Last week I introduced you to Anna, whose daughter Jemima has Cystic Fibrosis. Here she shares Part Two of her journey as a mother. Thank you again, Anna, for your honesty.
I’ve been deeply humbled and encouraged by the response to the first post I wrote for Cat’s blog. It cost me to pull myself back into those black and white days but I’ve been amply repaid by the kind words I’ve received and in knowing that I’ve not been alone in these feelings.
Two and a half years on and life looks very different. Jemima is a fully fledged little person, desperate to communicate from the moment she formed her first ‘oooh’ sound, determinedly social, a blur of life and energy. She plays hard, sleeps soundly and is chomping at the bit to start nursery in the spring. We do weekly tennis, gymnastics, trampolining and music classes, as well as a monthly running club and swimming whenever we can. We do library visits, craft sessions, playdates and lots of park trips. She loves her stuffed cats (including an eccentrically named feline called Cupompom: like cucumber + pompom), role playing with Duplo characters and bouncing on her 4 foot trampoline with her stuffed frog. Her favourite books are currently ‘Zog and the Flying Doctors’, ‘P is for Potty’ and ‘Toad Makes a Road’. Her favourite colour is green and her favourite foods are bear paws and smoked salmon. Her eyes are light blue, her hair is honey coloured and she has a double crown. She has enormous tantrums which she recovers from by lying on the sofa with her dummy and blanket. She twiddles her hair to fall asleep. She is both a very ordinary and a very extraordinary girl.
The process of coming up for air after Jemima’s diagnosis has been long and hard. People sometimes comment on how time has flown. For me, it has involved the longest nights I’ve ever known: nights I spent expressing milk and watching dawn break over the city while a newborn Jemima slept on the ward. Our life before her seems so remote. We have been extremely blessed that her health has allowed us some respite to adjust to our new life, our new world. We have not had multiple hospital admissions up to this point; many children have. My heart and all my respect goes out to the parents of these children. Our one admission for viral bronchiolitis (unrelated to CF) sent me spinning back down into the dark again.
As my dad often reminds me, it costs us more to take care of Jemima. It takes time and energy to administer daily medicines, inhalers and physiotherapy. It takes creativity to think up games that make these things fun or at least acceptable for a toddler. It takes energy to chase her around, bounce with her and have tickle fights to help her clear her chest. It takes patience to squeeze apple puree onto a spoon and sprinkle on Creon around 20 times a day. It takes time to make sure that the house is clean, to help protect her lungs from bacteria and dust. It costs us financially to buy the high calorie food that her body needs. It costs us emotionally to hold her for blood tests and cough swabs and to explain to her why she can’t gather armfuls of rotting leaves like the other children because it could make her poorly. It costs us socially to avoid people with coughs and colds. Chronic anxiety wears my patience with her and with Jonathan. As much as it costs us, it costs some parents much more to care for children with more severe or complex conditions. But as my dad also reminds me, the rewards are great. I am amazed every day by Jemima’s resilience. Despite having more to complain about than some, she is not a complainer. She’s physically tough. She’s emotionally mature. She does her treatments and takes her medicines (mostly) without complaint. She’s not afraid of medical professionals or of clinic visits. If she has a procedure she dislikes (cough swabs are currently the enemy) she cries but gets over it. She’s bright, optimistic and curious. She’s agile and physically fit. To her, life is full of people to play with and parks to play in.
This sends me back to my original question and one that I’m never far from: how do I know that God is good? People often say that God is good in response to good things that happen to us. But to me there is a big difference between saying that God is good in response to our circumstances and saying that God is good irrespective of what happens to us. The logic is fairly simple: if the goodness of God is a consequence of our circumstances we must assume, if circumstances go awry, that God is not good. If God’s goodness is validated by our circumstances, we must assume, if circumstances go awry, that he’s either displeased with us, that we’ve strayed from his ‘path of blessing’ or that our circumstances are beyond his control. None of these options are comforting. I know that God is good not because I feel that it’s true but because I believe it is so. Fossilised somewhere in my memory are the words of the Psalm we used to recite at church when I was a child:
For the Lord is good and his love endures forever;
his faithfulness continues through all generations. (Psalm 100:5)
I wouldn’t say that this feels ‘comforting’ exactly but I do believe that it is true. The knowledge that God is good, irrespective of what happens in my little life, is both liberating and terrifying. In many ways I would prefer a clearer cut and more directly applicable system: that God would bless me and keep my daughter well and by this, show his goodness. But I know in my gut that the truth lies with Job, a man who suffered and who wrestled with these questions. Job asks:
Shall we accept good from God, and not trouble? (Job 2:10)
Job did everything ‘right’ yet he lost everything he had. His friends told him to shape up or ship out but still he persevered in believing that he wasn’t being punished for his sins. And he was right.
Fast forward a few thousand years and the question remains: if God is good regardless of my circumstances, how can I know that he cares? I go back to the words of John:
This is how we know what love is: Jesus Christ laid down his life for us. (1 John 3:16)
These are hard truths. They challenge the very basis of my faith. They are hard because, as my pastor says, suffering has become personal. But there is great relief in knowing that the fact that my daughter has a genetic disease is not a sign of God’s displeasure with me or with her. He is still good. He sent a saviour in Jesus, his precious only son. The fact that Jemima has been very healthy so far is an indescribable blessing but it’s not the reason that I know that he is good. It’s taken the words of the Bible and the words of some wise people who have suffered more than I have to bring me to this conclusion. It has taken its toll on me and has left a wound which – although I know it will never heal this side of the veil – contains deep and precious truth.
I believe that God is good because he says he is and because he sent Jesus to bring ultimate healing for the sufferings of the whole world. Genetic diseases should not be passed on through generations. Babies should not be stillborn. Children should not have to make bucket lists. Add to this a million other painful tragedies and injustices. God cares, he is good and in the end he will bring about restoration:
He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. (Revelation 21:4)
This is the end of the story and it’s one that I long for exponentially more than I did before I had Jemima. As for our story, I don’t know how it will play out. There are now medicines that aim at fixing the faulty gene that causes CF on a molecular level. There are also other tragedies, unrelated to CF, that we’re not guaranteed to be spared from. I want Jemima to live a long, full and joyful life. I want her to know Jesus. I want to protect her from suffering. The knowledge that I can’t protect her from life’s blows has been brought home sooner for us.
I am still angry. As the Hulk says in the film ‘Avengers Assemble’: “I’m always angry.” But I am also grateful. As much as it costs us to take care of Jemima, our victories are all the sweeter. Someone has likened living through a CF diagnosis to climbing a mountain of slick sh*t with a breathtaking view. I don’t take any of Jemima’s milestones for granted. Her first swim and her first stomp through the snow were deeply emotional and exhilarating for me. Every night that I go into her room and see her sleeping peacefully brings intense thankfulness that we’re not in hospital; that I can enjoy a glass of wine and sleep in my own bed instead of on the hospital floor amidst the bleeping of machines and slamming of doors. (Those of you who’ve been there will know all too well what I mean.) Every morning when she calls me into her room at 6am because “Mr Golden Sun is awake!” is tinged with relief and thankfulness. The breath in all of our lungs is a gift. Life is a gift in all of its fragility.