Kendal Calling

Kendal is calling. Removals are coming next Friday. Shelves are being emptied and boxes are being packed with their contents. Trips to charity shops to offload unwanted stuff. Goodbyes to friends and neighbours, and feeling overwhelmed by how many people I want to see, and who seem to want to see me, before we go. Yet life goes on and the girls still need me to just be normal and take them to the park and run ordinary errands when life seems way less ordinary right now.

It all got a bit much today and I had a full blown panic attack. Brought on initially by seeing the salad spinner being packed into a box. Yes, triggered by a bloody salad spinner. A salad spinner that I really needed, yes couldn’t do without, for a meal I had planned with friends at my house this evening. I love the fact that my partner has organised all the packing and is being very pro-active, but to pack all the cooking equipment away when we still have but 6 days left until removals arrive?! So, the cooking equipment was unpacked but I still had the imminent feeling of a loss of control.

Our house is no longer ours, contracts having been exchanged, our buyers visiting (for the third time) this morning, and a last goodbye meal with the neighbours last night. Every room in the house is in utter chaos. And so suddenly I felt that it was now all real, thanks to the salad spinner. I can no longer be in denial as my life is packed into boxes around me. I ended up cancelling my meal and decided to have some time and space to myself while Gastropunk catches up with an old pal for one last drink. A bar of mint Green and Blacks for company and I am absorbing the reality slowly but surely. This time next week we will have moved out and will be staying with family until we move into our new house on Tuesday 1st September.

I just want to be there.

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A Reply to Your Comments

It has been remarkable how many people have read and commented on my blog over the last 24 hours. I have been totally overwhelmed by the kind and insightful comments people have left. The whole point of blogging about the diagnosis and how we coped was mainly to help others in a similar situation and to provide myself with a record of those early days. I certainly didn’t intend on portraying myself as some kind of amazing and beautiful human being which some of the comments on Facebook seemed to suggest. 

The whole point of this exercise was to show people how you cope and get through these difficult times, and that it can happen to anyone. I felt quite uncomfortable by many of the comments that were left and I nearly deleted some of them, but I did not want to offend in this particular instance. I loved the fact that some people could relate to my situation and that some of them were in it now. I loved the fact that my writing made some people cry and become emotional. Yes, it was meant to. How can I write effectively about that time and not portray the depth of the emotions that were experienced. The fact that you may have cried is a good thing, it means that my writing managed to convey this. I loved the fact that it has helped some of you understand more deeply the difficult times some families have to go through to get to where they are today. And I love the fact that I am getting the message about Downs Syndrome out there.

What I do not love is people telling me that I am amazing. I am not. I am a pretty opinionated individual who finds it hard at times to tolerate people I find irritating. I am honest, and honesty is not something people always appreciate. I am selfish and I am always fighting to have time to myself. In fact I must be pretty damned similar to most of you out there. So please, with the greatest respect, do not tell me I am amazing. Most mothers in my situation would have done the same as me, although I appreciate that some may not have been able to get past the initial feelings that I experienced and with less support I may well have been one of these people. 

Above all, I am a mother that has had to learn about acceptance a little earlier than others. I believe that we all have to accept our children for who they are. They may support a different football team to us, they may end up believing in a different god, they may not want to be the gender that they genetically are, they may love someone that you don’t approve of, they may love someone of the same gender, they may not be as successful as you would like, they may take drugs, they may have a disability. The list is endless. Occasionally parents can’t get past these obstacles, or what they perceive as obstacles. For us we had to start learning about acceptance the day after Bessie was born. But we all need to learn about accepting our children for whom they are at some point. And for those that can’t, well, that’s a different journey. 

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We Need to Talk About Bessie

2013-06-20 13.21.16The morning after Bessie was born my little 3 year old Binkle came racing into the ward, accompanied by a beaming daddy, excited to meet her little sister. I was rather excited by the giant bag of Kettle Chips and several chocolate bars they had brought me. Bessie was born at 12.21 a.m. so I had spent most of the night not sleeping, and awake with the surge of adrenaline and excitement about giving birth. The confusion I had experienced upon meeting her had subsided and I had spent the night falling in love with this sweet little sleepy girl who did not want to feed much. I hadn’t really questioned the fact that we had been left alone all night and had not been checked upon once by the midwives. I hadn’t realised we hadn’t yet been given our Red Book. The first person I had contact with since we were moved onto the post-natal was the dreaded Bounty Woman who was trying to exploit my vulnerability post-birth and make me agree to parting with lots of cash for photos of baby. Not likely, love.

After Binkle and daddy left to go for a walk in Trent Park, I spent a long time getting Bessie to feed. It just wasn’t happening. A fairly useless woman came and tried helping me with the breast feeding, but realised that something was amiss. After a little while a midwife came along and diagnosed jaundice and explained that they would have to rush her down to the Special Care Unit (SCBU). The next hour or so is a blank. At 5 pm I was called down to the SCBU to meet with a paediatrician to have a chat about Bessie. Upon entering the unit I saw Bessie wired up to a machine, under bright lights and a nurse trying to feed her. Daddy and Binkle were at home having dinner.

I stood in shock as the Doctor explained to me that Bessie had characteristics that were indicative of Downs Syndrome. I had no one to turn to, no one to hold me. No one to tell me that things were going to be alright. I had a Doctor trying to explain to me that my daughter may never walk or talk, but hey, here’s some leaflets explaining the condition and how to apply for disability living allowance. I stood in absolute shock, telling them that no, I didn’t want this, I hadn’t signed up for this. And as I was saying these words, the voice inside told me of course you have signed up for this, you made her. I didn’t even know if I wanted her and I certainly didn’t know if I loved her. All I knew was that my world had been turned upside down, back to front, and inside out, and I just didn’t even know if I could function.

I needed time. I left that room with Bessie in it, and the nurses organised a new single room for me away from the rest of the ward. I had to tell her daddy. That phone call I made was one of the most difficult I have ever had to make in my life. Binkle was rushed to our neighbours for an impromptu sleepover, and Gastropunk came to the hospital. In all the 8 years we had been together I don’t think I had ever seen him cry. He held me and told me that we were in this together and that we would always share the responsibility absolutely equally and that we would do whatever we needed to for Bessie. I don’t think I have ever loved him more than in that moment. He had been eager to have more than one child and I had been happy with just one. He had certainly talked me into another, and must have been worried that I might resent him for this. Now that could not be further from the truth.

I struggled with the diagnosis; we struggled with the diagnosis. It took time for us to realise that she was not Downs Syndrome, but that she happened to have Downs Syndrome. Our daughter, our little girl, just happened to have an extra chromosome that would forever affect the way society would view her. She spent a total of 10 days in the SCBU and in those days I became like a robot. One night spent in that isolated room up on the post-natal ward was enough to make me go insane with the incessant hum of the air conditioning unit, the sounds from the neighbouring ward, the looks of sympathy the midwives had, and dare I say it, but the embarrassment of them. Yes, those very midwives who had left us completely alone and unchecked. They had all known before I did. I am sure they were relieved when I chose to check out and spend my nights at home with my partner and eldest daughter in those bleak first 10 days.

Life in the SCBU was the turning point for me. The nurses there had seen it all before. They knew how to handle me, they knew what to say. They knew my emotional state and what to do when I returned from my lunch break and broke down on them. They were the ones rooting for me when I started expressing my milk, for they knew that meant I was going to keep my baby and had gotten over the worse. As I started producing too much milk and had to freeze batches, they were the ones whooping for joy and encouraging me. The paediatrician who had given me the initial diagnosis became someone interesting to talk to whilst on her daily rounds.

The 10 days in the SCBU gave me the time with Bessie by ourselves that enabled me to process the information. I had a routine. Lunchtimes were spent sitting by The Ridgeway on a bench near the petrol station sobbing into my sandwiches and Mars Bar, imagining scenarios of living with an adult with Downs Syndrome, imagining that my freedom had forever been taken from me, and not knowing how to cope with my baby. The mornings and afternoons were spent watching her sleep under the UV lamps, giving her cuddles so she knew what physical closeness was, changing her nappy and feeding her. In a short time we had progressed from a feeding tube to bottle feeding. And two days before she left the unit she had learned to breastfeed a little. It took 6 weeks and grim determination to establish breastfeeding, understanding that the act of this type of feeding would only help to exercise the muscles in the mouth and possibly aid future speech and language development.

The night before Bessie was due to be discharged, Binkle stayed with her auntie and Gastropunk and I went out for a”celebratory” dinner, which consisted of us mainly crying into our curries at the local curry house and unable to eat much. We were so nervous about the future and whether we were strong enough to deal with it. The first two weeks of her life was very similar to going through bereavement. The last two years have been some of the happiest times I have spent. Not only did we get past our grief, but we embraced our beautiful and delightful little girl with all our hearts. She has changed our lives beyond recognition. I have learned so much about acceptance and unconditional love. This little girl with a learning disability has mastered so many Makaton signs that I have lost count of the number that she regularly uses, has learned to crawl and climb and has had the power to charm every single person she has met.

A diagnosis of Downs Syndrome is really not the worst thing that could ever happen. I don’t understand now why testing for DS is all so negative and why having DS is a bad thing. I do, however, understand how terrifying it is to receive a diagnosis of DS, especially when you have no experience and understanding of it. I am so glad I never knew until she was born, else I might have made a really bad decision. Meeting and loving Bessie has filled my world with happiness and contentment. Now I have two beautiful daughters instead of just the one.

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Born Again

Wednesday 19th June 2013, the day before my late grandfather’s birthday. I had been up since 4.30 a.m. doing some last minute exam marking to earn a bit of extra cash. I couldn’t sleep in any case as I was 36 weeks pregnant, and the morning sun was enticing me out of bed with its light. A cup of hot tea in the garden listening to the dawn chorus as it started. My ankles were swollen, my back was a little tender and for a couple of days I had felt a little odd. Overdoing it, probably, moving boxes into our newly extended loft so that our almost-three year-old Binkle could move into our room. All that needed to be done to our loft was to get it carpeted, which was all organised. Maternity leave was due to start in two days’ time so that I could enjoy the last four weeks of pregnancy and take myself out to lunch, get my hair done, relax and do some reading and crochet before the onslaught of newborn baby plus toddler to look after totally overwhelmed my senses.

I went to work as usual having planned lessons on shape transformations for my Year 7s and inequalities for my Year 10s. As the morning progressed I kept having back pains that came and went, and made many mistakes in my teaching such as getting my inequality signs the wrong way round. I kept having to sit down. I definitely shouldn’t have jumped to the left and to the right whilst demonstrating what a translation way. It really wasn’t a very good idea. After lessons, the maths department had to go and be filmed for the forthcoming Staff Entertainment video that is somewhat of a tradition for everyone to watch at the end of the school year. I played a character from Les Miserables, and happily went home after lunch to attend my 36 week check with the midwife. I remember being distinctly uncomfortable as she examined my bump but she assured me that the head wasn’t engaged yet. My pregnancy had not gone as smooth as my first, with a threatened miscarriage around the 11th week, and a feeling that something was going to happen. I wasn’t sure what, but I knew deep down that something was going to happen. Something I had mentioned in passing to one of my colleagues at some point.

It was the hottest day of the year so far, yet I decided to walk the mile and a half back from the Church where my appointment was held; rubbing my back as I walked to ease the dull ache that kept coming and going. I got home and made myself a sandwich before I had to leave to collect Binkle from the child minder. Brie, bacon, rocket and tomato. It was bliss.

06_June CalendarAfter getting Binkle ready for bed I had to attend a meeting about the Riverford Box Scheme that we have been subscribing to for some ten years. So off I went back to the same church that I had gone to earlier that day, deciding to drive this time. Throughout the meeting my Braxton Hicks were getting awfully strong, and I finally collapsed when I got home thinking I had really overdone it, and that I needed some pasta. Whilst Gastropunk was in the kitchen preparing me some pasta, I decided to go and wash my feet in the sink to freshen up a little.

And that’s when my waters broke. Faced with an unexpected situation, I tried to ignore it, remembering I had to go to work the next day. After a few minutes a very large gush made me realise this was not going to be the case and I remember calling down the stairs to hurry up with the pasta as I was in labour. At 36 weeks this was not the birth I was planning. Having had a beautiful home birth with my first child, we had a birthing pool at the ready for this one too, and my aunt was ready to be called at the drop of a hat to come and look after Binkle whilst I pushed my second daughter into the world. The hospital told me to come straight in. We frantically packed bags for baby and I. I called my lovely neighbour who came and stayed the night. I called in work to let them know my maternity leave was starting NOW. Phoned mother-in-law in Derbyshire who was leaving for Canada in the morning. My aunt was in France. I stuffed pasta into my mouth as fast as I could. These contractions were starting.

The journey in the car to Chase Farm Hospital was only a half an hour but it felt like a lifetime. I was terrified of going to hospital but took solace in knowing that I could get through birth easily by using the techniques that had worked so well for me the first time. As I struggled across the car park between contractions, we laughed at how ridiculous the situation was and how excited we were to meet our daughter. The thought of anything “bad” happening had never really entered our minds.

The delivery room was a far cry from home with its bright lights, peeling paint on the walls and midwives that were obviously overworked. As they wired me up to a monitoring machine they explained that they would make the room a home-from-home, but that I could not have an active labour. I explained that I would happily tear the wires out if I couldn’t get myself into a position I was happy with. I laughed at the home-from-home comment as I recalled my lovely lounge with its birthing pool, candles, iced lollipops and my own choice of music the first time.

As I pushed my daughter into the world some two hours later all I remember thinking, whilst bearing the agonising lower back pain, was that I needed to see her face. I just needed to see her face to know she was ok. When I held her in my arms and I looked at her face for the first time, it was not love I felt but confusion; she did not look at all how I had expected. The midwives went about their business quietly. I don’t even remember them talking much to me or congratulating me on the birth of our baby. I do remember being asked if I wanted a meal and them bringing me possibly the worst fish and chips I have ever attempted to eat.

I do remember that they never answered my question “Is she ok?”

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Ally Pally Musings

After my weekly trip to the Challenge Group, I took a stroll with the buggy through Muswell Hill, bought myself a bag of Tyrells crisps and a latte frappe and went and sat in the sun outside The Grove Cafe in Ally Pally park. Noodle asleep in the buggy, I with my lunch and my thoughts, and London looking pretty handsome on the skyline. 

Whilst sitting on my bench I realised I was sitting near to a group of young mothers who were sitting on the grass, babies and lunch strewn everywhere. Babies crying, sleeping and having nappies changed. I could only assume they were a bunch of NCT friends. It made me think of the wonderful group of friends that I made by joining the NCT and attending ante-natal classes together before the births of our first babies. 

It was over 5 years ago that I walked into the Union Church Hall in Crouch End with my partner, having paid over £200 to attend a block of classes that would help us sail through childbirth and understand how to look after our newborns. Or so we hoped. Childbirth aside, I just really wanted to meet some friends to help me through a year of maternity leave. And for that reason alone, it was the best £200 I ever spent. As I walked into the room I sat down next to this beautiful glamorous blonde woman who looked incredible, as sweat dropped into my Birkenstocks from my long day at work and the muggy atmosphere outside. No way would she want to be my friend, I remember thinking. As each set of couples walked into the room I think we all were wondering who we would get along with the most. Such a variety of people, but at least their was another teacher in the room I thought as we all introduced ourselves one by one. Being North London, there had to be a psychotherapist and chick lit author, a TV director and the owner of a Crouch End Boutique. Out of 8 of us women there, 7 of us would still be friends five years later. A pretty damned good statistic. 

I was thinking of these friends of mine today as I sat and watched this set of newbie mums and babies. An introduction to motherhood must surely be one of the most challenging times in a woman’s life. As each of us gave birth and shared our story, and as each of us experienced the pain, and sometimes rejection, of breastfeeding, we were all there for each other. The sleep deprivation, the loneliness, the challenge of a changing relationship with one’s partner and having someone to laugh with, to cry with, to vent one’s frustration with. And then the second babies came for most of us. We all needed each other. We all had our friends from before, and still do, but there’s nothing quite like the formative experience of new motherhood to bond women together. This was most poignantly realised when one of us had to cope with the diagnosis of a disorder that she was unaware of in her 3 year old boy, and when another had to rebuild her life after her partner walked out on her and their two children. And when I received the diagnosis that my second daughter was born with Down’s Syndrome. When the hard times came, we were all there for each other. The hugs, the laughter, and the bonding of shared experience. 

And one by one, we are slowly moving away from each other. But only geographically, I like to think. We may not be in touch for weeks or maybe even a month at a time as we all have such busy lives and move in very different circles, but we are still there for each other in spirit. A picnic and party is being organised for June. I cannot wait to see my NCT buddies again, I miss them. 

My friends, my soul mates. And just to think, it all started with a couple of lines on a pregnancy test kit. 

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Challenge Day

Every Friday I go to a wonderful play group in Muswell Hill called The Challenge Group. It is part of the WAVE movement linked to St James Church, which stands for We Are all Valued Equally. The group is especially for parents and carers of children with disabilities, and has volunteers that play with your child while you have a massage, or need a trip to the loo in peace. There is even tea, coffee and cake. For free. The cake is always excellent thanks to the skills of one amazing woman who is bringing up three young boys, two of which have additional needs, all by herself. It really is impressive not only that she has time to make cake, but that it’s among the best I have ever tasted. 

I look forward to Fridays. Not just for the coffee, cake and massage, but to chat to other mums who also have a challenge in life that they are facing, such as coping with a child that has a rare genetic disorder that means they need round the clock care, or a child (or two) with severe autism or, like me, have a child with Down’s Syndrome (DS). It’s wonderful to be among mums that don’t ask the same old questions when they meet you for the first time, and instead are free to talk about anything in a safe and supportive environment. To be honest, I don’t find life particularly challenging having a child with DS, but I still love to go along to the group. I think having children is a challenge for anyone regardless of whether or not their little ones have additional needs. But I consider myself lucky; Noodle is a complete delight to spend time with and I look forward to my days off with her. 

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Nerves, damn nerves and logistics

So this evening my stomach is tied up in knots thinking about everything we have to get organised over the coming months. A school place for Binkle, a nursery place for Noodle, finding a house to buy or a house to rent and selling ours. You know, the usual stuff. But in addition we need to renew our buildings and contents insurance policy for our few remaining months here, and look into getting a life insurance policy that has been niggling at us for ages. Not to mention making sure that Noodle’s child development team will have been correctly transferred to our new home town so that we can get all the help we need in completing the EHCP (Education and Health Care Plan) as soon as possible so that in a year’s time she will have all the help she needs in starting pre-school. It’s all a bit of a headache really. 

What makes it so hard is that we are moving to Kendal which is a good 4.5 hours drive from here (longer with kids and their associated toilet stops, or a very stressful 3 hour train journey trying to keep them in their seats and not completely lose the plot). Viewing houses and nurseries is difficult under these circumstances. We did it last weekend and managed to view two schools and a house in one day before the kids went into virtual meltdown even before we had arrived at our holiday cottage in the evening, after which time we also went into meltdown. We were fortunate enough to be invited to a fabulous music therapy group and a play date the next day, which considering we didn’t know anyone in Kendal when we made our decision to move there (a couple of months back) is pretty good going. We were in serious need of that therapy after the previous day I can tell you! 

I keep telling myself that all these things that are worrying us will work themselves out, logistics aside. And at some point we will find a house that we will be happy in. 

One thing that is keeping me going is the knowledge that we already have this super music group to go to each month and that we have met some very lovely people in a short space of time. It really is amazing how other parents of children with disabilities open their arms and welcome you into the fold. We really do feel so lucky. Houses, schools and nurseries will eventually happen. They kind of have to. But the most important thing is finding a community of people with whom you feel supported by and who can offer friendship. I do actually think we might just have fallen on our feet as far as that is concerned and that is what I will hold onto over the coming months. 

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