As Friday, and Freya’s first birthday, approaches I have been reflecting on the past year. I’ve thought about the battles we have been through, the ones we have in front of us and what would I want to tell Freya about this year when she grows up. So I decided to write her this letter.
I can’t believe it’s been a year since you came into our lives.
When we found out I was pregnant your dad and I were so happy. You were a feisty one even when inside, kicking me so hard I used to have bruises across my belly. Your dad used to play you Yoruba songs and we cautiously started planning our lives as a family. I even bought a book about how to bring up children in a trilingual environment. Never in a million years I could have imagined what a rollercoaster ride your first year would be.
As I am sure you already have heard a million times you took your good time to come out. You started to let me know of your arrival on Friday night, but only made an entrance to this world Wednesday lunchtime. Out went the plans of me hypnobirthing you out in a birthing pool with aromatherapy oils infused in the air – you had to be delivered with an emergency c-section with the emergency alarm being pulled when you appeared in this world, lifeless. The four minutes from you coming out to the first cry you made were the longest of our lives. The final hours before you were born was a blur to me – I do, however, remember the doctors bringing you by me for few seconds before whisking you away to the intensive care and you looked at me with your piercing eyes, angry, as to say “how did you dare to pull me out from the comfort of my home you peasants!”.
In retrospect, the dramatics of your birth do not surprise me the slightest – you have always been all hands on deck kind of girl. So perhaps the whirlwind of emotions and events your first year should not surprise me either. You’ve been to four different hospitals. You’ve had seven intensive care admissions just in last six months. You’ve had four operations, during which we have restlessly paced back and forth, not knowing what to expect. We’ve seen life leaving your body and coming back. We’ve sat in waiting rooms, looked at doctors who did not think you could make it in the eyes when they’ve told us to abandon hope. We have dwelled in the deepest despair. And we have cried.
But you have surprised not only us, but many. Every wobble you have had – big or small – you have bounced back (most of the time with your legs in the air and a big smile on your face, although not that cheerfully after naughty doctors weaned your morphine too quickly or when the maxfax man cut your jaw in four). From early on you always had such strong character, determination and concentration beyond your years. I used to think I would be the disciplinarian of the family, but must admit defeat. It became clear very early on that it’s you who is the boss of this family and who rules us with an iron fist. And as a mum, I could not be prouder.
What the next years hold for us I do not know. But what I do know is that you are an extraordinary young lady. Most people who meet you fall instantly in love with you. Despite all that has been thrown your way you love life and thrive. And you have profoundly changed us too. Your dad and I have fought your corner and refused to give up hope when told otherwise. We’ve pushed for better treatment, better care packages, better home. We’ve pushed through our comfort levels and trained ourselves to be semi-professional medics. And a year in I look back and see the life we planned did not happen. The life we had is no longer. But we do have you. And although it’s hard, you fill our lives with so much love and joy we cannot imagine it any other way.
Happy birthday darling girl. Mommy and daddy love you so much.
Freya will be turning one on 24 June 2016. She has been diagnosed with cerebrocostomandibular syndrome (CCMS), a very rare genetic syndrome with less than 100 recorded cases worldwide. According to one author CCMS sufferers can be divided into three categories: Those who suffer from lethal form of CCMS and die within the first month. The next category is severe, where the individuals affected die before their first birthday. The last category is mild, where patients survive longer than one year. As of Friday this week Freya falls into the mild category. I know it’s just words but to my ear saying that my daughter suffers from mild CCMS sounds pretty damn good, comparing to the other options.
As always I would like to thank you for following our story and thank all of you who have sent me lovely messages. I’m bad at replying, but appreciate your support. If you wish to celebrate Freya’s birthday by way of a gift we are asking donations to charity. Here is the link to her page: http://uk.virginmoneygiving.com/teamfreya .