Lisbeth Chilcott - 5 Apr 18
Olive was 7 days old when we got the results from her MRI scan. We were told, in not particularly nice words, that Olive had suffered quite extensive brain damage to the area that controls her motor skills. The impact of this, they told us, is that they expect her to have severe movement difficulties and could require a wheelchair. Following numerous conversations with consultants we were also told that nobody could accurately ‘predict the future’. Babies brains do have the capacity to make new pathways, so how this damage will actually present itself in the future is unclear.
I’ll be honest, it can be very difficult living with the uncertainty – especially when the only diagnosis you have been given includes the word “severe”. Being a new parent is worrying enough, and we have an extra layer of concern. A big layer that hovers like a dark cloud. We don’t know how dark the cloud is going to get. And I am hyper sensitive to how Olive is progressing in comparison to other babies. Every tiny thing. Things I didn’t know were “things”, have become things. However, I have found various coping mechanisms to help me stumble my way down this unknown path, and to enjoy it as much as I can. I thought I would share them here as they could be useful to anyone going through something similar. Many of these are relevant to any new mum!!
- Stay away from google
Of course, it is fantastic to educate yourself about the problems you or your baby might face. But ‘googling’ will only terrify you and probably show you things that might not ever be relevant to you (but will worry you that they might be). Only talk to the experts – for us that is our paediatric consultant and our physio. These are the people who know Olive specifically, they know her history and therefore understand her progression. I write a list of questions to ask them every time I see them. They always say they ‘treat Olive, not the MRI scan’.
- Don’t be afraid to be “that parent” that makes a fuss
I am typically a very amenable person – when it comes to dealing with people I don’t know at least. I have found with this situation that we have had a lot of conversations with medical professionals and come away feeling overwhelmed or that there is a part we didn’t really understand, or that we hadn’t really received the service we had been expecting or had been promised. There is a lot of complicated and essential information to take on board! To start with I didn’t raise my questions or ask for anyone to repeat or explain what they had just said as I was far too self-conscious and worried that I was ‘causing a fuss’. I have felt upset, disgruntled and stressed out following these conversations – and totally unnecessarily. I am learning to disregard any worries of being judged for being stupid or a hassle. I have enough to worry about and my child deserves the best, so I will ask my questions, I won’t leave until I am happy that I understand. The extra 5 minutes it takes a professional to explain something to me very much outweighs the 5 days of worry I would have if I hadn’t asked.
- Don’t shy away from new parent groups
I am hugely grateful for my NCT group. They are an amazing group of women and I don’t know where I would be without them. When we had Olive I was worried that I wouldn’t be able to connect with the group because we would be facing different problems and my baby wouldn’t be keeping up with other babies developmentally. However, there are still a million challenges that remain the same for all new mothers – sleep, vaccinations, weaning, nappies, husbands… etc. I am so glad to see them each week! We go to various baby groups together, we meet for walks or cake or cinema dates. And yes, Olive is not as advanced as the other babies, and perhaps that gap will only increase. But don’t underestimate the joy and relief of having a group of new mum friends who I can share all the normal new mum highs and lows. And a group of mums who also all know the additional challenges we face, and can empathise. I am so glad I didn’t shy away from ‘joining in’ and I am extremely grateful for them.
- Do all the baby classes you intended to
I almost didn’t. I worried that people would notice my baby couldn’t keep up. I worried that people would know my baby was different. I worried that people would ask me questions. None of this has happened. We have attended Baby Yoga, Thula Mama, Aquanatal and Rhythm Time, and we’ve both loved all of them (well, baby yoga was a bit weird). Olive is happy to be sung to, splashed around, danced with. And actually, I think this is all good for her – she gets a lot of different sensory stimulation, opportunities to learn, focused one-on-one time with mum and socialising with other mums and babies. It has also been brilliant for me – a focal point for the day, a reason to leave the house, connecting with other mums, and taking the pressure off providing all of Olive’s stimulation.
- Go outside
Even if you don’t do any classes, they aren’t for everyone, try to leave the house. Though there are certainly days when I hibernate, I try to do something outside the house each day. Pop to the shop, walk to the park, stroll around the block. It can be a mission to get outside, but the vitamin D and fresh air is worth it for you and baby. For a while, walking was the only way I could get Olive to sleep. It was quite nice to pop her in the carrier and listen to a podcast or an audiobook. It was actually a nice break from parenting! But be careful not to tire yourself out, at the end of your walk you have an awake baby to look after!
- Choose who to talk to
We were told “don’t be afraid to use your support network”. We didn’t really know what that meant as it turns out that generally George and I are quite proud and not used to asking for help. But my tip would be – do use this network, and learn to use it effectively. By that I mean, everyone in your network has something different to offer, learn which people can best provide what you need for certain times. Some friends are brilliant at saying exactly what to say, others are better at making you laugh and distracting you. Don’t take this wrong, I’m not saying ‘use’ your friends, I’m just saying learn to recognise who you need at different times and go to those people!
Categories you might consider-
Practical help: Who is available to help you get shit done? Is there a person who wouldn’t mind doing some housework for you (if you don’t mind letting them). Is there a person who could hold the baby or take her out so you can sleep / eat / cook / shower / stare into space.
Comfort: Is there someone or somewhere that makes you feel relaxed? I love going to my parents house because I feel looked after. My step mum cooks the most delicious food for us and always sends us home with the left overs. And I feel like someone is looking after us, someone is parenting us… which is lovely when you are a new parent yourself!
Sharing an Emotional Breakdown: Who can say the right things at your darkest moments? When I don’t want anyone to sugarcoat or patronise me but to recognise that yes, this is hard, this is sad, and it’s ok to feel those things. Judgement free sharing of sadness, frustration and worry. It amazes me than there are people who are somehow magically able to say the right thing even when I am in my most difficult of moods. I come away feeling lighter and brighter.
Fist Pump of support: Who has your back? I am so lucky to have people around me who tell me with absolute certainty, that I am doing a great job. And this absolute certainty and is hugely reassuring. Sometimes you just need a boost! We all do!
Total distraction: It is really important to have some people to ground you and remind you that life goes on and you are still part of it. These are people who are ready to provide emotional support or fist pumps if you need them, but who also recognise that sometimes you need to feel safe to step out of your little world. We can talk about eyelash extensions, loft conversions, what new Netflix series’ we are watching, new recipe’s we’ve tried. Sometimes just having a totally ‘normal’ conversation can be just as important a cure.
- Look after yourself
This is really, really important. At my worst I was missing meals, forgetting to drink, wouldn’t leave the baby even to sleep. I was feeling the pressure of ensuring every moment of my focus was on my baby girl. This was not sustainable! Energy and health, both physical and mental, are vital to allow us to make our way through tough situations. I now make sure I have breakfast every day, I take a multivitamin, I carry a bottle of water around (and try to remember to drink it) and I allow myself to have some ‘time off’. In order to provide the best for my baby, it is also key that I look after my own wellbeing. So, have a long bath and read a book, bake a cake, go for a run, get a massage, go out for dinner with friends – you need this and you’ll be a better parent for having a break.
- Find a bright future to follow
One of the best things I did was type #CP and #CerebralPalsy into Instagram search. Of course, we don’t know exactly what issues Olive will face, but the doctors seemed quite sure it would be a form of cerebral palsy. Instagram has been famed for showing only the ‘best’ of life – people only upload the photos where life looks at its best. However, to be honest, that is what I needed to see. I can quite easily take my mind to a dark place and imagine the worst kind of future, what I needed was a picture of the best kind of future, something to strive for. And what I found were some absolutely amazing children and totally inspirational parents. Following @Willows_cpjourney is amazing and has been a real inspiration; Willow is the cutest little girl and Tara, her mum, shares the most brilliant therapy play ideas. I also follow @Lilacs_little_legs, another amazing mum who is fundraising for her daughter to have a life changing operation. It makes a huge difference to me to have a positive vision of how life might be.
- Seek professional help
People feel differently about this, I know. And it can be very hard to reach out. But, since I have benefitted in the past from both talking therapies and anti-depressants, I have not been hard on myself for feeling like I need them again. Another one of the best decisions I have made. I contacted a previous psychotherapist and see her on a fortnightly basis. I am fully aware that in order to accept and cope with what has happened I need to allow myself to feel some painful feelings. Having a safe space and dedicated time to do this means these feelings don’t need to fester and grow and become overwhelming. Its not an easy thing to do, I am often exhausted the next day, but I really value the fact that processing these feelings almost allows me to be in control of them. After breaking down in front of George and our health visitor, I contacted my GP in order to be prescribed some anti-depressants. I like to think I know myself quite well and can equip myself to dig myself out of any hole. However, that’s all well and good if you have the time to focus on yourself. You just don’t have this abundance of time with a new baby. And I had a new baby to look after! I needed to pull myself together – fast! Another decision I do not regret.
- Learn to appreciate little things
Being grateful is key to keeping going. Almost everyday I write down 3 things I am grateful for that day. They can be little things or big things. I am very lucky, I have an absolutely fantastic husband. I have a brilliant support network of family and friends. I have access to free healthcare for my family. I have access to specialised support for Olive. I have a warm house, a comfy sofa, Netflix. Sounds silly, but it makes a difference. It is, much easier to do this on good days, and I am certainly guilty of missing the bad days because I don’t feel in the mood, but I always write them in the next morning and it genuinely does help me to reflect on the good things in my life.
I am certainly no expert, but these things have really helped me. I am also not saying I can do all of them all the time. I definitely have days where I would just prefer to curl up in a ball and eat Ben & Jerry’s and that is ok too. But these things help my good days outweigh my bad. Is there anything you would add?
BLOG: www.lemonadelove.co.uk
INSTAGRAM: @Hiccupcakes
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