This week we had to say goodbye to an old friend; a constant in our lives. The farewell was hugely anticipated and yet seemed to take us by surprise when it finally arrived. This week has witnessed the end of my daughter's nocturnal partnership with her "boots and bars".
For those who don't know, my daughter's rather difficult pregnancy resulted in her having been born with a "unilateral talipes" (to give it its medical title) or a "club foot" (to give it its rather archaic, colloquial term). It meant that, having been deprived of the the luxury of growing room in the womb, when she emerged all pink and shrivelled like a baby mole the sole of her foot was turned up towards her face like a flower seeking out the warmth of the sun. A pretty analogy but not much use to walk on.
We were forearmed on this one as when our 20 week "anomaly scan" had discovered just that the local health service had a plan and within a week of diagnosis they had packaged us off to meet the specialist physiotherapist at the children's hospital. Still grieving the loss of our "normal" child, we were ushered into the treatment room to discuss the next steps (so to speak) only to be abruptly woken from our self pity by the multitude of cupboards entitled "airway equipment", "cystic fibrosis essentials" and "mobility aids". This was by no means a worst case scenario; this issue was both rectifiable and non life threatening. Whilst we were warned that our child was unlikely to compete at an Olympic level or a perform as a professional ballerina she would walk, she would skip, she would run but more than that; she would live.
So after she came along we trotted off to meet with our foot guru and have our new arrival assessed in person. The foot was no better nor worse than the physio had expected based on the scan and, as discussed antenatally, she would require a series of full length leg casts to slowly manipulate the foot from its turned in position towards a more natural sole- to- the- floor appearance. Now, keeping a full length cast on a wriggly baby is no mean feat (pardon the pun) and there were multiple occasions over the next 12 weeks when we would have to run to the hospital brandishing a cast in one hand and a startled baby under the other; desperately proclaiming that all the efforts would be undone were it not put back on in an instant. When we did eventually make it through the first 3 months and it was finally time for the big reveal we were delighted with the results. She had a matching pair!
However, we were then informed that she would need an operation to remedy her excruciatingly tight achilles tendon before the next stage of treatment could commence. So at the tender age of 12 weeks we presented her for her pre-op assessment having kept her nil by mouth for what felt like an inhumane amount of time for one so small. They too seemed to recognise this and she was put first on the operating list. We were relieved and terrified in equal measure. When invited to accompany her down to the anaesthetic room I could not face it and selflessly let the husband fulfil the role. He eventually reappeared looking haunted. He recanted the tale of how she had been all fighting spirit and then was gone; a limp doll only vaguely recognisable as our precious little girl.
Needless to say, several hours later we were informed that the operation had been a success and her last full length cast had been applied. Two weeks later, our relief at finishing the series of casts was short lived, as she was then strapped into her first set of "boots and bars". This apparatus was initially to be worn 23 hours of the day for a 12 week period before being reduced to 12 hours of the day until she was 5 years of age.
She did not care for this.
Following her first fitting we decided to go for a family day out taking in the fresh sea air and a pub lunch. Being like any other 4 month old she opted to perform her necessary ablutions in her car seat resulting in every nook and crevice being infiltrated and a full strip and hose down essential and yet nigh on impossible in our current surroundings. My husband gamely took her into the nearest accessible toilets and attempted to liberate her from her new apparatus and rectify the situation. From my seat in the bar I issued apologetic looks to the other customers who were hostage to the ensuing cacophony erupting from the nearby facilities as my daughter let her feelings be known. Husband staggered out, battle weary and downed his (now tepid) coffee. It was home time.
Broken. Just broken. |
Having said that I honestly cannot recall another time when the boots and bars were truly an issue. Our little girl has always been open to reason and whilst she has questioned whether she had to don them yet again, she has always been amenable and understood the long term goal. Our long standing night time routine of bath, teeth, toilet, boots and bars, book and bed has become second nature and even the youngest has taken on the role of clicking the bar into place for his big sister before storytime. For us, it was normal but as the date of completion emerged on the horizon I saw, perhaps for the first time, how desperate she was to rid herself of her nocturnal companions.
Realistically there was no obvious reason why further time or manipulation would be recommended. She had passed every quarterly check with flying colours. She could run, hop and skip with the best of them. So, against my nature, I was cautiously optimistic where she was terrified. As ever, terrified of failure and of letting others down. She needn't have been. She received a big fat stamp of approval and was released on parole.
A happier child you never did see.
So now we are acclimatising to our new normal. It is taking some time and there are still occasions when we have taken our positions on the couch before realising that there is no apparatus required. In some ways I miss the feeling of having a defined, tangible role in helping her with the physical burdens she has to bear but these feelings are quickly dispelled by the sound of the pitter patter of her (unusually) tiny feet in the morning as she gets herself out of bed for the first time in 5 years.
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