You’ve got a baby or a child with a medical diagnosis and your life has been turned upside down. It’s not easy. It’s so far from easy and there’s very few comparisons if any. The one and only prayer most mothers make when pregnant is for their baby to be healthy and yours isn’t. That realisation alone, accepting that alone, is unimaginable. There are so many layers to this. There’s the day to day emotions, the day to day physical demands, the long lasting psychological and the lack of social.
The day to day emotional aspect is indescribable. The fear of the worst that always sits in the back of the mind. The sadness for the struggles your little one faces daily. The fact they can’t do what their peers can, what the majority of people you’ve grown up around can do and what you can do. The feeling of a lack of control as you administer medications, drugs that you know and have seen help but wish they didn’t need. The trauma as you watch your child vomit over and over again every single day and night. The feeling of complete helplessness as they look at you with wide bloodshot eyes, filled with panic as they struggle to catch their breathe. The overwhelming love that make every negative feeling so much more intense. The exhaustion of having to explain to healthcare professionals and everyone else what is best for your child or justify why you feel a certain way. The feeling of isolation as you feel no one can relate or understand and everyone else with a healthy baby is living a life of luxury.
You then have the physical aspect that so many will try to understand but will never really know the extent of. The sleepless nights of a newborn that go on for years of vomiting, medications and tube feed changes. The fact you’re the typical mum with the housework, chores, finances, feeding, clothing and all the normal expectations, plus medical demands. Researching conditions, searching for alternative and/or therapies for anything that will help your child. Medication prescription collections, expiry date checking, pharmacy calling and administering. Feeding plans that requires multiple feeding changes, hours pushing food or mediation into a tube that breaks through your child’s skin and muscle into their body. Something which also requires its own maintenance and management of skin care, balloon changes and community nurse appointments. The fact your home turns into a clinical environment requiring stock checks and monthly deliveries of medical equipment taking over our home. You have physiotherapists telling you that you need to do a one hour programme everyday when you barely manage to microwave a meal for yourself in the existing plan and you’re already feeling guilty your child is one year old and you haven’t made it to a play group. A plan which also has to fit around blood tests, physiotherapy, occupational therapy, speech and language therapy, individual consultant appointments for genetics, kidneys, heart and what feels like every organ, plus dieticians and paediatrics. If that wasn’t enough each of these appointments bring their own todo lists; to search for blended recipes, to buy something to help their oral aversion, to add to more fluids to their feeding plan, to practice index finger isolation, to get them to sleep in positioning equipment. Then theres the calls to chase up why certain professionals haven’t seen them recently, to push for a services they need and the energy that goes into feeling like you’re the bad guy for fighting for your childs to have what every other child is born into the world with. There’s the forms to fill in to request healthcare plans, the forms that need your signature for consent, the forms to request money from charities to cover equipment that isn’t covered by the NHS.
Finances are a difficult topic for everyone from individuals to couples to businesses and institutes. There’s never enough. Planned pregnancy or not, no one plans to have a child with disability and the costs that come with poor health. Most people won’t understand the additional costs because they don’t see them. The number of items you buy in vain to help a child who doesn’t eat with their oral aversion, items recommended by professionals that your child ends up refusing. All the items you spent money on before they were born that aren’t suitable for your child that can’t hold their weight in a pushchair or highchair. The private therapies that you pay for because your child deserves the input and you know it’s proven to help but isn’t available on the NHS. The experiences you pay for to make memories because you don’t have the luxury of expecting a life-time together. The expense of living in hospital that is Costa for breakfast, lunch and dinner or another cafe/restaurant that serve the same menu and costs the same extortion like you chose to be there. Can we please look into giving parents of children in hospital the basic human rights that criminals get for being stuck somewhere? The taxis back and forth because you don’t drive and don’t have the luxury of time to take the cheaper route. You take a photo of your baby in hospital every time you leave scared to death something might happen when you’re gone but you still need to wash your clothes, pick up new ones and check the mail as your bills still come in and the world keeps spinning.
With financial struggles comes the judgement faced if you apply for a charity, if your child receives DLA or you are forced to live on benefits to be your childs carer no matter what aspirations you had in life before this happened to you. The judgement is from people that don’t and will never understand or know the details but that doesn’t make it easier for you to feel like you have to keep justifying yourself or protect yourself from that negative energy.
Basic activities of daily living like washing and eating are a challenge when your mini humans ever growing list of needs come before your own. That gets you down, it all gets you down and that’s perfectly understandable. Yet feeling down because of the person you love the most in the world, can feel like betrayal. There you are feeling guilty again because as much as it feels like you’ve been stripped of all your hopes and dreams living an life you had not planned, you know that the alternative is living without them and the thought of that is something that fills your darkest moments when your mind becomes your worst enemy and showcases you all of the worst scenarios. So we return to gratitude that we have them.
Evaluate all you are doing. Give yourself credit. You’re doing the damn thing and the truth of the matter is that most of the time you run on adrenaline and you go above and beyond to make sure you have a happy home and live your best life but every now and then its going to come crashing down because it’s not all sunshine and roses. You’re a stay at home mum because of your childs poor health not luxury. You do all that you do because you have too not because you chose to. Your money is spent on things that don’t work or therapies that you wish your child didn’t need. The fact of the matter is, you’re not selfish. Who would wish for their child to suffer, to not be able to do what their peers can? You’ve gone from pregnancy scans with their legs outstretched claiming they’ll be a footballer or a ballerina and now you don’t know if they’ll walk or make it to their 16th birthday.
It’s okay to not be okay. Before writing this I thought about the fact its been a few weeks lacking motivation to do basic tasks, a loss of interest in the activities I enjoyed, headaches and tears. Depression? Then I thought, what will a GP suggest? Talking therapy that I don’t have time for? Medication? Not only do I not want to be medicated and feel that it is exhaustion rather than hormones, I also couldn’t risk the first 6 weeks of medication making me worse because I have a medical child to care for. Then I felt the urge to write this. I’ve not written a blog in months. I was called back to it and I feel so much better for going through it in black and white, maybe this was my talking therapy. I really hope reading this helps someone else. Whether it be helping an outsider looking in understand, or someone that can relate feeling understood.
You’re not alone. You can find me over on Instagram @thenursemum.
If you liked this blog post I also recommend What not to say to the parent of a child with special educational needs and disability PLUS how to rephrase and 5 ways parenting a special needs child changes your life