Thirteen years ago I gave birth to my first child, as he enters adolescence (and I wonder how that could be possible) I realise a lot has changed and there is much that I have had to work out for myself. So I decided to write my 2004 pregnant self a letter sharing what I have learnt so far.
Forget birthing plans, a water birth, scented candles and nice relaxing music playing in the background, the only thing that you need to focus on when you go into labour is your breath. It will be an ally silently holding your hand when things get tough. This may be your first baby but let your body speak to you and listen carefully as it whispers. Trust and stand up for yourself, don’t be so nice. The nurses won’t actually believe that your labour is established because you cope so well and you labour so quickly. There will be panic, baby will be distressed but stay clam, focus on what you need to do you will soon hold him in your arms. And it hurts, especially with zero pain relief but one day you will understand the joy in childbirth, I promise.
Nothing will prepare you for the overwhelming love that you feel for your baby or the paralysing tiredness that you will never seem to shake. Make the most of the first few months because after that point your body will start to fall apart. Chronic pain and fatigue will hit you like a truck and you will be weak. Accept help and don’t be so proud. Letting someone else cook dinner once a week does not make you a bad wife or mum, just tell someone that it is hard.
The niggly pain that you have in your foot will leave you almost incapable of walking soon and will take 9 months and a surgery to resolve. After the operation you will wake up with a smile so broad from the relief of that pain that you actually cry. The tests into the problem will leave you with a diagnosis of the neuromuscular disease, Charcot Marie Tooth, take time to come to terms with this, process it, grieve, don’t rush it, you need this process in order to move on. At this point it will seem like your life starts to unravel, to be honest it does. It steals your career and you will dislocate merely as the bed covers lightly brush across your knee, you will get to the point where walking on grass is impossible without falling and having more dislocations, life gets harder. You will feel as if you are being stripped of your mobility, your dreams, your friends, your goals and your identity.
It gets better. You will realise that teaching is a job, that you are replaceable and that’s OK. Where you matter most is at home with your family. You will learn that strength is not merely a physical pursuit it comes from within. You will develop perseverance and patience, when things are tough they will improve. You will learn to think out of the box and find solutions when problems present themselves, the rewards can be so much more when you work harder for something. You will learn to value what is dear to you and treasure it with all of your heart. And you will learn intrinsically not to judge others because you never know their story. You will become a better person.
You will also discover that what you have been doing for years is pacing your life without even realising it. Those naps every day after work before Dave gets home, 10 minutes on the sofa flicking through a magazine, takeaways a couple of times a week. You just can’t do that now that you have another individual relying on you with every inch of their being. Fatigue will hit you, time and time again. There will be points in your life when you will not get out of bed and wash for days or weeks at a time. Where you will physically collapse unable to actually put one foot in front of the other. Where you wonder if it will ever improve and how? It will get better, slowly. You are a warrior now. Pacing will become your friend again but it will take nearly a decade to understand its impact on your body and make it work in your new life.
After two and a half years when your family increases, be warned, this labour will be even quicker. You do make it to the hospital, but only just, you lose a lot of blood, consciousness and go into shock. It will take another six or seven years to learn that you have Ehlers-Danlos syndrome and POTS and that they are the cause of this. The same pattern will continue after baby number two, pain and fatigue will be relentless you will visit more doctors and hospitals in the search for answers than you ever thought possible. Where you once navigated London by the night clubs and shopping hubs you will now have a mental map of the leading doctors and teaching hospitals. Some of these doctors won’t believe you, some will but will be at a loss to know where to start or how to help. When you stumble upon professor Rodney Grahame the pieces will finally start to fall into pace. Although a relief, an EDS diagnosis is only the start of the journey, you will spend the rest of your life learning how to live in harmony with these conditions, managing them, trying to be the boss. Researching and managing their impact will become a full time job. Apart from your husband no one will really see the effort involved in keeping up your normal appearance to the outside world. This new life, while different can be fantastic, just take a breath and learn to appreciate the joy in every day.
You discover the beauty of childbirth when your daughter comes into the world. A peaceful home birth surrounded by those that you love and a midwife that you trust. Breathe it in, enjoy it. She is your little miracle and will teach you even more about strength and perseverance than you ever believed possible. As your children grow you will start to realise that they have their own mix of things going on for them and pain and fatigue will sadly become a daily part of their lives too. This is the hardest part of your life and I can’t ever promise that watching them in pain and to struggle will get any easier. You are a zebra mum and you will fight for their care with every last once of your being because you love them so fiercely. You won’t believe this now but because of them and because of your passion you will have an inherent need to give back, you will be lecturing at Brunel University and helping families with your experiences from all over the world.
Once your children are at school you will face some of the most challenging times of your life; trusting others with the most important people in your world and to manage their health when they are often not willing or prepared to step up. This will be the most stressful thing that you ever do. There will be ignorance and ego’s of which you have no control. But there will also be angels disguised as teachers along this path that shine light in the darkness. Your children will amaze you every day with their achievements and will prove that they are much, much more than their illnesses and how they feel.
Learn to eat well, for you this means gluten free. Stay hydrated and exercise often even if every ounce of your body is screaming no. Teaching this to your children will be the greatest gift that you can give to them. There will be non-believers, naysayers; people with far too much opinion about what they think is or isn’t wrong with you. There will be people that will talk about you behind your back and even to your face. Don’t let these people steal your joy. Don’t waste your time trying to convince them what is fact, you are not responsible for their thought processes. Use your energy on the important things, wellbeing, happiness and enjoying time with your friends and family. Live.
While at points along this journey you will feel like your life is unravelling it will actually be falling into place. As friendships fade they will be replaced by new ones, stronger ones, with people you adore and who adore you for exactly who you are. Your illness will not be an issue at all to them, you are just you and you happen to have an illness. And your David, he is just as amazing now as he was then. In fact even more so.
Ps. On the 16/8/16 Do yourself a favour and take a picnic. It will save you a swim in the Thames.
Pps. Remember that you can still be assertive and nice, too much nice and people take advantage.
Ppps. Whatever happens keep smiling.
Thank you for sharing this, Sarah. Reading this resonated deeply with me (although not the CMT part, thankfully). Thank you, because it makes me realise that, although I feel as though I’m battling on my own, there are others out there across the country battling alongside me. My ‘pig-awkwardness’ is finally reaping some reward in better support for my children, but it’s taken a long time to get to this stage. Onwards & upwards. (Still working on the assertive part!) x
Yes, that stubborn determination pays off in the end! When things are tough I think that it’s good if we can find a little strength from others. Thank you so much for taking the time to comment – Onwards and upwards!! S x