Actually, people say he’s gorgeous

It’s May 2016. I get a call from the Health Visitor out of the blue, asking to meet us. She’s a new one (to us). She texted me a few months back, but never followed up or came out to see us. The last HV we’ve seen was back in the newborn days, who signed us off once it was clear that breastfeeding was going well.

I’ve had some concerns about B. He rolled over early, but now at 10m+ he’s not able to do many of the things I’d expect him to (he’s not able to sit without support, not able to crawl, needs to be spoon-fed, and the food needs to be puree…I’m a baby-led weaning inclined, so I don’t say ‘need’ without cause, he needs that help), so when the new HV asks if she can come now, today, unusually (for me) I say yes.

She comes in a bit breathless. In retrospect, I suspect she’s trying to catch up from mistakenly *not* coming to see us previously. He’s sleeping, but her coming in wakes him. I pick him up to introduce them, and the first words from her are: “Do people often tell you he looks like he has Down’s Syndrome?”

I just look at her, because the answer, of course, is no, no one has ever said any such thing to me. Not the midwife who saw him postnatally. Not our previous Health Visitor. Not the GP who saw him for his 8 week check. Certainly not random people off the street, or people we know.

Mostly what they say to me is, “Isn’t he gorgeous?”

And it’s true. This child is called ‘gorgeous’ so often it’s like another name for him. None of my other children have had this.  There’s a light in him, and such beauty in his eyes. In the days that follow, as I start to process this encounter, it’s something I’ll watch for and hold to – the people who keep coming up to us and calling him ‘gorgeous’.

I can’t say, however, that some wondering hasn’t crossed my mind, with the developmental delays and sometimes a particular look about him. He was quite floppy as a newborn, for longer than I might have expected, but he breastfed successfully, even with a noticeable tongue-tie. He rolled over early. It’s only been after that things started to not match up with expectation.  But life is hectic here, nursery isn’t concerned, and I’m aware that every child is different.

I’m not sure how I reply. I think I mention the developmental delays.  She then takes an opposite tack, minimising. She tells me that maybe my child will suddenly ‘catch up’ developmentally, and that we’ll meet again in a few weeks, and maybe there’s nothing to be concerned about. I’m not sure why this seems an adequate way forward to her; later she tells me it had to do with ‘gaining my trust’. (Not the right approach with me, that’s for certain. I’d far more appreciate a referral for a blood test and some support for my child’s apparent developmental delay.)

She leaves, and it’s only then that I really start processing what’s she’s said, and that B and I can’t wait a few weeks, we need help now. I start browsing the internet. I finally see what babies with DS look like. They look like my baby. I try calling her a few times, but no answer, no call back.

So I end up having to book a regular appointment with the GP. We wait a week before we can get an appointment to see someone. I’m not sure why this is, as usually they are much quicker. When we do get to see someone, he’s quite sympathetic and matter-of-fact, stating that you can’t really tell by looking, but yes, given the developmental delays B should be referred on to the paediatrician.

We end up getting an appointment for mid-July. That’s about 5 weeks in the future, but what can we do? I don’t know if there’s anyway to get genetic testing privately, but what difference would it make? There’s not a whole lot to do but wait. (In the end, the timing is perfect as I’m fortunate enough to pull off getting to Orlando for the first MuTu Pro training (thanks, Mom!), and sadly as soon as I’m back, I’m off again to California following my father’s death.)

In the time when we’re at home, the Health Visitor does pop round and refer us for a visit with a physiotherapist. Unfortunately, the physio who visits us prior to diagnosis is simply insulting. She looks at my little one and manipulates him a bit – including making him stand without adequate support in a way that clearly alarms him, but too quick for me to intervene –  then declares that while he may have some ‘mild’ issues, possibly a touch of hypermobility (he’s actually massively hypermobile), the children that she deals with are far worse and there’s nothing really she can do for him. I mention the suspicion of DS and she says she doesn’t think he has it. “Well maybe mosaic DS?” Her face twists and she tells me ‘Absolutely not. That’s the one where they have exaggerated mongloid features and real problems.’ I’m so shocked by this that I don’t say anything, even to correct her. I just feel sick at her response and see her out quickly. I am thankful we’re not likely to see her again.

In the run up to the appointment with the paediatrician, we see the HV again. I try to stay friendly as I know she intends to be an advocate for us. She asks me to come to clinic to have him weighed. It turns out he’s off the bottom of the charts for a ‘normal’ baby. She’s clearly panicking a bit at this, and tries to pin it on me not feeding my child adequately.

I’m not so happy myself (though I know he’s eating well and it’s not that), but I have a niggling suspicion that Down’s Syndrome growth patterns may be different.

When I get home and Google I see that there is indeed a separate chart for babies with DS. My little one is just under the 50th centile on it (pretty much where he is today). I leave her a phone message about this. I’m not sure it makes any difference. We don’t see or hear from her again after this point, but I’m not particularly bothered as it’s clear we are a bit beyond her normal scope of practice.

We (B, my 13yo daughter and I) go into the appointment with the paediatrician unsure what to expect. Thankfully, we need not have worried. He’s incredibly courteous, well-informed, and takes the time to talk through the situation with us. He explains that you really can’t tell about DS just by looking, the tests that will be done, and how long it will take to get the results (several weeks). Bloods are taken and sent off. Again we wait.

I manage to catch up with him by phone in August. He confirms B has DS, not mosaic DS but the full version. We make an appointment for September to discuss further. We’re referred for a heart check, but are pretty certain there won’t be any problems.

It turns out we’re wrong about that, (he has Atrial Septal Defect), but by this point I can say that every professional we deal with going forward is kind, reassuring, and genuinely helpful. It takes a little time for referrals to come through, and November to January in particular were intense averaging 3 appointments weekly as we caught up.

Now, in March 2017, things are settling into a new normal. He’s got great support from Portage, as well as from the NHS (including a physio who sees him weekly, not the one from before!).  The Down’s Syndrome Association and Down’s Syndrome Northeast have been great points of reference for us.

I’m not sure I’ve fully processed what it means yet to have a child with Down’s Syndrome – quite frankly I’m too busy looking after ordinary life to give space to letting this settle fully in the way that I’d like to – but what I do know is that we all of us here love him so incredibly deeply, and we would be lost without him. He’s not ‘less’ to me than my other children in any respect. He is beautiful and whole, and exactly who he is meant to be. He enriches our lives, and has transformed me and helped me to grow as a parent in ways I never could have predicted. I am definitely a much better person and a much better mother thanks to him.

So, do many people tell me he looks like he’s got Down’s Syndrome? No. Not one person has ever said this to me, apart from that Health Visitor. Often I wonder if they have any idea, or if I should mention it, when people remark on how tiny he is (he’s only 20lbs now and sometimes the DS is obvious, sometimes it’s not), but mostly what I still hear is just the same as before.

People look at him, they see his smile, and they say, “He’s gorgeous!”

In search of: a new map of motherhood

There are not many (any?) maps of motherhood that trace out the way I want to be living it.

It’s just after 9pm on a Sunday. It’s been a good night. My kitchen is clean and well-stocked for the week to come (a loaf of spelt bread made for my daughter who can’t tolerate wheat, porridge oats soaking overnight for the baby, a grocery delivery has left us with full cupboards and fridge, and overflowing fruit bowl). The children’s clothes are washed and ready for morning. Toys are tidied away. I *think* homework has been done. And most importantly all four are asleep in bed.

On a bad or even average night, none of this would happen…and just so you know there’s no superiority here and I’m savouring every moment of this and feeling infinitely blessed. (AND my baby woke up about ten minutes after I wrote this bit so I’ve been comforting him back to sleep…but he nursed down again quickly, so it’s still a good night sleep-wise thus far).

When people talk about hitting rock bottom and rising, it’s a narrative that doesn’t make a lot of sense to me.  It’s too simple, too linear, too unreal for me in terms of lived experience. My experience of the bottom, and yes, bottom it is, is that I’ve been skating along it for a number of years now…that bottom for me could be summed up as the underside of motherhood in so many ways. The shape of the landscape changes. My head is mostly facing up. But how do you know, really know, it’s ‘rock bottom’ when there are blind drops and hidden edges waiting.

It’s taken me about a year and more, of betrayals, disappointments, and failures, to accept and really deeply understand that in this most recent manifestation I’m not just a separated or single mother, (after many years on the cusp of legal divorce), but a sole parent which is an entirely different thing.  (I do have some shared support from my older children’s father, my soon to be ex-husband, but with the father of my youngest we have at present no contact, through his choice and action.)

I’ve had to accept that the shape of what *is* is not and never will be one of equal partnership in parenting. That’s okay, in the sense that the current arrangements are what is healthiest and happiest for the children under the circumstances – but it has also meant the very real re-writing of my understanding and expectations about what it means to be a mother outside of this model.

And it means that the past months and year really have been hitting up against every cliche of divorced / single motherhood:

*changes in visitation that have left me stranded for work (and ultimately requiring me to change my work patterns entirely)

*late and then unpaid child maintenance, that leaves us in real danger of not eating (thankfully resolved a few times over with help in various ways)

*the irony of being told condescendingly by my husband’s solicitor that ‘now I can learn to stand on my own two feet’ financially, even as previous arrangements for sharing responsibilities for our children were eroded

*the sheer exhaustion of what’s required in terms of looking after a home and four children, one still a breastfeeding baby, the stress of not being physically able to meet their needs and my own.

What this means for me now is that there are pieces of my life which will not make sense to many – and that places which once would have provided me solace simply don’t as my experience is too different now from what it once was. It probably also means that my mere existance is hard for some who don’t want to see this side of motherhood. I never expected to be here either.

I could easily eat up every moment of every day ‘just’ being a mother, that I could drive myself mad trying to ‘earn a living’ in the old school way alongside that, it means that in recent months I’ve spent a fair number of days of utter despair at the impossibility of what is needed from me and the lack of freedom inherent in my current existence.

It also means for me right now that I’m feeling a call to reinvent what motherhood looks like for me and how I live it. I know what I want it to feel like, at least the rough sketch of what I’d like to to feel like – free, powerful, sacred, loving, creative, nurturing, protective, honest, restful, kind. Something that makes me more, not less. I know the old maps for my situation won’t give me that (though I am certain many women have quietly walked that way and successfully before me, some visibly so). I’m willing to wait in the space of visioning until I can start to trace the path that will.

I know my allies as I begin are in the presence I bring to my own life, in the things that strengthen that presence, physically, emotionally, spiritually. I know they are in the connection with others – other women, other mothers, other men and families – but only where these connections are grounded in respect and kindness.

I have no tolerance left for meanness, hypocrisy, gossip, dishonesty. I don’t take those things personally anymore because I know now so clearly that when people approach relationship in these ways that a) they are not for me and b) it’s not about me. I also will not hesitate to protect myself from these things in whatever ways I must because these things are pernicious and cause harm far beyond what is commonly acknowledged.

I have every space in my heart and my life for the connections that are vital, full of integrity and shared purpose, and most of all truth, compassion, respect, and genuine love and kindness. These things too have the capacity to ripple outwards and deserve to be nurtured in every way.

There are a lot of things I haven’t figured out yet, like how the time for looking after all the things that require looking after will happen. I trust that there are ways that will start to open when I take time to sit in stillness and listen. I trust that following the heart of my own work and renewal and the pace it comes at will in all cases bring me to a better place of resolution than denying the very real work and responsibilities I carry day to day would do – and by that I mean, I hold responsibility to my children, myself and my home, as much as I do to ‘earning a living’ or fulfilling a calling.

These last two are not separate for me, and the calling is as essential to me as eating and breathing…but what I’m coming to in a round about manner is that I’m looking to live these things in ways that are no longer at odds with my self-sustaining, child-nurturing, home-creating which are equally and even more important, and which take REAL WORK, real time, real energy to keep going.

I don’t know how to get there yet. But I’m burning the old maps, the ones that won’t work. I’m giving myself permission to take the time I need to vision and to heal. I want this to come with ease, with joy, with freedom. I feel it can be done, though I don’t yet know how. But that feeling, that conviction, and sitting down to write it, is my starting point.

 

Giving time and space to death

My father died recently. He was 90 years old, and I’m certain it was utterly the right way and time for him, but it still came suddenly, and the waves of rippling change are just beginning to be felt.

I find that I want to give this space. Space for honouring him and his life. Space for acknowledging the changes in me that result from this shift in what I think of as a generational barrier between me and what’s beyond. That’s half-gone. And it changes things.

There’s not a lot I want to say right now. I’m going to be taking most of the summer to focus on my children and this transition, to give space to thinking and feeling and to my own body and soul weaving and healing.

But the things I do want to share now are these – these things that stand out for me on this cusp of change.

*Death, like birth, requires a sacred container for holding experience. This is true for the person passing, but also for those close, and it’s not just about the moment of passing, but about the moments around it, extending into time, before and after. It’s important that we give this to ourselves and our families.

*It’s good to acknowledge death. Even if you’re uncomfortable with it, say something to the family. We notice. We see who shows up. We appreciate the effort at connection and the expressions of love and sympathy.

*I wish I had gone to see my Dad in California before he died – I wish I had found a way to get there, no matter what, for any one of those moments of quiet life and celebration that I missed. That’s the only thing I regret, that I didn’t find a way to do that, and it changes my priorities significantly.

*Family photos are always a gift and a great thing to be taking time for, regularly, formally and in formally. I’ll be doing a lot more of that.

Family

My father gifted me with so many things, he was a primary care-giver for me throughout my childhood and into adulthood, in a way that few fathers are. He made certain that I had every advantage he could give me – thanks to him, I made my way to Smith College (I was one of the rare students to have a father who was a graduate – he had attended the School for Social Work), and then onward to New York University. He taught me a lot about spirituality and religion, and about living in harmony with the land. From my childhood, I remember his organic gardens, his morning yoga, his Saturday morning blueberry pancakes, his photography and his gifting me my first camera when I was about 4 or 5, chopping and hauling in wood for winter, tapping the trees to make Maple syrup in early spring, and so many other things.  His life and death have been a gift to me as his daughter.  For anyone who would like to read more about him and his life, there is a beautiful collection of words and photos here.

 


 

I’ll be writing and sharing here on the blog over summer, and back to normal in September in terms of classes and clients and such. There will be some great new things coming as in June I was so fortunate to be part of the very first MuTu Pro training in Orlando – I’m looking forward to sharing locally the core healing that this system brings for pre- and post-natal mamas.  We’ll be starting up some FREE walks locally (walking daily is a key part of the MuTu system), so if you’re interested in joining best way is to contact me on Facebook on the Rebalancing Woman page.

(Current clients and students not to worry as we’ll still be carrying on as usual and I will be in touch very soon, just landing from my time away and little people settling too).

Massive love and thanks to all those who have been so supportive in this time, and who have expressed their love and connection in various ways.