My New Year post is a little behind schedule this year, but it has been a busy couple of weeks, with a trip to London, Christmas, a wedding and New Year crammed into a short space of time. And not only that, but 2015 was a pretty damned big year for me; one that required appropriate reflection.
Towards the end of 2014 I had begun to feel comfortable in my own skin for the first time in a long time, if ever before. I had battled for the latter half of the year with a lot of negative thoughts and feelings towards an unplanned pregnancy that was going to ruin my fun, my career, my life. But just before Christmas of that year, I had reunited with some old school friends who, coupled with some professional counselling, helped me to reach an understanding with my past, appreciate my present, and look forward to the future. My life wasn’t over, it had just been thrown a pretty big curveball, and it was something we could learn to live with, perhaps even to enjoy. Before my catharsis, I had believed myself an unlucky person. Of course I realise now that it wasn’t really the truth, and that my old friend ‘Ant’ was dominant at the time and had stolen every ounce of reality I had. She was determined to make me wallow in the darkness of this life that I hadn’t counted on, but I broke her spirit and ended 2014 triumphant.
On the 29th December 2014 I posted a blog titled ‘Metamorphosis’, which was the first blog that I publicly shared on Social Media, no longer concerned about hiding behind the mask of ‘Bluemama’;
“…2015 is a year of new beginnings for me in more ways than one. It is the year my family will be complete, and the year that I will allow myself to feel truly complete. No longer half a person living half a life, missing perfect moments whilst over-analysing the past. These past few months have shown me a glimpse of the joy that can be felt through living this precious life in the present…”
I believed every word, but I wasn’t ‘cured’. Lord knows how many of my 40 years had been dedicated to the creation of a negative force in my mind that forced me into catastrophic thinking and general negheadedness (that’s my word). Yes I felt more positive about my future, and I had come to terms with the massive change that was about to happen in my life, but I was troubled by worries about the birth, worries that were more exaggerated than the ‘normal’ pregnancy and birth concerns. I was convinced that my baby would die, and when I was diagnosed Group B Strep positive during the latter weeks of the pregnancy, I believed I had found the killer.
I worked pretty much up to the wire, in a full time job that had only recently been created and I had a lot to do before I could walk away with comfort. I had a team to recruit, as well as my replacement, and I had big projects that needed to be finished in my absence. Needless to say I didn’t get much time to ‘wind down’ and as I was booked in to be induced on the due date because of maternal age, I didn’t get much of a chance to prepare for the next stage either. My maternity leave commenced on the 5th April 2015. I was induced on the 8th April. And Freya Ellis Belle McBride was born happy and healthy on the 10th April. I will never forget the joy that I felt when she finally entered this world, and stole her place in my heart. To me her arrival was like a shining beacon in the darkness, telling me how silly I had been to fear the worst, and how many hours I had wasted on negativity and unfounded worry. She was here, she was beautiful, and she was my reason to be positive about the future.
“…She was brought into my life to teach me some lessons, but most of all she was sent to me to show me that you really can dare to dream…” (Welcome to the World, 15th April 2015, Bluemama)
“…One of the first lessons I have learned is to embrace the gifts we are given and to dare to dream that sometimes good things do actually happen…” (No time for blogging, 20th April 2015, Bluemama)
“…Every now and again a tiny little voice starts to whisper concerns about something happening to my precious little girl, but I have some allies up there in that mind of mine swatting those thoughts away like pesky midges. I think right now the worst that could happen…is that I could kill her with love…” (Obsession, 23rd April 2015, Bluemama)
On May 7th, I wrote a tiny blog titled ‘Cleansing the soul’. I truly felt that the birth of Freya had healed a troubled heart and mind, and that I might look forward to a life of hope and dreams, no longer thinking the worst. On May 20th I blogged again, sharing a poem that I had written for my son named ‘True Love’ which summed up the strength of the feelings that I had for Freya as well as it had for him. It would be the last blog I would write for a while, and 11 days later hell opened its doors to us and stole my perfect, normal, happy life away from me.
The 31st May 2015 was when Freya’s Story ‘began’. I shared my first blog about those missing weeks on the 19th July. You can find those blogs if you wish to be acquainted with the full account of what took place between the 31st May and the 19th July. For the sake of brevity here, understand that on the 31st May, at just 7 weeks old, Freya became seriously ill and was admitted to our local hospital Children’s Ward where, after going into septic shock she was treated with suspected bacterial meningitis. After 8 days of watching our baby get more and more sick, she was transferred to a nearby specialist Children’s Hospital where after days of various tests, including MRI scans and a bone marrow aspiration under general anaesthetic, and requiring a blood transfusion, Freya was finally diagnosed with Atypical Kawasaki Disease. On the 12th June 2015 we were told that our daughter’s heart was broken, and on the 12th June 2015 my heart broke too.
Freya recovered from the illness and was finally discharged, with a requirement to return for frequent follow up with Cardiology, Rheumatology and Gastroenterology (due to the widespread effects of Kawasaki Disease on a child’s body, a number of medical disciplines are involved). Her heart quickly showed signs of improvement, although improvement has reached a standstill for the time-being, and we await her next cardiology follow up in the coming weeks, where we can hope for further improvement, but expect no change. She continues to take a daily dose of aspirin to prevent her blood from clotting within the dilated arteries; medication she is likely to require for the rest of her life.
There has been a lot to be thankful for since the horror of the Summer. Freya is a remarkable little girl. She complains about very little, cutting teeth without so much as a whimper. She is happy and content, inquisitive and cheeky all in one. She is just like any other baby on the outside, and whilst we know that she has a broken heart on the inside, you wouldn’t know it and it has (so far) had no impact on her little life. I started ‘Freya’s Story’ as part of my blog and set up a page on Facebook (www.facebook.com/freyasstory) so that I could raise awareness, share information and Freya’s progress, as well as supporting other parents who might be going through the same thing with their child. Ok, so it hardly went viral, but I have just under 700 followers, and that is 700 more people than might have previously heard of Kawasaki Disease, and the feedback I have received from parents all over the world has been humbling.
This year has taught me many things. I gave Freya life, and she taught me the meaning of it. My belief system has been annihilated and I fear death around every corner. Kawasaki Disease showed up and slapped me right round my smug new mummy face. Of course I knew that none of us is bullet-proof, but the realisation of just how precious this life is was one that has been hard to come to terms with. You always think this kind of stuff happens to other people, don’t you. Every day in this life is bitter-sweet. Joy is guarded by sorrow, love over-shadowed by fear. You know those moments when you think about the future, small insignificant things that pop into your mind every now and again, like “I wonder whether her hair will be straight or curly..?”, or “I can’t wait to see her running around…” Imagine if every time you looked to the future you had something digging you in the ribs to remind you that you don’t know what that future holds, warning you not to become too complacent or to tempt fate. That is what this life is like. I don’t know what is around the corner for Freya, and no matter how hard I try to be positive and weigh up the probability of anything going wrong at all, the sun is never quite strong enough to break through the little cloud of sorrow that lingers. But maybe that cloud is a good thing? A reminder not to take anything for granted. None of us is promised a tomorrow, so if there’s something we want to say or do, we should do it now – you will only ever regret those things you don’t do.
Needless to say, this Christmas was an important one for us as a family, perhaps me more than the rest of us. Freya’s first Christmas was one way of making wonderful memories that would absolutely ensure that 2015 was ended on a positive note. And New Year’s Eve was my opportunity to stick two fingers up at Kawasaki Disease, turn my back on 2015 and take a step into a new year and a new chapter in our lives.
I have learned who really matters to me through this last year, and I will make sure that I continue to appreciate those people for years to come. I have met people that I would never have come across had it not been for Freya’s illness, and have opened my heart to strangers who have quite literally saved my life (you know who you are, Kawasister). I have won some small battles with medical professionals, and secured some contacts that resulted in a Virgin Fundraising link being set up to gather funds for Kawasaki Disease research through the links between Imperial College London and Rady’s Children’s Hospital, California. I have many ideas and hopes for 2016, centred around giving back and turning the experiences of last year into something good, but I am not going to share those until they are more concrete and I can ensure that I will not dismiss the ideas on a whim; I don’t want to disappoint anyone by making promises I may not keep, most of all I don’t want to disappoint myself.
Freya just woke up, she is still awake. This is an unusual situation for us as she is usually fast asleep by 6pm and we don’t hear a peep from her until the morning. Holding her in my arms just a moment ago reinforced for me the feeling of living in this moment. I couldn’t feel angry or annoyed at her for waking, I don’t think I could feel angry or annoyed at her for anything! I hope that one day I can tell her that I love her without tears being hot on the heels of those three little words. And I hope that I never forget that whilst tomorrow might be stolen from any one of us, nothing can take away yesterday, or this moment.
My hopes for 2016 are that we get closure on some of the outstanding issues with Freya’s health. I would like to obtain clarity around the issue of routine immunisations, and hopefully get caught up with those that she missed (all of them!). I would specifically like to protect Freya from chicken pox so that I might be less concerned about her mixing with other children socially. I do so wish to see her interact with her peers like a normal baby should.
I want to exorcise the Kawademons that still haunt me with flashbacks and intrusive memories, and eagerly await the start of treatment for that in the coming months.
I want to fulfil my promise to donate blood to give back for the blood and blood products that Freya received, ultimately saving her life. And I want to give back in other ways too, but I’m going to keep quiet about those for a little while 😉
I want to continue to make memories with those special people in my life. I would particularly like to be able to take a family holiday this year, as we weren’t able to go last year, and the immunisation issue has prevented us from flying. I want normal for me and my family.
This year has to be better than the last. It has to be. I mean, 2015 wasn’t all bad; it brought us Freya. But let’s face it, it was shitter than shit for the most part. Let life throw at us what it will, I no longer heed that threatening cloud. It can hover above my head and threaten rain wherever it chooses, but I am no fair-weather girl, and a bit of rain never stopped me from smiling. What’s that saying I keep seeing on Facebook? “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”