When Did She Grow Up?
Yes, she’s only two and a half but she seems so grown up all of a sudden.
Over the last few weeks, she's got steadier on her feet and she’s toddling around everywhere but it’s more than that.
At mealtimes, Ava is refusing to eat. Well not entirely but she will not eat anything if it is served on a plastic bowl or plate, she will only eat if it is served on a dinner plate like ours. We’re actually using a side plate but it’s at least the same type of plate. This girl knows her mind and she’s stubborn - no idea where she gets that from!! Now we’re on edge as she always had a tendency to chuck her plate on the floor to signify the end of her meal, fortunately, she has not done that so far with a ‘grown-up’ plate but we’re living in anticipation of replicating a greek wedding!
Ava is becoming so independent in many areas, we’re currently toilet training her; she’s been sitting on the potty and toilet since just before her first birthday and she’s managing really well so far. We got her a step so she can reach the sink herself, she loves to climb up and wash her hands after she’s been to the toilet. She also loves to take charge and clean her teeth. Obviously, we still give them a brush to make sure they’re clean but how grown up does she look standing on her step at the sink brushing her teeth?
My little baby, my last baby is growing up. I think I’m finding it harder to watch her grow up because I know she is the last.
Our babies are always our babies though, this morning, Maya asked me to brush her hair, she’s 11, I realised I couldn’t remember the last time I brushed her hair before she didn’t need me. I enjoyed that moment and it made me realise that I should treasure each time any of them needed me, as you never know when it’s the last!
Covid Lockdown 2020 (7th December 2020)
I had intended to write something during lockdown number 1 but, if I’m being honest life was just a little too crazy. Me and Andrew both working from home, were trying to homeschool Maya and Oscar and not only look after Ava but ensure her development didn’t fall behind. All of her medical and development appointments and groups were cancelled. Mum guilt crept in for all three of them.
One thing I took from that period was huge amounts of gratitude for still having work to do, we were fortunate but that still didn’t fix the issue of trying to fit it all in. Maya, who runs her own business (Unicorn Sparkles) was busy sewing, she started making headbands and scrub bags for the NHS, later she made and sold face masks. My little entrepreneur was in her element. She was also a huge help in looking after Ava, playing and signing with her, even doing physio or working on her phonics.
I think we all made changes to our lives during that period. I took the time to separate what I was running as one business and split it into two, soon to be three businesses. My blog moved to this new author page and rather than it being solely focused on Ava I decided to expand it to look at our whole family. The Snowdrop Story may still house a more Ava-related blog though at some point! As well as splitting out and separating the work I was doing I had to change the structure of my day to alleviate some of the mum guilt. Oscar needed support and encouragement with his school work, I spent the mornings when I didn’t have meetings, helping him get started with his school work and I would start work later in the day and continue working later. Towards the end of the summer, Oscar was starting to get emotional from spending so long away from school and his friends.
If I’m being completely honest, although it was a struggle I really did enjoy being in our safe little bubble away from the outside world. So much so that when Ava broke my Mac (I’ll come back to that!) that heading to the Metrocentre to get a replacement caused a mild anxiety attack that I had not expected. I realised at that point that I had to make sure that I did not get too far in not being able to leave the house without feeling safe. It probably wasn’t until the middle of September that I stopped feeling dirty if I left the house or touched anything. In reality everywhere else was probably a damn sight cleaner than our house having 2 adults, 3 children a dog and a cat cooped up with no cleaner coming probably wasn’t the cleanest environment!
And then there’s Ava. Well, lockdown 1.0 was the absolute making of her. She learnt to walk, started speaking more and more words and she is now able to communicate all of her needs via signing with some words thrown in for good measure. Developmentally she has come on leaps and bounds, she has such a cheeky personality and she’s very much finding herself.
When September came and it was time for the children to go back to school, it really concerned me. I knew they needed to go back for the social side but I also wanted to keep our family safe. Touch wood, so far we have all been ok.
It’s made me realise that yes we could shut ourselves away to protect from any nasties whether that’s virus, person or anything else, but could we really call that life? As long as we sensibly calculate our risks and chances and care for each other, we can still live our lives even if that does mean we are a little more cautious at the moment.
19 months old already! (27th December 2019)
This year was Ava’s second Christmas. She wasn’t really aware of what Christmas was but she loved all of the twinkly lights in the run-up and who doesn’t love a Christmas party … she had quite a few!
The last few weeks before Christmas saw Ava’s development come on leaps and bounds. She’s now 19 months and the milestones she hit this month have blown all other months out of the water.
She has started bottom shuffling (yey!!!), we gave up attempting to get her to crawl on the crawling track as she sat herself up at every opportunity (despite the chocolate mouse bribes waiting at various intervals along the track!) and slid her way to the bottom. It became a bit of a game for her and she certainly found it more amusing than we did after spending a good few hours one Sunday afternoon constructing the blooming thing.
We now have stair gates on the top of our stairs because, of course, they look fascinating to a little one on the go and it would only be a matter of time before the fearless little creature threw herself down them while we are running around the crazy place we call home. She’s also been trying to pull herself up to stand from sitting on the ground (she mastered it from sitting on her step a few months ago) but she can’t quite get her legs in the right position and I’m not sure she’s quite strong enough yet but I don't think we're far off. Each milestone seems like it’s a long time coming but, firstly, it’s quite interesting to see them broken down into the mini-milestones that we took for granted and did not see or consider with Maya and Oscar. Secondly, it makes each and every milestone achieved that much more special.
Ava is currently cutting her final baby teeth (with the exception of the very back molars I think - I can’t get to look that far back without risk of losing a finger!) I noticed yesterday that the final 3 (canines, possibly) all cutting together. Fortunately, Ava has never been troubled by any of her teeth coming through, which is an absolute blessing. She is a tough little cookie and nothing much phases her.
The biggest breakthrough we have had this month is with her signing. She started with ‘where’ and especially likes to use that sign either with a ‘woof, woof’ noise or while signing dog to ask where he has gone if she can’t see him. Another favourite of hers is ‘star’ when we sing Twinkle, Twinkle and the last few days she’s also added in her pointy finger for ‘what you are’. Ava will make some animal noises and makes sounds alongside her signs as well as signing stop, finished and more.
Ava has a wicked sense of humour and loves to show off her fake laugh as she has learned that it’s so infectious it makes other people laugh along with her. She is turning into such a happy little girl who loves to make others smile. She absolutely loves to pose for the camera at any opportunity. Her favourite toys this Christmas were her xylophone and glockenspiel (or more precisely the sticks that came with them, which she has only let go of to eat and sleep).
I absolutely love watching Ava grow and develop every single day, she brings so much joy to all of us and is a true inspiration. I really do feel like the luckiest mum, not just because of Ava but of all three of them; watching the bond between them grow is magical.
Where does the time go?! (6th November 2019)
I can’t believe it is nearly a year since my last blog post… where does the time go?!
I started to write a post around Ava’s first birthday but with all of the goings on, it got forgotten about. Here are some photos of her first birthday ... she loves cake!
I started another post on the anniversary of her heart surgery, but again, life got in the way. What a difference a year makes!
It’s Wednesday, I am just back from two very long days in Birmingham and preparing for 3 days in London over this weekend. Unusually, I have a quiet half an hour while Ava has gone for a nap and we are having a rare chilled-out day at home.
I am a busy mum of three and wife trying to run a home and a business simultaneously, which is a constant juggle. I have two days a week at home with Ava (as well as the weekends), those days are filled to the brim with activities that we both love doing. Tuesdays, Wednesdays and Fridays are normally my days given over to work and Mondays and Thursdays are our manic but fun filled days.
Mondays
We have a baby swimming class where Ava has come on leaps and bounds and loves to play with the other babies and toddlers. She has started standing up on the steps and holding on to the rail, she also loves to play with the watering cans and rubber ducks (& fish!). When we first started going swimming, although Ava had great head control on dry land, it was tricky for her to keep her head out of the water while I moved her through the water on her tummy. One of the other grandmas had a solution! We got her an inflatable neck ring, which we used during lessons so I could support and move her lower body without worrying about her dunking herself! She’s now started to copy trying to blow bubbles in the water. Everyone in the group loves Ava and most of the other regular swimmers in the pool know who she is too. It is so much fun being able to spend this time with her and watch her grow.
We sometimes follow this with a trip to the local baby and toddler group where Ava loves to play.
In the afternoon I run a baby signing class using Makaton. It’s open to any and all families but we do have a few babies/ children who require support in their communication as there isn’t another group, focused on Makaton through songs and stories, like it in the area. This has been a great opportunity for me to do more signs with Ava in a fun environment with others and encourages signing to be more mainstream. We swiftly run from our signing class to Maya and Oscar’s school where I have been running an after-school class, again sharing Makaton signs, with a fab group of children from reception to year 6. The kids race to get to us first so they can have a cuddle with Ava and they have been amazing at picking up and remembering signs.
These are some of the babies and my big helpers for the day at our Halloween-themed class!
With all of Ava’s exposure to signing both at home and in these environments I was so pleased when she recent;y started copying some of the signs in context. So far we have seen ‘stop’ and ‘finished’ as well as waving. She has also started making sounds to indicate ‘more’ and ‘bye, bye’. There are probably others too that I have forgotten. I am so immensely proud of what Ava has achieved already.
Thursdays
Our portage sessions at home have now just moved to Thursday mornings so we squeeze that in before we head off to Kalma Baby. I appreciate that we are so fortunate to live in an area where portage is available. This should not be a postcode lottery as the first 2 years of a child’s life is vital in developing that early education and lays down the foundations for the rest of their lives. (Enough of my rant!)
Ava has been going to Kalma Baby for just over a year now. We started after her heart surgery once she’d had time to recover and heal. One of the advantages that Ava does have, having Down’s syndrome, is her flexibility. She absolutely smashes it at Kalma Baby every week! Also, the fact that she is super light means that I am able to throw her around doing flips and cartwheels far more easily! We quickly found out that Ava loves Lycra/blanket swinging. It’s a really calming activity that we also use at home sometimes (I wish I could fit in a blanket and be swung!), she also loves bouncing and rolling on the yoga ball and being thrown around to the energetic songs which tire me out! She shouts at me when they finish as she wants to do more!
On Thursdays, we have a picnic in the car before heading to our group portage session. Yet again, I am so grateful for this session; we get to meet other mums who have children with varying needs, learning difficulties and disabilities. It opens your eyes to a whole new world that prior to having Ava I didn’t know a whole lot about. I certainly had never heard of portage before. This is the group where Ava first signed ‘stop’. Having access to this group is something I am very grateful for.
I have put life into perspective a lot more effectively over the last 18 months. Having a child with Down’s syndrome is slightly different from having my other two children, but it’s certainly not something I would want to change. I’ve almost forgotten what life before Ava was like, you just get on with what’s best for your children, no matter who they are or what they need.
From my two ‘typical’ days with Ava, yes there is a proportion of it that we wouldn’t be doing if she didn’t have Down’s syndrome but I probably would have filled it with another activity as I like to be busy and would have found something different, which would help with her development in other ways (& would have cost more money)
Ava does take more of my time than Maya and Oscar did, in terms of attending medical appointments but that has already reduced significantly compared to when she was first born and in those first 4 months while we were waiting for her surgery. In comparison, I know of other parents who have ‘typically developing’ children who have health complications and are in and out of hospital far more than us. Equally, there are parents who have healthy children who only found out their children had learning difficulties down the line. There are also those families who had healthy and typically developing children until an unfortunate accident who have to learn a whole new life completely unexpectedly. All of these families are fortunate though as they still have their precious children.
YOU CANNOT PLAN FOR WHAT WILL HAPPEN IN LIFE FOR ANY CHILD.
Enjoy all of the fun times together, no matter how often or rare they may be or whatever form they come in.
I had to share this photo of Ava posing for the camera when we went out for a meal for my mum's birthday! It's a new fun party trick that she's learnt that cracks me up!
An Open Letter to Emmerdale
An Open Letter to Emmerdale (6th November 2020)
Yesterday I started to write a different post but then the day happened and instead of sharing that one I felt compelled to write something different. I will share the other one another time.
You may well have seen the storyline spoiler for Emmerdale. Laurel and Jai are devastated to find out their baby has Down syndrome and decide to terminate their unborn child. Quite rightly the Down syndrome community are up in arms. From what we can gather the show only consulted Jane Fisher at ARC, a very biased individual and organisation that believes all children like Ava should be terminated.
I decided to write this blog post as a kind of open letter to the writers of Emmerdale, ITV and ARC.
The way you have decided to structure this storyline is not only offensive to people with Down syndrome and parents of people with Down syndrome but it undoes the work that the Down syndrome community work at tirelessly every single day. Day in and day out we battle, we battle against the outdated perceptions that too many people hold - society, medical professionals and as it seems, screenwriters.
My daughter, Ava is 2 years old. Prior to May 2018, I was ignorant about Down syndrome, and yes probably even feared having a child with Down syndrome. I was fortunate in that I was unaware through pregnancy and so did not have to deal with fighting against medical professionals and their biased views in order to allow my baby to live. There are so many women and their partners who are not so fortunate. Is it any wonder that 90% of people terminate when the information given can often be so one-sided? You may have seen the #DownrightDiscrimination campaign, not only do 90% of women choose to terminate their child in the UK but they are able to do so right up until the baby is in the birth canal, up to 40 weeks. Your storyline hurts that campaign, it hurts your viewers that have Down syndrome or a family member with Down syndrome, it hurts any steps forwards in building an inclusive society where Down syndrome is not feared but understood and appreciated.
Ava has changed our family for the better, she is an absolute inspiration, and she loves singing, playing and dancing like any other 2-year-old. Ava can communicate her needs to us through speech and sign, she makes people laugh with her quirky, cheeky sense of humour and she keeps us on our toes like any other two-year-old. She loves chocolate and sweets and doesn’t like bedtime in case she’s missing out.
How about this for your storyline as a more accurate portrayal but also supporting the work our community does …
Laurel and Jai discover their unborn baby has Down syndrome, and the medical professionals do their usual job of being ’sorry’, perhaps you even have that midwife or doctor who has read some leaflets from Positive About Down Syndrome and understands that there’s nothing to be sorry about. That makes Laurel and Jai think twice, they already know a child in the village with Down syndrome, things can’t be that bad, can they? They discuss the pros and cons they actually do some research rather than just listening to the outdated views. They discover that their child could live a fulfilled life, get married like Heidi, run their own business like Oliver and not only bring them so much joy but really impact the rest of the family and change them for the better.
Please reconsider this storyline and help support our work rather than push us back.
For anyone who reads this, you may wish to …
- Sign the petition against the storyline http://chng.it/9hfBxcTmZv
- Read about Positive About Down Syndrome https://positiveaboutdownsyndrome.co.uk/
- Read about the #DownrightDiscrimination campaign https://www.crowdjustice.com/case/downrightdiscrimination/
- Email ITV and ask them to reconsider viewerservices@itv.com
Please help in working towards a kinder, inclusive society that understands and does not fear difference. This is where you can step up and make a difference.
Here are some photos of Ava's cheeky face to keep you smiling.
Feeling Sad and Angry
I am very aware how lucky we are with Ava, she is absolutely incredible. She is full of determination and brings so much joy to everyone she meets. When reading posts from support groups we are in, both Down's Syndrome specific groups and others for children with various additional needs, it is very apparent that some people are having a harder journey than us. Does that concern me? Possibly, I know that things could change at any point, but isn't that the case for any child? We never know what is around the corner.
Why have I decided to write this post today? I have read a few posts on Facebook today, some have made me cry with sadness others have made me frustrated and more determined to make the world a more understanding place for Ava.
I'll start with why I've been sitting here with tears in my eyes...
When Ava had her surgery we knew that there was a chance things might not go smoothly and there were various possible outcomes. We were lucky. Everything went the best possible way it could have done. I think in this day and age we assume that with modern medicine, despite all of the warnings, we just expect things will go well. But statistics have to come from somewhere. Two facebook posts today, which happened to be in my feed directly next to each other, from two separate places highlighted that things do not always go to plan and we shouldn't take anything for granted in life. The first post was about twin baby girls, one had been fortunate enough to have heart surgery and was going home, her sister, too poorly to even have the surgery, had sadly lost her battle. The second post was a little girl, 3 weeks post heart surgery. Things had not gone to plan, she is still fighting her battle and staying strong but with complications along the way that have affected her little personality. I'm not sure what I would have done in either of those situations and it just makes me want to squeeze Ava that bit more when I pick her up later, how lucky am I to have those smiles, laughs and 4am feeds.
Why am I frustrated?
I read about a family who are unable to fulfil their dream of living in New Zealand because their youngest daughter has Down's Syndrome, and she is seen as a burden to the country. Therefore being denied a visa, despite being otherwise healthy and her family able and willing to pay for any support in school that she requires. A second article is about a man who has passed away because he did not receive the care in hospital that he should have received.
Why are our children or families seen as second-class citizens in some people's eyes? Why are they any less worthy of having a life that they, and we, dream of? Why can't people open their eyes and see what they could learn from these amazing, courageous children and adults?
I wouldn't change a thing about Ava (I would maybe change that she had to go through the battle leading to her heart surgery ... but she won't remember that, so is it really that big a deal?!), however, I would definitely change how health professionals, governments and society in general view people with Down's Syndrome as well as other additional needs and disabilities.
The 90% (6th July 2021)
I could easily have been one of the 90%, could you?
On Sunday I wrote a social media post about Ava, my youngest daughter, saying I would not have aborted her while pregnant if I had known then that she was going to have Down syndrome. I lied.
The truth is, knowing what I know now, I would not have aborted her. But the me back then? I didn’t know what I know now, I was naive and ill-informed about what having Down syndrome actually meant. I don’t know what choice I would have made. After all, it’s one of the things they test for in pregnancy so as far as I was concerned it must be a terrible thing to have, a burden on the entire family and quite possibly life-limiting. How wrong could I be?!
This week Heidi Crowter is bringing the government to court to change the law around abortion. Many people, myself included before this case, are or were unaware of the discriminatory law around abortion and babies. Children like Ava, who have Down syndrome, as well as those with certain other disabilities are not treated as equals amongst their peers during their mother’s pregnancy.
Had I known prenatally that Ava would have Down syndrome I would very likely have been offered a termination, probably more than once if I had not taken it up on the first offering. I would have had this as an option, to end her life, right up until she was being born. With Maya and Oscar, I would not have had the option beyond 24 weeks. My children are all equal, they each have so much to offer, an immense amount to teach and each one brings us joy in their own individual way. Equal to us and all who know them, but not in law.
It may not all be plain sailing with Ava, but it certainly isn’t with Maya and Oscar either! Each of them brings their own challenges and I wouldn’t want any of them to be any other way.
Yes, we have a few hospital visits each year for Ava to check how she’s doing (brilliantly BTW!), she also had heart surgery at 4 months old and will likely require further surgery in the next couple of years. You know what though? At each cardiology appointment or hospital stay, we did not see another child with Down syndrome, we did however see many children whose parents would not have been offered a late termination because hearts are actually pretty fixable!
We’ve all learned Makaton to support Ava’s communication too, actually, it’s been pretty fun and who doesn’t love to learn a new skill?! The biggest pain in the backside though … is challenging outdated perceptions in society, by medical professionals and apparently the law. That’s the biggest burden. Without needing to open people’s eyes to what is possible, to the joy and to help them realise that children like Ava are not any more of a burden than anyone else, our lives would be a lot easier, Ava’s life will be a lot easier in years to come.
So, why the 90%?
Nine out of ten women who find out prenatally that their child will have Down syndrome decide to terminate their pregnancy, for some this is after 24 weeks. It's not uncommon to receive the diagnosis after this point and a termination is currently an option at that point. Yes, some make an informed choice knowing all there is to know. Many are only given limited information or the potential negatives, not a balanced view. The things that COULD be more difficult, but as with any child, we never know what anyone’s future has in store. Why try and predict Ava’s future any more than Maya or Oscar’s? Do you know what your child’s future holds with any certainty?
It pains me to think that our path could have been very different, I could not imagine not having Ava in our lives. She is a lively little 3-year-old, she loves Waffle the Wonder dog (yes we know all of the songs off by heart), Numberblocks (& those songs too!), eating chocolate and singing nursery rhymes. She brings joy to our lives on a daily basis, she’s taught us all to slow down and to value the small things. She’s my greatest teacher and inspiration.
This week I stand with Heidi and with Aidan and fully support them in their case to ensure our babies are #EquallyValued.
Heart Surgery
It's 6th September 2018, today we had another cardiology hospital appointment, which has become a routine check-up to see whether she’s gaining weight, still responding to her medication and whether anything needs acting on. Up to this point, we’ve had some weeks with small weight gains keeping her on the same percentile line on her chart and some weeks with no gain. This was another of the latter. At 16 weeks old she’s still in first size and 0-3 clothes!
Our consultant agreed it was time to start making arrangements for her surgery and called the surgeons. We met with a lovely surgeon who talked us through what would happen during her surgery and her post-surgery recovery. It also included the possible complications and risks of the surgery. As I signed the consent papers I had a small wave of sickness come over me but it wasn’t as though we had any other option; she needs the surgery. Now it’s just a waiting game, waiting for the phone to ring to tell us they have a bed available for her and are able to take her in.
Surgery Day (26th September 2018)
We took the call on the Wednesday morning. The next 72 hours felt like a lifetime. We were to take Ava in on the Thursday evening for her pre-op and her surgery was scheduled for the Friday. We tried to keep busy throughout the days leading up to the surgery but it was hard not to think about it. Knowing that there was a small chance of complications or worse at the same time as putting on a brave face for the other two children was tiring. I kept visualising Ava post-surgery being told she was recovering well, it was a way to look to the future. That Friday was going to be the first day of the rest of Ava’s new and improved life.
All was going well, on the Thursday evening we met lots of the medical staff who were to care for Ava both during and post-surgery. It was a little concerning when the anaesthetist told us they may not be able to close her chest up after surgery due to her small size and that doing so a few days later would delay her recovery and potentially increase the chance of complications. We had also been told that due to her Trisomy 21 her recovery would likely be slower also.
Friday arrived and we got to the hospital for 8am. We didn’t want to be waiting around at the hospital while she was in surgery so we had planned to go home and tidy the garage! The time we were told she’d be taken for surgery came and went, we had a hungry little girl that we were unable to feed as we just watched the clock tick by until we were asked to wash her and gown her. At 1.20pm we were then escorted up to theatre. I handed Ava over to one of the doctors as I gowned up and followed them into the operating theatre. It was massive yet filled with so many machines. I waited with Ava as she was put to sleep, the time passed in the blink of an eye and I had to leave my tiny baby girl in the capable hands of the surgical team. We were told it would take 6-8 hours so we headed home. It was much later than planned so tidying the garage was out of the question.
We collected the other children from school, made some finger puppets with them and headed for a quick dinner at the pub. As our food arrived at 5.50pm we got a phone call, only 4.5 hours after carrying Ava into theatre her surgery was finished. All had gone well and she was on her way to PICU. We wolfed down what we could manage with a slightly sicky feeling of anticipation of how we would find her.
Ava's First Christmas (1st January 2019)
With having two older children you almost forget that Christmas is a non-event for a young baby. We’ve been so used to getting up to open stockings in bed, over recent years, before going downstairs for the rest of the presents and bacon sandwiches.
This year was not much different, although Maya and Oscar went to open their stockings in bed with Mamma instead of us (I don’t think they could get us to wake up!) while Ava slept soundly in her cot next to our bed. We got dressed and went downstairs, the other two were excited to open their presents and see whether Santa had drunk his Baileys, Ava was still soundly asleep with the monitor on so we could get her once she awoke.
When she eventually made it downstairs she showed some interest in the colourful wrapping and ribbons. The sensory toys she received seemed to go down just as well with adults and children alike… little sticks with ribbons and bells on were played with by all, along with squishy sensory balls, fibre optic light, an infinity mirror and a silver blanket.
Later that day she had a feed just before dinner, fell asleep and remained asleep while we all ate (not something that I usually get to do!), she woke up just in time for dessert, I think she smelled the custard!! So Ava’s Christmas dinner consisted of a bowl of custard!
Leading up to Christmas Ava had been quite poorly with a really bad cough and cold, I turned into a super paranoid mum, thinking that we could end up spending Christmas in the hospital if she got worse. Thankfully that never happened, and it made the day that bit more precious. I think Ava’s gift to everyone else was her cold!
Ava is developing such a fun personality, and that is something that has been captured by the many photos taken by everyone over the Christmas period. She loves a cuddle, she’ll happily sit with people and has a gorgeous way of just snuggling in. She has a super cute smile (biased, I know!) that often turns into a little bashful grin like she’s up to no good. She’s also starting to gain her strength in sitting up just holding someone’s finger and has found her legs in the jumparoo. These small milestones really are that much more special. I can’t wait for next Christmas with her when she’s a little bit more aware of what it’s all about.
I hope you all had a very Merry Christmas and wish everyone a fun and adventure-filled 2019.
Ava's Arrival
You may wonder why I am writing this blog and documenting some of our life for the world to see, I'm sure at times I will wonder the same. In the past, I would have said I am certainly no writer and would not have thought for a million years that I would be writing my own blog, but here I am, not just writing a blog but having also written a children's book with more in the pipeline!
On the 16th of May 2018 a little ray of sunshine, named Ava, entered the world and our lives, everything was not exactly how we had expected or planned. On my first night in the hospital I lay there mentally writing a blog entry to document my first few hours with Ava (I'm still not entirely sure where the idea came from) in the hope that the process I went through in organising my thoughts and feelings during that time could benefit someone else going through the same or similar.
Now, I do not believe in coincidences (I used to but that's a different story) and on leaving the hospital, after a few more mental blog entries, a number of family members and friends who had not been aware of my blogging thoughts also told me they thought I should write a blog for the very same reasons I had come up with, so the rest, as they say, is history and this is where the story begins (although like any good movie, there may be some prequels from time to time)!
Ava's Arrival (16th May 2018)
Everyone always says to trust a mother’s instincts, the moment Ava was handed to me I suspected from looking in her eyes and at her little purple unresponsive body that she had Down’s Syndrome. She was taken almost immediately to be given oxygen and put under the heat lamp surrounded by a crowd of doctors. All of the time I asked whether she was ok and whether there was anything wrong but did not dare to ask the question I already knew the answer to as then it would all become reality.
It seemed like forever before she was handed to me, she was floppier than I remembered my other babies, I did not realise that this was also an indicator of Down’s Syndrome. We tried to feed, but unlike my son who latched on straight away and fed for England, Ava was able to latch but one or two sucks and she gave up, nothing seemed to help her feed for longer. In the end in order to get some fatty milk into her we ended up with a midwife sucking milk from my nipple into a small syringe to feed into Ava’s mouth. Any breastfeeding mother knows how difficult it is to try and get that first milk to come through and hand expressing with an audience and someone trying to catch every drop certainly doesn’t make it any easier!!
We had the luxury of just the three of us being left in the delivery suite for quite some time after Ava’s birth. I mentioned my concern about Down’s Syndrome to my husband who quickly reassured me that all babies looked like Winston Churchill and he certainly couldn’t see what I saw in her eyes. Despite this, my instincts were still telling me I was right and he was wrong. We took some photos of Ava being held by me and her Dad to send to our other kids, parents, siblings and friends. I made sure that I took them at an angle so her facial features were not as obvious, I wanted to be sure one way or another before revealing to the world.
Once we were on the ward my husband stayed until we got settled, it didn’t take long for Ava, she was the most chilled little thing, but still did not appear hungry. My first daughter had been similar so I wasn’t too worried at that stage. After my husband left, that’s when I started googling the signs of Down’s Syndrome in babies and trying to find out whether it was normal not to be told if doctors had suspicions.
I inspected her hands for the single palmar crease; it wasn’t there, she had two like me. I moved to her feet, did she have sandal toe? No, I inspected my own toes to compare. She didn’t appear to have a larger-than-usual gap. I looked back at pictures of my other children to compare their facial features, were her ears lower? Was her nose different? She appeared to share some similarities with her brother but her eyes definitely indicated Down’s Syndrome.
Throughout the night I continued to attempt to feed her with little success, one of the midwives came in to see me and I asked again if there was anything wrong with her, I remember her asking what I thought was wrong but yet again I couldn’t bring myself to say it. I tried to get some sleep despite the other three babies on the ward crying and the other adults snoring.
When morning came my husband returned, and it didn’t seem long before the consultant came to see us, his question … ‘Has anyone told you they think your daughter may have some sort of syndrome?’ My instincts were confirmed and our rollercoaster and learning journey began.
Mixed Feelings
The 36+ hours after the initial conversation with the consultant, and waiting for a confirmed diagnosis were the hardest part of our journey to that point.
One minute there was anger and so much upset that nothing had been picked up on any of the pre-natal scans; I'd had quite a few extra scans as had been weekly from 32 weeks due to Ava measuring small. I couldn't understand how her diagnosis could go unnoticed for so long, through so many scans, surely the reduced size should have indicated a possibility?! I just kept crying, actually sobbing my heart out, asking anyone and everyone who came into our hospital bay why and how it had gone unnoticed. I also kept asking over and over again whether it was my fault ... had I done anything during pregnancy ... I was reassured there was absolutely nothing I'd done/ not done.
At times I questioned whether I was being punished for all sorts of things ... wanting a third child, wanting a perfect little family and many more things. But then I looked at Ava and realised she was most definitely not a punishment, she was an absolute treasure who I could not love any more than I already do.
I also felt a huge amount of guilt ... had the diagnosis been given during prenatal screening what would we have done? I will freely admit my ignorance of raising a child with Down's Syndrome, as such, at the time we probably would have considered the possibility of termination. We had the screening as, with two other children, at the time it seemed important to make sure our third baby would not adversely affect the lives of our other two children as they continued to grow up. As I looked into Ava's beautiful big eyes and my heart melted with so much love I couldn't imagine not having her in our lives. It was also clear that she certainly would not have an adverse effect on anyone's life and over the coming days and weeks it became very apparent just how much she was going to enrich our family.
While waiting for the confirmed diagnosis we did a lot of googling and searching through various Down's Syndrome websites and reading countless blogs written by other parents (all better accounts than mine will probably be!!). It became clear to me that although there were going to be some difficulties for Ava along the way, there was going to be very little that would be impossible for her to achieve if she wanted to and had the right support and although she may need a little extra care with some things as she grows up, this really wasn't going to be detrimental to our family or to Ava's quality of life.
Each time I look into Ava's beautiful big eyes my heart melts with so much love; I realise how lucky we all are to have her in our lives and I could not imagine her not being part of our family.