A couple of months ago, I ran after my eldest daughter with her morning medicines as she had left for school without taking them.
I ran really fast, overtaking joggers and not stopping until I ended up outside her school but I was too late, she’d already gone in. Bent double and leaning into the stitch in my side as hundreds of teenagers streamed around me, a teacher came over to see if I needed any help, after speechlessly waving the meds at her, she instructed me to speak to reception.
The receptionist was efficiently busy in a way that made me feel like a helicopter parent making a fuss about vitamins, so I added: My daughter has a kidney transplant and these drugs are part of her immunosuppression regime to prevent rejection. She absolutely must take them, and as they are cytotoxic, the fewer people who handle them the better. Looking alarmed, the receptionist handed me face mask and made me go stand in the corner.
And, this is what happens, I have found, when I have to share stories that are frightening. People want me to stand in the corner because I make them feel uncomfortable, and yet this secondary school, so far, is way better than her primary school ever was. They were just incompetent and put her physically at risk more than once. One time she ended up in hospital because her second year primary school teacher who called her by the wrong name everyday was a know-it-all, too stupid to read the care plan, and decided that my girl was an attention seeker. Who would do that to a five-year-old? On many occasions, I was made to feel like a hysterical mother and not taken seriously and one of the governors pompously emailed me, when I said that they were crap and should at the very least apologise, to tell me that the school policy is never to apologise. I often walk past him in the street and he never acknowledges me. What a loser.
I was upset about all of this for a very long time, but now I see that I only have so much energy in a day and I want to invest it into the people who matter, right here, right now, and to let go of the things said by people in the past and to not even take on board other peoples’ discomfort in the present day. That’s their affair and it’s not my job to make them feel better about my life, they should be accommodating me. I am willing to hold space for their fear as long as they do what they are supposed to do, and if they don’t know, just do what I ask, since I am the expert in this situation, the situation of looking after my daughter.
Anyway, back to me in the hallway of the far better secondary school, I was just wondering if I needed to face the wall when my eldest arrived and said: Your shirt is wide open, I can see your belly button and why are you so red in the face?
Her response was so funny that I laughed out loud and gave her the tablets to which she said: I only forgot because you made me empty the dishwasher. She then swallowed them without water, which amazes me every time, and hustled me out of the building.
When she came home that evening, she wanted to see what I had been up to that day. Surprised, I asked her if she was sure, as it was just me writing about my fahalings (feelings), but she said: Of course I want to see it. I’m invested in your life. The clarity of her commitment and her whole heartedness made me cry. She responded by comforting me and has since cheekily used the phrase I’m invested in your life ever since to get out of doing things she just doesn’t want to do, because she is after all an ordinary teenager who had has some extraordinary life experiences.
She was born 13 years ago with end stage renal failure and lung damage. The outlook was bleak. Each night of the first week of her life was a bonus and so it was then that I started a WordPress blog about her, because if she was going to die then then I wanted the whole world to know that she had lived.
I didn’t enjoy pregnancy as my first had ended in miscarriage and during this one, renal problems were flagged at the 20 weeks scan. Over the following weeks each appointment delivered sadder and sadder news until they scheduled a caesarean for me because she wouldn’t survive a natural birth.
I went into labour early with her and as there were no beds left in intensive care for her at UCH, in the middle of the night they transferred me to the Homerton hospital where they prepped me for surgery a second time and kept me on a monitor all night. Later the surgeon told me that he wanted fresh teams of people to operate as we were a complex case and that after they had woken him in the early hours, he hadn’t been able to go back to sleep as he kept thinking about the best way to manage our care.
He managed alright, he saved her life. There were two teams of medical staff in the room, the maternity team and paediatrics, and Gt Ormond St Hospital (GOSH) was on the telephone. Her birth was really quick though it took three hours to stabilise her before she was put her in the blue cot above so that she and her dad could go straight to GOSH.
I discharged myself as soon as the epidural worn off really, because what if she had died before I met her? I’d only had one brief connection when they had lifted her out of me and held her up so that I could see her. She had looked at me with her dark eyes, never making a sound. (In primary school, when asked, Jasmine told the teacher that she didn’t cry at birth, and the teacher was so dismissive saying: Don’t be silly. All babies cry at birth. Another foolish know-it-all, babies can’t cry at birth if all their airways are blocked with amniotic fluid.)
Each day, I spent holding my baby’s hand and talking to her and then each evening me or my husband would write down what had happened that day. Time in hospital takes on a dreamlike quality sometimes the waiting is unbearably long and other times things move really fast. So much can happen and change in one day.
There was a lot I didn’t share on the blog, like the night I was standing on the tube platform still very sore after the caesarean, still bleeding intensely and leaking milk everywhere and I thought: If I just take one step in front of the tube this nightmare will be over because I cannot stand to feel like this a moment longer. I was so afraid and stood with my back against the wall until the tube arrived. Another time, I walked past a mum pushing a new born baby and I wanted to grab the baby and run away as the intense desire to bring a healthy baby home was overwhelming.
How do we bear the unbearable? I don’t know. For me, there was nothing else to do and nowhere else to be but with her, for as long as she needed me, as frightening as it was. I had to show up whole heartedly. I had to be invested in her life.
My baby came out of intensive care and moved to the renal ward after one week, which was the first time I held her (my father-in-law said: Oh that’s criminal, they should have let you hold your baby, which is something, somebody says when they weren’t there and want to direct the anger they have about the unfair nature of life because they can’t manage their emotions). She came off the ventilator and went on haemodialysis in her second week of life, and then onto peritoneal dialysis in her first month.
Writing a blog helped me to make sense of what was happening and basically find a way to bear the unbearable, not that a lot of people understood that, they thought it was for their benefit and would give me unsolicited feedback on what I was writing about. They had very fixed ideas on what I could and couldn’t say and how I really should have been writing the blog. I had other ideas about how much more receptive I would have been to their ideas had they, oh I don’t know, shown the fuck up for me and my husband, held us whilst we wept, or even did something practical such as a bit of shopping, or cooking the tea, or fetching a cup of tea as we sat by our daughter’s bed praying for a miracle.
As it was the hubby and I were barely keeping it together and we would take turns to be brave, I know I would stand and weep in the shower noisily and then I would come back out and carry on. In the event that she died – when she started dialysis, we were told that only two thirds of the children survived – we would be there for her, our faces would be the last ones she saw as she left this world in the same way that they were the first faces she saw when she came in. We were invested in her life.
Listening to nonsense from other people, who were never there, made me not want to blog about my baby girl. I didn’t have the energy to deal with their feedback but my husband carried on faithfully blogging. Similarly, the night we were told that she had 1% kidney function and we just had to take it day by day, he spent his time sewing some little ‘J’s on her onesies. He was invested in her life for however long she needed it and 20 months later after many ups and downs, he kissed her goodbye and walked off to Guys to give her one of his kidneys.
We kept the blog going for two years until her second birthday, five months after transplant, nine months after the birth of her sister, because we needed it, to make sense for ourselves, and then left it online for whoever needed it, but have intermittently asked my eldest how she feels about sharing it. She is happy to do so, because even though she is incredibly shy, she knows the power of story, not least of all, because she knows first hand the difference her story has made to complete strangers finding themselves in the same position. Over the years they have written to thank us.
This is the power of telling our story, of talking about the things we cannot bear. I never thought I would ever reach a day when I could talk about that period of my life without pain, not that it stopped there after two years and everything was hunky-dory, chronic illnesses don’t go away, so talk about it we must, otherwise we can never grow around it and allow ourselves the space to change which is something we do all through life whether we wish it or not.
This week I finally decided to translate the WordPress blog to static pages, via the simply static plugin, as it’s more secure than having very old software hanging about, and when I was checking it worked, (some bits don’t and it’s dreadfully dated with mixed up code everywhere which I will sort out at some point) I ended up rereading parts of the blog. I haven’t read it for a couple of years because I couldn’t bear it. This is because I was so focused on the pain and sadness, I had forgotten about the laughter and the love. This time around was different, and I read it with wonder and awe and all I could do was offer love and compassion to us and our tender hearts.
I don’t have any great words of wisdom, it was terrible, then it wasn’t and sometimes it has been again, but wanting to give this difficult life experience meaning, which is all I can do for me and for my daughter, the main question I want to answer is: How did I love? How do I love? What really matters?
You matter and I love you, whole heartedly, for I am invested in your life.