\n<\/p>\n
W<\/span>hen you have a baby, especially if you\u2019re in an antenatal class, or friends or family members have a child of about the same age, there is a feeling that you\u2019re all in it together, at least at first. For me this big, life-transforming event might have felt intensely personal, but the shared connection with other new parents, who were also learning on the job, not to mention the books \u2013 Your Baby Week By Week, The Wonder Weeks \u2013 can trick you into thinking that the path is a predictable one.<\/p>\n From hourly feeds and wake-ups to sleeping through the night, breast- and bottle-feeding to solids, crawling to walking, maternity leave to nursery to school, the journey may have slightly different scenery, but the impression given is that ultimately it ends up in the same place.<\/p>\n I knew, though, from my own family experience that for some parents the path begins to deviate. For some this happens in pregnancy or at birth. For others it might be in the early weeks or months, and for others still, far later. But there\u2019s always a moment when the parent of an ill or disabled child realises that, suddenly, they are \u201cparenting on another plane\u201d.<\/p>\n That\u2019s what the former Guardian staffer Mina Holland calls it. Her book Lifeblood, about her daughter Vida \u2013 who, before she was six months old, was diagnosed with Diamond-Blackfan anaemia syndrome (DBAS), a rare genetic blood disorder for which there is no cure \u2013 has just been published. In it Holland tells of her discovery that her baby was seriously unwell and would need regular blood transfusions to stay alive, followed by the conception and birth of a son, Gabriel, who would turn out to be a match for a bone marrow transplant.<\/p>\n In my thinking about parenting, and throughout the writing of this column, I have made every effort to not exclude parents of children who are disabled or unwell, or have health needs; babies and children who aren\u2019t meeting their milestones or who require extra support or, as in Vida\u2019s case, hospital treatment. What I hadn\u2019t done before, though, is interrogate how it feels to have a baby or a child in hospital when every other parent you know continues on the typical trajectory that most people simply regard as \u201cnormal\u201d. It is something that everyone would do better to understand. When parenting, we are not all in the same boat after all.<\/p>\n For parents in this situation, it can sometimes be really hard to have open conversations about this with friends and family. On one side there is often a squeamishness or discomfort when it comes to disability and illness. On the other there\u2019s a parent who is working through feelings of grief, anger and, as a friend put it, \u201cthe sheer fucking unfairness\u201d of their circumstances.<\/p>\n \u201cI definitely did have moments of bitterness and really resenting other people\u2019s healthy kids,\u201d Holland tells me. \u201cSome friends came over with their babies who were the same age and one of them was in Vida\u2019s bouncer just bouncing up and down, gurgling, just pink and bonny, and I remember feeling furious.\u201d She wants to emphasise that people could be thoughtless, but they weren\u2019t bad or cruel. But being witness to, say, a WhatsApp conversation in which your NCT group is all talking about how traumatic the first set of immunisations has been when your baby has already been subjected to hundreds of needle pricks and other medical interventions? That is going to hurt. And for parents on the other side of the equation, it\u2019s a difficult tension to think that by living your life as usual you might be making someone else\u2019s day worse.<\/p>\n Parents of seriously unwell or disabled children receive daily triggers reminding them of their difference. Parents on a more typical journey of course want to show off their children\u2019s achievements, without realising that those first steps, or the drawing a child has done of their mum, proudly posted, has the potential to make their friend feel as if their heart is breaking. For months, Vida had a Hickman line, which meant she couldn\u2019t swim or go in the bath. You can understand how seeing a picture of another child at the beach might make a mother of a child with a serious disease feel. It\u2019s not about people feeling they can\u2019t share \u2013 it\u2019s more about understanding how isolated parents in these circumstances might feel and, while trying not to be tactless and crass, recognising that if you unwittingly make others bristle, that doesn\u2019t mean it will last.<\/p>\n Several years later, Holland says she no longer begrudges the mothers who were distressed by their babies\u2019 immunisations: \u201cOver time, I\u2019ve grown more compassionate about the vulnerability of new mothers under even the smoothest of circumstances.\u201d It was, she says, a time when she was quite difficult to help. Other people\u2019s positivity was annoying, even though hope and positivity was something that she also needed. As Archie Bland put it in his recent essay about his son Max, whose near-death in infancy resulted in cerebral palsy: \u201cThe truth is that it was very hard to say the right thing to me last year.\u201d<\/p>\n It\u2019s not surprising that the parents of children who are very unwell often find solace in communities of those going through similar experiences, who understand the nuances. Disconnecting from social media, as Holland did, and focusing on those shared experiences instead helped her on the path to acceptance. If you\u2019re close to the parent of a child with a serious disease or a disability, it can simply be a case of being present. And also of recognising that some of the difficult feelings they are experiencing are totally natural.<\/p>\n Accepting a radically different version of parenthood from the one you expected is a painful process. \u201cNo one could catalyse my acceptance of it, but they could simply be there, showing they were thinking of us \u2013 which they did,\u201d says Holland. Anger is part of the process, but it doesn\u2019t mean that any parent caring for an ill or disabled child loves them any less. My own mother has always said of my brother\u2019s complex needs, which include autism and epilepsy: \u201cI have never wanted any other child but my own.\u201d Holland says the same \u2013 because Vida\u2019s genetic mutation is intrinsic to her: \u201cIf she didn\u2019t have it, she wouldn\u2019t be her.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":" When you have a baby, especially if you\u2019re in an antenatal class, or friends or family members have a child of about the same age, there is a feeling that you\u2019re all in it together, at least at first. For me this big, life-transforming event might have felt intensely personal, but the shared connection with<\/p>\n","protected":false},"author":1,"featured_media":10455,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[165,166,3430,3427,3428,1165,630,3429,2292],"class_list":{"0":"post-10454","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-care","9":"tag-children","10":"tag-cosslett","11":"tag-disabled","12":"tag-harder","13":"tag-lucy","14":"tag-parents","15":"tag-rhiannon","16":"tag-sick"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/10454","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=10454"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/10454\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/10455"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=10454"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=10454"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=10454"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}