After a fairly straightforward pregnancy, my daughter Freya came to this world with all the drama and flair she brings with her anywhere she goes. Born without a heartbeat, the four minutes it took the doctors to bring her back were undoubtedly the longest I’ve ever experienced.
It was a start of a journey very different from the one we were expecting. When I was pregnant I was full of emotions—excitement, anticipation, worry. As a first-time mum I feared giving birth. I had a nagging, unexplainable fear that something would go wrong, but tried to fend off my fears by relying on normal ultrasound results and strictly following all kinds of pregnancy guidelines. I thought that after the scary part—the act of giving birth—we could concentrate on “normal” baby life at home and that my anxieties would disappear.
Little did I know. Soon after birth, Freya was diagnosed with cerebrocostomandibular syndrome, a rare genetic condition that affects her rib cage and jaw. She had a tracheostomy when she was three months old and she sleeps at night with the help of a ventilator. She has a gastrostomy and has had three jaw operations to date. This year we have had nine PICU admissions, six of which have been for acute episodes.
To say our lives have been turned upside down is an understatement. They certainly have, and it has been an emotional roller coaster in the truest sense of the words.
The Emotional Roller Coaster
First, we felt surprise, like we had been forcibly shoved into a world we never knew existed. A world of long hospital stays filled with endless handwashing and emergency alarms. A world full of teams and teams of medical professionals, and getting used to leaving our little baby behind every night to be looked after by strangers. A world where everyone expected us to become some sort of semi-nurse just to take our baby home.
The doctors gave us little hope. The best news they could give us was that they could not confidently tell us how things will turn out, as they had seen only a few similar cases.
But it did not look good. Surprise slowly turned to sadness. We felt crushed, and despaired. But there is only so much gloom and doom one can take, and when you have a sick child you simply don’t have the luxury of feeling sorry for yourself for too long. When your child may only have a limited time on this earth, as a parent you do all you can to give him or her the best of everything—best fighting chance, best quality of life. We’ve always seen it as our job to make sure that the time we have with Freya, however short or long, is the best we can provide her, and is full of life, love, and laughter.
Whereas the thick smog of sadness started shifting as months passed, another emotion, fear, made a home in our lives. Fear that something will go wrong, that the next infection would be the one Freya did not manage to conquer, fear that after months of progress she will start slipping backwards. Not knowing how her condition will develop in the future is our greatest source of hope, but it is also an endless source of doubt and fear. I don’t think these feelings will ever go away, but rather than trying to banish them, we are learning how to live with them and not to dwell in them. Facing your fears makes you stronger, and after you realise that your worst fear may become reality at any time, you feel strangely free.
Increasingly we find joy in our lives. A year and a half ago the doctors sent us home with a baby no one expected to survive her first year. She proved them wrong. Freya is a fierce little lady, full of mischief, laughter, and love. She is exceeding everyone’s expectations and meeting her milestones like a champ. For the last six months we have been at home more than at the hospital. She is our miracle baby, who wakes up every morning with a big smile on her face. We would be fools not to enjoy our life with her to the fullest.
Although it is impossible not to feel bitter at times and ask those “why us” questions that haunt all of us when times are tough, we are filled with gratitude. We are grateful for every milestone Freya reaches, every slobbery toddler kiss we get, every single day we have with her. We are grateful for people who tirelessly work to help us keep her healthy and safe, and for the friends who have stuck around to weather this storm with us. We are grateful that this journey has allowed us to find a different perspective, allowed us to grow as parents, as people. It has taught us to live in the moment better than any book on mindfulness, and I truly feel I can appreciate little things in an entirely different way than I did before.
And most importantly, there is love. Someone told me that you don’t just love your children, you fall in love with them. Rarely have words resonated so true with me. When the future is uncertain, you hold onto your kids just a bit tighter. You want them to know you love them with every molecule of your being and you want to celebrate that love. There is no joy in the world comparable to that of loving your children and them loving you back. And there is an abundance of that in our home.
One more thing. The biggest revelation about emotions on this journey? It’s not the scale of emotions—I gathered early on that we would have every emotion under the sun. I even kind of anticipated how quickly one emotion can turn into another—from joy to despair, right back to joy—though you can never imagine how exhausting it is unless you live through it. What surprised me was the strength of these emotions. Living with a child with a life-threatening condition is like living life wearing glasses made of Instagram filters. You feel worry, fear, and despair brighter, deeper, and stronger than any emotion you ever experienced before. But so it is with the joy, the gratitude, the love.
And that is what makes it all worthwhile.