It’s been one of those days today where I’ve been left to my own devices and consumed by thoughts of what might have been. I guess as we move further and further away from Freya’s illness into a world of hope and normality there comes a time for reflection on where we have been. I still can’t believe that this rare disease decided to infiltrate my perfectly normal little world. Unless by some miracle a research project finds the cause of this sinister illness, we will always be left wondering why on earth Kawasaki disease found us and our little girl. Is it our genetics that set Freya up for this fall? What triggered this reaction in her tiny body? Was it rhinovirus, the common cold, that took hold of her too early in her life for her body to handle it in a normal way? Or did she indeed have bacterial meningitis and that was too much for her to take? Was there something else? Another factor, environmental perhaps, that created the perfect storm and turned her body against itself? There has been talk of soy, of carpet cleaner, stagnant water, even the winds blowing from a far off country, but none of these lines of enquiry have yet reached a categoric conclusion. All I know is that whatever it was, it found our Peanut and it changed her.
What if she had been just a week older when she became ill? Would I have given her Calpol to battle that temperature? How many doses would I have continued to give her until I realised we were dealing with something more sinister? Hours? Days? What if I had let her sleep that morning in her hospital cot, not changed her nappy because I didn’t want to disturb her when she had fought so hard to rest? What if I had allowed that stupid locum stop the antiobiotics when she was in the HDU? Would the symptoms of Kawasaki Disease shown themselves earlier? Would they have shown themselves at all? What if my husband hadn’t asked whether the doctors thought she was going to get better? What if he hadn’t suggested she ought to be moved to the Children’s Hospital for more specialised care? What if that Consultant hadn’t been on duty the day he told us we had waited long enough for them to reach a diagnosis? And what if her condition had improved enough on a cocktail of antibiotics that they had decided to send her home? What if she didn’t get that rash; the rash that showed the doctors something they had already discounted?
What if they had carried out a follow-up echo even just one day before they did? Would it have shown what was starting in her little heart, or would it have been clear and thrown them further from the scent? What if the doctors weren’t familiar with the disease or the appropriate treatment? How long might she have waited before the right decisions were made? And if they hadn’t sent her to Leeds for an expert opinion, would she have received the Infliximab that finally told Kawasaki’s where to go? There are so many what ifs, I could go on forever.
Logic tells me that none of these what ifs matter now. The very fact that they are a what if, means that these things didn’t happen, and we can be thankful that Freya showed the doctors the way and that they worked fast to get her the treatment that she needed. I appreciate there are many in Freya’s situation who have not been so lucky, and that I should be grateful for what ifs, no matter how much they torture me. I know that I need to move on, to compartmentalise what has happened and move forward. It’s easier said than done.
And there are bigger what ifs too, what ifs that come from a time before all of this took over our lives. What if I had routinely taken the vitamins the midwife kept reminding me to take? Would I have made her stronger? What if I had breastfed for longer than 6 weeks? Would her immune system have been more able to prevent her body’s reaction? What if I had kept her home in her early weeks to protect her from the outside world?
What if….
There are many reasons to be thankful for things not turning out how they might have done under different circumstances. I mean, what if the Morning After Pill had actually worked? Could you imagine? I would never have had to deal with any of this, but I wouldn’t have had my Peanut. There, I’ve said it. And not many people will know that was a decision I made all those months ago. I can’t lie. When I found out I was pregnant I was devastated. The name of my blog was born from the depression that I entered when I realised my ‘mistake’. Bluemama. That’s what I was. The strapline for my blog used to read “because pregnancy isn’t always rosy” and was intended to be an outlet for sharing my disappointment and fears of being pregnant with an unexpected 3rd child at 40. I didn’t share it, not publicly anyway, because I was ashamed of my feelings and was afraid I would be judged. I may be judged still, but somehow it doesn’t matter to me anymore.
What matters is that for some reason that we will never know – science, nature, some higher power – Freya was coming into this world whether we liked it or not. She rode rollercoasters and braved the Tower of Terror at Disneyland Paris and did not budge (I didn’t know she was with me, or I would have sat those out!). I even went to an appointment at a clinic to discuss my options, but the moment I walked in I knew I was in the wrong place. Ok, so I might have had to give up the big promotion and the dream holiday to the Maldives, but imagine if those things had been influential enough to make me take a wrong turn? Looking back at those times, moments that I felt were darker than I had ever experienced, I can’t help but blush at my stupidity. Of course hindsight is a wonderful thing, and I know I could have had no idea what joy I would have been denying myself had I chosen that path. It seems strange to talk of joy in the midst of all this heartache, but I wouldn’t exchange a minute of what we have been through in the last few months if it meant not having her here at all. There have been times when I wondered if I was being taught a lesson; be careful what you wish for… And I’ll be honest, even though I don’t consider myself a religious person, there is some niggling thought in my mind that He (if indeed He is a ‘he’ and is even there at all) might have done this to make me regret what I almost did for selfishness and a shallow view of what was important in my life. It’s a fleeting thought.
Whatever it was, I am thankful. Even if it was just my own better nature or rationale that helped me come to terms with our impending arrival, Freya was meant to be here. I cannot imagine a life without her in it. She has been on this Earth for 152 days. We had a perfectly healthy and happy baby girl for 51 days before she became poorly, and she was discharged from the hospital, albeit with some complications, 62 days ago. I cannot let 39 days in hospital define Freya’s life, no matter how hard an ordeal it has been. It is a blot on the landscape of a beautiful life, and I cannot wait to see what else this baby can achieve with her strength. This journey has been bitter-sweet, with days like this managing to throw you up and down with each passing minute. But that’s life isn’t it? It is a bitter-sweet journey where you take the rough with the smooth and cherish the moments you do have (even I am balking at the use of 3 cliches in one sentence!). I will learn to count my blessings with each day that takes us further away from Kawasaki Disease. Whilst I feel some sadness at the information I received yesterday, knowing that Freya’s illness is going to be part of our lives at least until her teenage years, I feel I can look forward to a time when cardiology follow-ups are a negligible once-a-year thing that are conducted for caution and nothing else.
I learned something else today too. I have let a promise that I made to myself and Freya when we were in the hospital cloud my judgement. I promised that I would make every second count if Freya made it through this thing. I didn’t mean big bang gestures, I just wanted to make sure I didn’t take Freya for granted, didn’t take this gift of life for granted. So when I’ve done the school run, or sat her in her chair while I did another load of washing or prepared dinner, I’ve felt guilty and wretched for breaking my promise. But today (with the help of a kawafriend) I came to the realisation that we can’t be on all the time. The greatest gift I can give Freya is a normal life, in spite of Kawasaki Disease. And in a normal life, there is balance. There is fun to be had, and chores to be done. There are memories to make, and lazy pyjama days. I hope soon to break free of the cloud that constantly threatens rain. Freya will make sure of that.
bluemama 