I’ve just been sat posting pictures on http://www.facebook.com/freyasstory of our afternoon at Clumber Park with Freya. I called the album ‘Happy Days’ with a tagline of ‘Making Memories’. We look like any other family having fun times with a picnic and a selfie stick, and we were just that. So why is it that I feel a huge sense of sadness looking back over our day? And if I am truthful, even during the afternoon when we walked smiling through the grounds, I couldn’t help but be aware of the small dark cloud following us. It seems that even good days are tinged with sorrow. I wonder if we will ever feel completely normal?
Generally things are good. I’ve told you that we’ve become accustomed to our new ‘normal’, and that actually we are just getting on with life as we would have done before all of this happened. Well almost. We would have been to more places, seen more sights, we would have definitely been abroad for a lovely holiday in the sunshine. We would have made plans without limitations, had things to look forward to.
The thing with Kawasaki Disease is that it is a silent, deadly disease, often pretending to be something it is not. It hides just beneath the surface, choosing to send symptoms to the fore one by one, just to keep the Doctors guessing. Sometimes it chooses for a symptom not to materialise at all, throwing it in for good measure when it’s too late to make a difference. You can think it is gone, and a after a couple of days of relief that the KD journey might be over you start to see the symptoms creeping back; a rash, a fever, something else. And so you are always on high alert, watching closely to make sure Kawasaki has had it’s day.
I wonder though if I will ever just change Freya’s nappy, without checking over her body for any sign of a rash developing. Whether I will stop feeling my heart jump into my throat when I see a spot that could be the start of something. I wonder if I will always have to will myself not to fetch the thermometer every time her little cheeks flush. I wonder if I will always catch my breath when she suddenly cries out, concerned she may be ailing for something that I cannot see. I wonder if I will ever be able to quiet the voice that tells me to be cautious about loving her too much. And I wonder if I will ever be able to watch her sleeping without the thought creeping into my head that she looks as peaceful as she would if she were dead.
I’m sorry if that sounds morbid, and if it’s not the kind of thing that you want to hear, but it is the reality and I promised myself and my followers (those few!) that I would always be candid. It’s how I feel today, and it is just one of the dips on the rollercoaster that is life with Kawasaki Disease. You try to be positive, and focus on all the great things and reasons to be cheerful:
- The inflammation was stopped in its tracks and has not returned
- There have been no return of the most obvious symptoms
- Freya is a happy, contended baby who is thriving; feeding well, sleeping well – all signs of a healthy baby
- The coronary complications are improving at a surprisingly fast rate – right coronary artery has normalised, and the aneurysm in the left coronary artety has reduced from over 5mm during the acute stage to around 3mm at the last echo (1-2mm is the normal range)
You see, I’m not just being a ‘neghead’. I am fully aware of all the things we should be grateful for, and we have much to cling onto that suggests that Freya will recover from this. But (and it’s a big but) as much as the Kawasaki Support Groups on Social Media sites are generally helpful, every day I see posts from parents asking whether anyone has noticed this symptom or that, whether years after KD anyone’s child has had trouble with joint pain, behavioural problems, skin issues. And every post sees replies from tons of other parents saying yes! yes they have seen those symptoms, and what’s more they’ve also seen rashes and temperatures and all manner of other symptoms since their child suffered with KD. Most of the time it is useful to read, and it is a community from which I draw a huge amount of support. I mean, no one can truly understand how this feels unless they’ve been through it. But these kinds of posts are the ones that affect my positivity the most. I try to be logical about it. Mostly I think that we cannot ever know what future symptoms are related to Freya’s battle with KD or just symptoms that she might have had anyway. My other children sometimes get ill, they get rashes, temperatures, aches and pains, eczema; neither has ever had KD. So it stands to reason that at some point in Freya’s life she will get ill, but it is more than likely going to be unrelated to her condition now. I remember one of the consultants making a similar case when we were re-admitted after Freya started bleeding. He said that because of the rarity of Kawasaki Disease, the medical staff were on high alert for weird and wonderful things that could affect Freya, and that whilst they were making the assumption that all of her symptoms were connected to the disease, they were forgetting that she was a tiny baby going through many developmental changes. Perhaps the gastrointestinal bleeding really was just a cow’s milk allergy and nothing else. But even if I wanted to dismiss all of those comments and posts as illogical or poor assumptions, it doesn’t take away the fact that when you have been through this you will always be afraid. The parents posting those statuses are crying out for help; for someone to tell them that they can stop worrying about KD making a reappearance. I don’t think we ever will though. Because we don’t ever want to experience the hell that is Kawasaki Disease again.
When I look back over the last few months, I still can’t quite believe how poorly Freya was. It’s surreal. Perhaps it was denial, a kind of self-defence mechanism? Maybe its just because she is doing so well that it doesn’t seem real looking back now. I look at the photograph of her when she was unrecognisable to me, she was so unwell, and I still can’t believe that it was her. I remember the day the Doctor told us she was a 10 out of 10 on a scale of how critical her condition was. I will never forget watching my baby girl go through test after test; daily blood samples, x-rays, lumbar punctures, ultrasounds, echocardiograms, bone marrow aspiration, MRI, a blood transfusion, a cocktail of drugs and blood products. I just can’t comprehend it. It was not supposed to happen to us, and although I know I should be thankful for where we are now I cannot be at peace with a disease that has stolen so much of my precious time with my daughter. I am fundamentally altered. I think I will be forever changed.