Children as a Gift. By Keith White

Usually when I write a column for The TCJ based on a specific incident, conversation or occasion, I seek to get to work on it immediately to ensure that no details are forgotten.  But in this case I have waited almost a week to ponder what happened and make sense of the turning points in the dynamics.  The title of the piece is the result of that period of reflection.

The occasion was the visit to Mill Grove of two families both of whom were grieving the death of a child.  We were in the sunniest room in our house which for nearly thirty years has been the place where children with cerebral palsy and associated conditions have come for regular sessions.  This part of the life of Mill Grove is known as the Rose Walton Centre, and is run by a dedicated team using the Peto method of Conductive Education.

One of the features of cerebral palsy is that it commonly curtails life expectancy, and so over the years we have been alongside families mourning the loss of children and teenagers.  In the case of these two families, the boys who died were both young, and astonishingly, both had died from an identical and very rare genetic condition.  The first, who I will call John, died over a year ago; the second, Ethan, died just a few weeks ago.  Although the parents had been in touch with each other over this period, not least when they realised the highly unusual medical condition that connected the two boys, this was their first visit to the place where they had come so often with their children.

It was a big step because there were so many happy memories associated with the Rose Walton Centre and its team.  They knew that the visit would irritate raw emotional wounds, triggered by any number of associations and relationships.  So although they were at different stages of their grief, the challenge of coming back something they had in common last Saturday afternoon.

Ethan’s mother came with her youngest child, and he enjoyed the opportunities to play and eat as much as he liked over a period of four hours: yes, it turned out to be a shared experience that lasted that long.  John’s mother and father arrived an hour later, and they brought John’s older brother.  He came armed with a football and spent much of his time practising on the five-a side pitch outside.

There was intentionally no agenda or plan.  Some chairs were set out in a circle around a table laid out with a finger buffet. It was a time to be together, that allowed feelings to emerge and be shared as and when appropriate.  There was no shortage of clips of both boys taken during sessions at the Centre, and these were shared.  Touchingly, several showed them lying side by side, smiling and with arms linked.  As conversation ebbed and flowed along with tears and smiles, one of the emerging reflections was a shared acknowledgement that it was highly possible, in fact, likely, that in their togetherness John and Ethan shared much more with each other than anyone else will ever know.

The assumption that words are required to understand and respond to deep feelings had been dispelled early by years of living with and being alongside children with cerebral palsy.  All the adults described how they had needed to unlearn many such assumptions, and to adjust their focus and attention to take in the many rich messages that were being passed on by other means.  It probably doesn’t need to be said that likewise all had discovered that the inability to speak was no reflection of a child’s awareness, ability, empathy, imagination, or intelligence.

Ethan’s mother was often in tears and regularly used the tissues to hand.  She asked how others had come to terms with their loss and grief.  Several times she described in detail the stages in the death and burial of her little son.  One of her realisations was that she and her husband had been processing their feelings in quite different ways. As she did so one of her refrains was that the Centre was “family”.  She realised this was why she knew she had to come back, although it was so hard.  Having had to say a final farewell following the death of her child, she recalled the regular farewells at Mill Grove.  She commented that she would never have left her boy had she been in anyway concerned that he would be anxious or unhappy.  She came to have complete confidence in the team and gave them a thank you gift: a little plaque reminding them of the difference that they had made in Ethan’s life.

At this point there was a moving conversation between the two mothers.  Each described how the nature of their child’s condition meant that holding and letting go their sons was imbued with completely different significance to that of holding their other children.  From the time their sons were in their wombs, and they had held them at their breasts, to their dying days, they had held them more carefully, often and closely, than anyone else.  And because of their condition, this holding was one of the primary ways in which feelings were expressed and communicated.  This meant that the final letting go, the literal releasing their hold of their children for the last time, was unbearably poignant.  It helped to explain why coming back to a place where they had released them into the care of others whom they trusted was so full of emotion.

There was much, much more that was shared, by words, tears, smiles, touch, and hugs.  But on reflection, the factor that seemed to me to have made all the difference to the parents was the realisation that their child was a gift.  Both sets of parents had at least one other child, and John’s mother was pregnant and expecting another baby in a matter of weeks.  What they had come to see through being the parents of children with cerebral palsy, knowing that their life expectancy was short, was something usually hidden from parents.  They confessed that they would never have seen it themselves except for the remarkable effects of welcoming and receiving such children into their homes, hearts and lives, and adapting everything to show them their care and love.

The father of John put it like this.  Until John was born, he saw himself primarily as the provider in the family.  He ensured that there was a good home, that his wife and family were secure.  The arrival of John changed things fundamentally.  In time, he developed a closer relationship with John as a father than he could ever have envisaged.  This in turn changed him as a person, his fundamental perspectives on, and values in life.  He went on to say that his relationship with his wife had been enriched.  She had given up her career to care for John.  He was clear and unapologetic that John had been the catalyst for something resembling a revolution or conversion in his whole way of living.

What was at the heart of this?  It was the dawning awareness that a child was not something to be expected by parents as of right, not a sign of future security and prosperity, not the source of pride on account of progress and achievements.  Rather a child was a gift.  And an infinitely precious gift, entrusted to parents who were to be stewards of that gift, for as long as the child was given to them.

All three parents were in complete, joyful agreement about this.  They had come to realise that they had been blessed immeasurably through the gift of John and Ethan respectively.  Preconceptions and assumptions had been stripped away.  There were precious achievements in their children, often hidden to others, but they did not remotely measure things by development and achievement, so much as by the joy of seeing and knowing that their children were content and enjoying life.  And that their presence, not least expressed through their touch and smiles, were priceless treasures. They spoke as if they had discovered what seemed like the pearl of great price.

One of the effects for me and for the team was their help and encouragement in seeing this.  Whether as parents or carers it is all too easy to lose sight of the truth that each child is a gift.  That we have no right to assume the length of a life, or the steps or levels of achievement that will be made.  In the present, in the fleeting moment, life is to be lived to the full.  And where that is so, though sadness and regrets linger, because there is never “closure” of loss and grief, the blessings are such that the future is enhanced.  It will not be a case of nostalgia and constant looking back in grief, but of expressing the joy of the discovery that their child was a gift, that brought light and life to the future.  And this discovery is transferable: all human life is a gift, so all future relationships are potentially enriched.

The presence of one of the team endorsed this.  She was the grandmother of Anthony, the first child at the Centre, and having cared for him until his death aged 17, she has since devoted much of her life to sharing her discoveries and joys with others.  She confirmed that she felt a lingering sadness, but that she had received so much, that she wanted to give more.  She is in her mid-80s, and so speaks with a quiet authority, including the experience of helping 100 or so children and families.

As for me, I have witnessed so much as a parent who has not had a child with such a condition, that I have constantly been blessed to learn from those who have.  The quality of their lives, and relationships is distinctive.  And now I think I have the words for its source: each child is a gift.


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