It is 1.04am as I climb into a cot-bed and seek some slumber beneath a Spider-Man duvet. The three year old to whom the bed belongs is sprawled out, with the gangling limbs of an awkward adolescent, across two thirds of the marital bed. The half of the marital who is not me, is scrunched up in the available third. I choose Spider-Man over the spare mattress in Hannah’s room because the two year old (who shares a room with the absent three year old) snores less loudly and is less likely to wake in a manic mood at 5am, than the 6 year old. But tonight, for a change, it has not been the infinite supply of exercise books to mark which have delayed my journey to bed. Tonight it has been the imminent 7th birthday of the snoring 6 year old which has kept me up beyond curfew. Or rather, the annual combination of anxiety, perfectionism, desperation and excitement, which surround the anniversary of my first-born’s birth.
There are the practical decisions for a start: what to give Hannah? What to give a child who gets stressed out by the opening of presents, puts everything she sees directly in her mouth, and has not been able to play with toys or turn the pages of a book for four years? Actually, I have discovered, there’s plenty you can give Hannah, but little of it is sold in any shop.
Three years ago, wearied, frustrated and saddened by shopping for gifts that barely ignited her interest, I realised that the thing which interests Hannah most, is people. She loves watching people, and most of all she loves watching the people she loves. So, a tradition of personalised, laminated, Hannah-friendly homemade photo albums was started. Every birthday and Christmas I go through all the photos from the year, print off those I know will engage her, mount and laminate them individually on card, and put them into a small ring binder which she can flick through, throw and nibble on without too much danger.
More recently, thinking she would soon be getting a new, bigger bedroom (the saga continues) a new tradition of canvases emerged, also based around her love of people. Every birthday and Christmas sees a new canvas edition of Hannah with the people she loves most. Every evening, when I take her into her bedroom, I ask her ‘where’s Grandad?’ and she looks, unfailingly, at his photo and smiles. Last year, the large canvas print of Hannah with all her classmates and teachers in the snow, prompted probably the smiliest, most intensely happy Hannah-reaction to any present ever. She didn’t even try to eat the wrapping paper. Two new photos will join her canvas gallery on Tuesday, I can only hope they will raise the same smiles.
Then, there are the books. Before regression started, Hannah loved to turn the pages of her favourite books and would sit surrounded by them for hours. After that, she could only rip. Now, she can only grip loosely before either throwing or dropping. But it’s clear that she still enjoys books and still has her favourites. So, wanting to keep those stories alive and accessible to her, another tradition started: every birthday I order two extra copies of her current favourite book, systematically destroy them both with a pair of scissors (as an English teacher, this always hurts) and then reassemble the pieces into a poster- sized collage which tells the story without a fine motor-skill required. They are framed and hang on her wall and, again, she shows absolute recognition of them every evening. The awareness and the smiles are worth the literary sacrilege.
And then, aside from the presents, there’s how to celebrate. Hannah does have friends who are her peers, but the truth is that her interaction with and interest in them is less than with many of the adults in her life, or than with the able-bodied children whose physical energy and movement she finds hilarious. Nothing is funnier, for example, than her brothers and cousins flinging themselves around on a trampoline. So her ‘parties’, for several years now, have been more like family and friends get-togethers, through which we endeavor to surround her with all the people who make her smile the most. But since putting all those people together at once can be a) logistically impossible and b) overwhelming for Hannah, her birthday persistently ends up spanning a two week period, during which we dedicate weekends and free time to ensuring Hannah spends time with everyone she loves. This year, we kicked off proceedings on the 15th and will be running through to the 25th. It’s wonderful, undoubtedly, but let’s just hope neither of the boys ever think to ask why their birthdays only last a day!
Come to that, let’s hope they also never question why their birthdays don’t ever include, as Hannah’s have, a week in Center Parcs (a Make-A-Wish gift), a haunted cottage in Cornwall (pre- diagnosis, pre-sons and pre-belief in the supernatural!) or a shiny new eye gaze computer (the result of months of fundraising). They won’t ask, I know, because already they love being part of the extended preparations, and somehow I think they understand the answer anyway: because they have gifts Hannah may never possess.
Everything I do for her birthdays, the late nights and homemade gifts and coordination of two weeks of celebrations, are my desperate, control-freak attempt to make up for the things she doesn’t have on her birthday, or any other day. Over-compensation, you might say. I know the homemade gifts are lovely and worth far more than the toy shops’ trappings, and maybe I would choose to make her personal presents anyway, but I would truly love to be able to just ask her what she’d like, or to take her shopping for a new dress or shoes or the scooter all her friends have that she just can’t live without. I’d love to be able to give her something I KNOW will interest and excite her. She does seem to love her photos and story frames, it’s true, but it’s still hit and miss whether the unwrapping process will raise a smile or a meltdown. The smiles are the holy grail, but the meltdown still hurts, no matter how much I prepare myself not to let it.
The sleepovers, the discos, the bowling trips, the ice- skating rinks, they’re all a little missed too. Inviting a hand-written list of my daughter’s 7 year old friends to a party she has chosen, would be a dream. I miss all those 7 year olds in my house, even though they’ve never been here. I’d like to meet them and to listen to them singing ‘happy birthday’ to my daughter, and to watch her blow out her candles, scrunch up her hopeful brown eyes and make a wish of her very own.
I love Hannah’s birthday, despite what some of the above may suggest. I love it precisely because of how overboard we go, of how much time we spend with wonderful people, of how, mostly, we are rewarded with Hannah’s smiles and giggles and the absolute certainty that she is a loved, loving, remarkable, enchanting little girl. But I’m not sure it is possible for it not to be double-edged: a reminder of the perfection of her arrival in our world, of all the hopes and dreams we had for her then, of how they all seemed so possible, of how they have changed beyond recognition. I never imagined that on the eve of my daughter’s 7th birthday, I would be hoping to one day hear her say ‘mummy’ again.
So yes, I do over compensate, I do everything I can to make sure that she never ever sees any sadness in my eyes or ever feels that her birthday is anything but a pure celebration. Because it is a celebration, ironically perhaps even more so because of the journey of the last 7 years and how they have taught me to celebrate every blessing we have, and there are fewer blessings greater than Hannah’s smile. So the celebrations will run for another 7 days and I will roll into bed far too late tomorrow night after blowing up too many balloons, hanging too many banners and eating too much icing whilst decorating one enormous number ‘7’ cake. I will go overboard, again, because I want Hannah to understand and feel and believe that I thank God and the stars and every other formidable force of nature in play, that she came into our world 6 years and 363 days ago, and that she has made it a better, brighter, more beautiful place to live every single day since.