I batted back every suggestion she made; I was in that kind of mood. I always felt really guilty about complaining about stuff anyway. I mean they weren’t there to look after me were they, and how selfish did I sound moaning about not being able to have a shower when my baby girl was so poorly. But the nurses said that the care they were there to provide was for all of us, and that my welfare was as important to them as Freya’s. They said that for me to be able to support Freya, I needed to be taken care of too. The nurse that day said she had an idea, and disappeared for a few minutes. She came back and told me that a patient had been discharged from a cubicle across the other side of the ward. It was shaded and cool, with a view of the park and best of all it had an en suite bathroom! I cried like a baby! I had underestimated how important it was for me to feel clean, and like me. Clean hair and a fresh face were my armour.
“…I am sitting by the window holding you in one arm and writing with the other. You are asleep and I am watching the world go by. People walking in the park, cars and buses going about their daily business…Directly in my eyeline across the park is a group of ladies with prams. They’ve got a blanket laid out on the grass in the shade of a big tree. I can see one of the ladies standing rocking her baby in the sunshine. That should be you and me sweetheart.”
I’ll never forget watching those women, wondering whether they even felt the presence of the Children’s Hospital behind them as they enjoyed their freedom with their babies in the sun. It was then that I decided never to take anything for granted, no matter how small it might be. I tried to imagine a time when I might return to Sheffield with Freya for a check-up, and we might sit in that park together, feed the ducks, erase some memories. Not that she will remember any of this; but then that’s why I’m writing isn’t it?
During our time in the hospital(s) I developed a huge amount of respect for the medical staff, from cleaners to consultants. I really got the feeling that Freya was making an impression on the people she met and that they had more than a basic professional desire to see her well. The nurses from our local hospital had called up the ward a few times to ask how Freya was doing, and a consultant from Doncaster had also been in to see us a couple of times. One time we missed him, but he asked the nurse to tell us that although Freya wasn’t with them anymore, she was never far from their thoughts.
“You are certainly making an impression on people my little peanut…All the staff here comment on how cute you are, and what a lovely natured baby you are. You give up your smiles easily and will ‘chatter’ away to anyone who will listen (that sounds just like me!)…Our nurse from upstairs just came to see us. He was genuinely sorry to hear that we are back in here…[The Immunology Consultant] came to see you too. She touched my hand, and I get the feeling that you may have touched her heart…
You are very special you know. I am in complete awe of your bravery and your manner in dealing with all of this…You are a delight. In all respects you are the perfect baby, and it is such a shame that you are having these difficulties little one.
Keep strong, keep fighting. There are bigger trials to come, and we will get through them together.”
The weekend would pass with very little event, but looming ahead of us like a huge dark cloud was Freya’s follow-up Cardiology appointment. We never imagined that Monday 6th July (Day 37) would be a turning point, and the beginning of a new chapter; of daring to dream.