Wednesday, February 25, 2015

If you ask

When you first meet my daughter, Johanna, I might tell you something about her. I might tell you she was born with a complex heart defect, I might tell you that her insides are flipped around like a mirror image. Or I might tell you that she's 10 months old now and she can crawl, pull herself up and shuffle along the sofa or the TV console; that she's not big on cereal, but she loves her biscuits and little baby fruit puffs.

I might tell you her favorite cartoons: Hi 5, which shows on TV once at 8am and once at 6.30pm on weekdays (she loves the dancing segments), and Chu Chu TV Indian-flavoured nursery rhymes on YouTube, which we might use to distract her when we're really desperate. If you're male, I might tell you not to come too close, because she seems to take to women better; and if you had a beard, not to approach at all, if you didn't fancy a major meltdown. And take off that cap too, because she's terrified of headwear. Is hat-o-phobia even a thing?

I might tell you that she loves bath time; she has three little rubber duckies and she'll complain when you lift her out of the water and wrap her up in a towel when it's over. I might tell you she has four teeth on the top and two on the bottom, and that it really hurts when they meet with your flesh caught in between. And I might tell you that those gappy teeth make her look just like Spongebob when she grins and her eyes become black tadpoles, but you'll probably see for yourself if you play a game of peek-a-boo with her.

If you ask how she is, I'll probably tell you she's doing well and meeting all her milestones; if you press a little, I might tell you her oxygen saturations are hovering at the mid 70s, "okay, but not great", as her doctors say. If you ask me how I am, I'll probably tell you I'm doing great, really enjoying motherhood and that I often wonder what this bright sun would say if she could talk; if you press harder, I might tell you that some days I'm gripped by fear that I might not have a whole lifetime to get to know her, that the Rastelli procedure she's due to have has an 80% survival rate for 10 years which drops to 50% for 20. I might be able to teach her her ABCs or long division in primary school, but I'm deathly afraid I won't get to see her graduate or find true love or become a mom.

I might tell you to go home and hug your children a little tighter, to love your family a little harder. I might tell you to be in the present a bit more, to put away your phones and laptops and be present when you're in the company of your loved ones and savor the seemingly mundane moments because nobody has forever.  



  1. My English isn't very good, but I just can't let myself not to comment on your brave journey. I wish you and your amazing family all the best. Lots of love from Ukraine!

  2. Hello there,

    I read your blog posts while on the bus and as I started from the beginning, trying to piece together Johanna's life, I found myself alternating between heartbreak and joy. Joy because I look at Johanna's picture when she quite a few months old and all I saw was how happy and incredibly cute she looks. Heartbroken because of what you and your little darling have been going through.

    Many times while reading your blog posts, I had to stop myself from continuing because my eyes were brimming with tears. I identified with your pain, not because I have gone through anything remotely similar, but because I too am a mother.

    You are so strong. And Johanna is blessed to have a mummy like you. I said a little prayer for you and your little family. Thank you for reminding me that not everything is forever. Thank you for opening my eyes to see that while life isn't fair, God is there. Though I don't know you personally, please know that your sharing has touched my heart so deeply.