York Down Syndrome Support Group

Then started perhaps the most difficult part for me – breaking the news and also the hearts of our families, that the daughter we had longed for ‘had a problem’. Making those telephone calls was one of the worst things I have ever had to do, repeating it over and over to different people - each call tearing me apart little by little. Everyone was positive and supportive as expected, but that hardly made things any better.  Perhaps even more daunting for me, was the telling of friends, strangers and neighbours and seeing the looks of pity and sympathy in their eyes (whether real or imagined). I came to find some consolation in telling people, perhaps in the hope that repeating it over and over would lessen the impact and make it easier for me to accept. Bizarrely, I vividly remember accosting the window-cleaner in those early days to even tell him. Still now, I feel the need to tell people about her condition.

 

For us, the surgery wasn’t really the concern as realistically we had no other option but to go ahead and hope for the best. Fortunately, she came through each surgery well and we embarked upon a long road of aftercare too sickening to describe here. But again that was something for which we just had to grit our teeth and get on with.

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I think Jo and I both felt some catharsis in writing things down (both together and privately) and remember the two of us writing a diary of what had happened, and our thoughts and feelings in those early days. A lot of what I wrote I still keep private, either through embarrassment or as some sort of ‘Dorian Gray-esque picture’ which keeps the bad thoughts confined. We also talked a lot about our feelings and made a promise not to hide our feelings from each other and I feel this was a major factor in getting us through.  I remember Jo asking me once – “is she going to die?”. I was sure she wasn’t, but I think we both went through dark times where we might have considered that possibility a relief. I am still very honest about my feelings and as time has gone on, I have learned not to be afraid of those dark feelings, those times of despair, and almost to embrace them as part of the grieving process.

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We spent hours reading to her as she lay in her cot after that first operation, telling her how everything was going to be ok, and how much we loved her. For me though, at that time, I’m not sure it was really true. We both went through the grief process, but I still feel I am going though it almost three years later. We read the ubiquitous ‘Welcome to Holland’ which may have helped a little to put things in persepctive, but for me it missed the point. Even though I said I could cope with a trip to Amsterdam and that it could be a lovely place, I didn’t want to go to Holland at all. I recently found another blog called ‘Amsterdam International’ which summed up how I felt pretty accurately....and about the isolation and guilt which I think we both felt, and perhaps still feel, so strongly. Because the guilt has been the overwhelming factor for me.

Right from the beginning I had feelings of guilt about voicing my own feelings on screening to Jo, which perhaps made our decision not to go ahead with screening. I knew the risks of miscarriage from amniocentesis after seeing it firsthand during my career. This was a risk too great for me to take after wanting a child for so long, and so I didn’t feel there was any point in just going ahead with the routine blood test screening. We had spent some time trying to conceive and I didn’t want to terminate a pregnancy. I knew about Down syndrome and felt that we could cope with that situation. I even said that ‘I would be happy with a baby with Downs’. And that is where my guilt starts....my ‘tempting of fate’.

 

I felt guilt that other people seemed to be so much more accepting of her condition, and so blind to it, when each time I looked at her, the syndrome was the only thing I saw. I felt so unable to look past it, in the way my wife could, to see the precious daughter that needed me and all I could do was look away. I despised myself so much for this.

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I had wanted children for a long time, and that waiting time hadn’t been wasted. Subconsciously, I think I had created a masterplan of how things were going to turn out. Perhaps this is something that all parents go through but as a father, I had felt the need to have a child who would grow up to excel, someone to whom I could pass on my knowledge, someone I could nurture and help to grow up to be better than me. I longed for those times of looking forward to my child going to university, getting some wonderful job, falling in love, getting married and having children of their own. I knew that my plan was naive because there is never certainty for any child but that is where the guilt resurfaces, as I couldn’t accept that things were now going to be very different from my big plan. People kept saying “she will still achieve, just in different ways” but for me it just wasn’t the same. My wife frequently asked me “you do love her don’t you?”. I expected to quickly grow to love her but as each day passed without emotion I became more and more scared that this was never going to happen. They say that time heals all wounds and I guess there was some truth in this for me; it just took a lot longer than I expected.

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The time that everything started to change probably wasn’t for three months after she was born, until she smiled at me for the first time....the real smile. There is a famous movie line “you had me at hello”. Well I guess that was our ‘hello’ moment, and from that moment she had me.

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My wife doesn’t ask me any more if I love my daughter. I guess some things are just obvious. But I still cry from time to time and hate myself every single day for ever wanting her to be a little bit different and for putting my own limitations on her abilities, and about what she might be able to achieve in the future. The honest truth is that if she were different now, she wouldn’t be Darcey. She wouldn’t be my daughter, the daughter I have come to love and adore. Even now, her laugh is the one thing that makes everything alright again. She has been through so much, has suffered so much pain without complaint and is always smiling and waving at everyone she meets, and is so strong that she makes me ashamed that I ever had any doubts.

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My story isn’t about the three bowel operations that Darcey had in the first six months, or about the worry of needing heart surgery, or about the daily struggles with her development to help her sit, or stand, or walk. It isn’t about the joy of seeing her signing or how we spend time together just laughing. No.

 

My story is about a daddy falling in love with his daughter, and the feelings of inadequancy....not her inadequacy, but mine.

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