So much of my life is spent talking about my youngest daughter, discussing her life with medics or telling friends and family about her latest deterioration or achievement. My eldest daughter often gets overlooked, people don’t ask after her as often, yet she has her own struggles and difficulties as any child growing up does, and as much as I try to hide my depression and keep things together around her, there is no doubt that my demons have an impact on her life.

When my eldest was born, it took a long time for my bond with her to come. Her arrival wasn’t particularly easy, labour was induced following concerns about pre-eclampsia, and her birth was so quick that the surgeons were on standby to take me to theatre because of problems caused by the speed of her arrival. I’m not sure if any of that was why I didn’t feel that instant connection you’re supposed to feel, or if it was the crazy hormones that prevented me from looking at this beautiful baby and thinking how lucky I was. The GP diagnosed Post Natal Depression, although I’ve never been convinced it was PND. My depression had been awful prior to becoming pregnant, to blame the way I was feeling on PND seemed to be a quick and easy diagnosis.

Anyway, as happens, the bond did come with my daughter. I can’t remember when exactly, but one day it became a joy, not a chore, to feed her, a pleasure, not a necessity to pick her up when she was screaming. For the first two years of her life, when my demons were loud, it was easy to hide the need to just sit and do nothing, to have five minutes peace to myself. She loved Fireman Sam and we would snuggle on the sofa watching that and waiting for Daddy to come home from work – she’d have no idea how bad I felt. If I didn’t feel able to go outside as was often the case, we could have hours of fun inside the house with the many toys a kid that age has. I have vivid memories of feeling horrific and needing time to just “be”, so I’d make a cuppa, put a CD on and sit and watch my daughter having a great time dancing around the lounge, huge smile on her face and none the wiser that her Mum was desperately trying to remain strong.

Those days, although they seemed so hard at times, were simple compared with later years. When my youngest came along, we were not sure if she would even make it out of the Special Care Baby Unit where she was taken immediately after her birth. My eldest was two and a half when her sister arrived and my Husband and I had to make a massive decision quickly. We decided from day one that we would be completely honest and open with our eldest, that we would tell her as best as possible that things were not going to be as we had all excitedly planned, but instead the future was uncertain. That whole period is a blur to me now, looking back I can only remember snippets of conversations with Doctors we were yet to learn to trust, agonisingly painful bus rides to the Specialist Hospital just a short time after the emergency c-section (I think we hit every pothole possible), my eldest being looked after by Granny and coming in to hospital armed with colourful scribbles that she had made for her “bubby” sister. Our choice to tell our eldest the situation meant that at not even 3 years old, we spoke to her about the fact her sister might never get home to the soft toys she had helped pick out to fill her cot.

Having made that decision, over the years there have been many other difficult conversations we’ve included our eldest in with regards to her sister. For us it’s important that – within reason – she is aware of decisions we make about her sister’s care, and knows test results that show the gradual deterioration of our little lady’s quality of life. We’ve been criticised by both medical professionals and other parents for being so open with our eldest, but both my Husband and I know that for us, we have made the right call. Our eldest (now 10), has grown into an extremely kind, caring and compassionate girl. She is ever so protective of her sister, and their bond is absolutely closer and stronger because she is aware that one day her sister will no longer be with us. Equally important is that she sees everyone as the same, she doesn’t stare as so many people do if she sees someone with a physical disability, she understands more than she ever should at her age, but she is bright, happy and aware of the challenges of life without being dragged down by the sadness of the situation.

So having grown up way quicker than I would have chosen for my big girl to, the next couple of years passed by in a haze of adjusting to life with her sister. Hospital appointments, ambulance trips, tests, scans, overnight stays on the children’s ward….. My eldest missed out on a lot while we had to focus on what was wrong with our youngest, learn how to care for her and try to come to terms with a life much different from that we had imagined. Thankfully, during that time, my depression wasn’t too bad, allowing me to deal with what I needed to, mostly I think because I was so busy. I barely had time to think about anything other than hospitals and researching the latest diagnosed condition on the internet. It wasn’t an effort to get out of bed, or dress or have meetings, it just happened.

The last two or three years, things have calmed down with my youngest and life has become relatively normal for us – as I’ve said before, not because she’s got any better, but because we have become more capable of dealing with her problems at home. Surrounded by equipment and medications our house could double as a hospital, but being at home, as well as keeping my little one more comfortable, has meant finally a little bit of stability for my eldest. When I stop and think about this time though, because it has been calmer, I am able to recognise times my depression has stopped me from enjoying time with my eldest and prevented me from going out and spending what she calls “girly” time with her.

It breaks my heart that I have missed out on opportunities to make memories with her because of my demons. It is very hard to accept because it’s only after the event that I can see that these chances have passed me by. In the moment when the demons are in control, I can’t see the impact that has on my daughter, it takes everything I have just to remember to breathe. There was a time when I was taking anti-depressants and they caused me to have migraines, it used to be a relief when I could feel one coming on because it meant I could take myself back to bed and leave my Husband to look after the girls. I didn’t need to pretend or force a smile under the safety of my duvet. My Husband has said before I don’t need to pretend in front of my daughter, but of course I do. She needs to see a Mum who is in control, able to do the school run, look after the house, cook meals and help with homework, all with a smile on her face. The pressure is huge, my daughter puts no expectation on me, she is still young enough to accept things as they are, the pressure is solely what I put on myself and it weighs heavily.

On very rare occasions when I have been unable to hide the way I feel, when the demons get so loud, the tears fall freely and don’t stop. The guilt I feel about that is immense, my daughter shouldn’t see me upset, it worries her and I hate that I can’t explain it to her. As much as I have discussed all sorts with her about her sister, talking about my depression just isn’t a conversation I can have with her. One day I will have to though.

My depression started when I was a teenager,  it was dismissed by school teachers as rudeness and laziness, I hid it from my parents as I didn’t understand why I felt the way I did, and when I finally found the courage to go and see a GP, I was told to take anti depressants and they would fix everything.

There is absolutely no way that I will not warn my daughter of the possibility of feeling the way I did at that age. I hope she will never have to battle with her own mind as I do, but if she does I want her to know that she can always talk to me and she must never feel like I was by my teachers – that I was being rude by not joining in class discussions or not wanting to participate in group activities, and therefore “attention seeking”.

My biggest concern right now though, is making sure that when she looks back on her younger years, that she doesn’t remember a Mum who didn’t join in with family activities, a Mum who sometimes couldn’t even find the strength to put a meal together, a Mum who always said “not today” when she asked to go out. Even if her happiest days, her most memorable childhood moments, are the days that I feel my weakest, the days I struggle to get through, I am determined she will have times that she can say were good.

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