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| Frances and Ian on holiday in France in 1997 |
No sense of anticipation can ever match the feelings connected with a desired pregnacy. I knew it four times but two of those possible children were ectopic - affixing themselves within my wife's two fallopian tubes a few years apart. And then they were gone - almost as soon as they had announced their presence. They were unnamed and unseen and therefore their passing remains harder to mourn. They had little substance - it was really just the idea of human lives that had departed.
Fortunately, we had two normal children - whatever "normal" night mean. They were not disabled in any way. Their development was "normal" and they both had happy childhoods in a loving family, growing into happy citizens with minds of their own and a keen sense of right and wrong.
It was a privilege to watch them grow, to tick off the passing months and years, to witness them becoming fully fledged adult human beings. There were no problems to speak of - no problems with mental or physical health - no problems with schooling, the police, drugs or angry behaviour in the home. We were blessed and we still are.
But now I get to the main point of this post. I want to spare a thought for all those parents who find themselves raising children who have serious challenges to face. We hear about these kids all the time.
Children who are mentally impaired - who cannot speak and will never develop beyond the level of a two year old. Children who cannot walk. Children who have suffered amputations because of meningitis. Deaf, dumb and blind children. Children with cystic fibrosis. Children with severe epilepsy. Children who will never leave home to live independently.
I raise my hat to the parents of these children. Mothers and fathers who discover inner resources that they never imagined they possessed. Parents who fight for their children in spite of their disabilities and their prospects. Parents with patience and huge hearts who keep battling to beat the obstacles they meet even though the son or daughter they continue to support is unlike the child they had dreamt of.
There are so many special parents like that and to me they are absolute heroes. I am not confident that if I had been in their shoes I would have been able to do likewise. Perhaps one of those special parents is reading this blogpost. Kudos to you my friend. You deserve our respect and our admiration.
Well said We have no idea the challenge some parents face. I'm with you . They need to be recognized.
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DeleteI knew a woman who cared for her disabled son until they eventually moved into aged care together. It's such a commitment, isn't it? We normally only expect to do that high intensity type parenting for maybe 15 years.
ReplyDeleteI believe that we all have reserves we are unaware of until the need to use them presents itself. Or we grow and develop those reserves
I suspect that your final speculation is correct. We never know what we are truly made of until we are challenged.
DeleteYou are so right YP. I have the greatest admiration for such parents. There was a time when children such as that were sent to an institution and given no chance to thrive. Now we know how with much love and care children with many disabilities can do quite well.
ReplyDeleteBut some of them may never do "quite well" and so the parents never really see meaningful progression as parents of "normal" children do.
DeleteThere is a man who has an allotment close to ours. He's in his early fifties, he is widowed and has two adult children, one a boy around 25 with a mental age of 8 and a girl aged 21 with a mental age of 2. How that man copes, I have no idea. He brings them to the plot every day. The girl sits in the car with her baby toys, the boy helps with simple tasks. They both smile when they see us.
ReplyDeleteThere is no end to this until death. I have nothing but respect for people like this. They just go on, day after day. What choice is there?
He is the kind of parent I was thinking about. An incredible man.
DeleteFamilies like that have my utmost respect, too, as well as everyone working in the caring and health sector. I don't believe I would have the mental strength and patience to do any of it.
ReplyDeleteHow much reason to be grateful those of us have who were born without any severe disabilities or disease!
Having a healthy "normal" child is a blessing but one that is often taken for granted.
DeleteWe had three children and all of them agree that they had a very happy childhood and its lovely to know that we got it right. They all went on to get good jobs.
ReplyDeleteBut, my daughter had a child, Tom Grandson out of wedlock and due to her marrying when he was 12 he turned up on our door step age 14 with a rucksack saying that he could not live with her and her new husband any longer.
We took him in and dealing with him was totally different to our own children.
I think we dealt with every bad thing a teenager could do. He was into drugs, drink and trouble with the police all due to him being very, very unhappy.
It was an eye opener for us and quite traumatic at at the time, but had we not taken him in he could easily have ended up on the streets.
He left us at 18 when he went to Uni and as you know has made a good life for himself and is top of his profession now in the music business working for Universal.
This says to me that kids need a good stable and loving home to be happy themselves with both a Mum and a Dad to guide them.
I like to think I saved Tom and did the right thing taking him in, he always tells us how grateful he is and is almost like a son to us.
Briony
x
What you and your husband did for young Tom, it was surely the best achievement of your lives. You gave him love and stability in spite of his errant ways. And how wonderful it is that he has rewarded you by finding such success in his adult life. A marvellous and uplifting story.
DeleteI am glad that you took the two "failed" pregnancies in your stride. As one should a miscarriage (at least an early one). Alas the real concern in an ectopic pregnancy is most and foremost for the physical health of the mother. And your wife delivered two perfect specimens. Congratulations.
ReplyDeleteYour point a poignant one. My then husband, before he became father of son (FOS), made it very clear that he would not (in capitals NOT) be able to care for a disabled child. Even the idea of a harelip he didn't entertain. So I had all the screening tests available (I would have had them anyway) including the risky amniocentesis. As it is the Angel was born perfect, and perfects himself every day.
Whilst FOS might sound something, I don't know - precious? heartless?, at least he was honest. When he brought up the subject I had never even considered how I'd manage. I always assume(d) that I cope with anything life throws at me. But who knows. The dreadful, honest, truth that I look at people, parents with children who need care well and beyond, and I feel nothing but pity. Sometimes something close to revulsion. And thank my lucky stars that I escaped that destiny.
U
I am similarly grateful. However, I suspect that most parents of children with acute challenges discover inner reserves they never knew they had. Perhaps your then husband would have surprised himself if that situation had occurred. Fortunately, your son is angelic.
DeleteEveryone has said their say, all I can add is that love is the answer. Our destinations change because of the chances life throws at us, most people accept the hard work of looking after a much loved vulnerable child, they need our help.
ReplyDeleteOften what they need is a little "time out" once in a while but providing alternative carers costs money.
DeleteI don't know how families were able to cope with some of the situations my wife saw when she worked in this area. As Christina says above, it can get worse as families age. Imagine being eighty and caring for someone in their fifties with severe needs.
ReplyDeleteI have just imagined that and I do not like it. Not for me anyway. It's as if such parents simply surrender their own lives.
DeleteI think unconditional love is what these amazing parents have in abundance YP.
ReplyDeleteThat's a good way of putting it.
DeleteIf you ever want a crash course in parenting a child with disabilities, go over to my friend Elizabeth's amazing blog. http://elizabethaquino.blogspot.com/
ReplyDeleteYou'll learn far more than you could imagine.
Thank you for that link Ms Moon. I will certainly check out Elizabeth's blog.
DeleteI was going to suggest Elizabeth's blog, too.
DeleteGreet minds think alike.
DeleteYou would have been a wonderful father to a disabled child too I'm sure.
ReplyDeleteAs for parenting a disabled child, you do it because you don't have a choice. It was the hardest thing I've ever done and what I'm most proud of. Katie is a lovely young woman who enjoys her life, usually. I carry her in my heart always.
Of all the people who have responded to this post you know best where I was coming from Lily. Raising Katie must have been so challenging.
DeleteI cannot imagine it, never having been a parent to any child, healthy or otherwise. I often used to wonder what sort of a mother I would have been if I had had the good fortune to become one, but that never happened.
ReplyDeleteMy sister has four children, two of them with some degree of difficulties, and she loves all of them unconditionally. The two boys who are so-called "on the spectrum" have turned out really well and she is justly proud of them.
My lovely niece works for the Police as a child protection officer and has seen some horrendous things. Some of those poor children never stand a chance.
Do you mean that your two nephews are autistic?
DeleteOne has a mild form of Asperger's Syndrome. The other is undiagnosed but seems to have some mild difficulties with social interactions, although not significant enough to prevent him from doing well at his job.
DeleteI can't imagine raising ANY child, to be honest. It's all I can do to manage the dog!
ReplyDeleteMost kids don't chase squirrels or chew bones and you don't need to employ a childwalker. Just stick 'em in front of a screen and go and read a book. Easy peasy.
DeletePaul had a severely disabled older brother (he died about 10 years ago). His mother devoted all her time and energy looking after him and as a result Paul was often ignored and learnt to fend for himself. Siblings are also affected by a disabled member of the famiy.
ReplyDeleteThat is an aspect of bringing up a disabled child that most people, myself included, wouldn't immediately think about. Good job that the two of you parented two "normal" daughters.
DeleteWe've had a taste of what you're talking about but not the extreme version (our daughter developed mental health issues at age 12 and then a debilitating chronic illness at age 16, so there was a lot of care to get her back on a somewhat even keel) so I've had lots of opportunity to ponder how much worse it could be. I think many, many parents do it, as Lilycedar said, because they have no choice - but at the same time they love their children perhaps even more fiercely because of their protective feelings toward them. My hat is off to all those parents, and in particular those who must continue to parent into their old age because their children rely on them. I see moms of adult Down syndrome children shopping in stores sometimes, and I feel for them. You mentioned in one reply above about the need for respite - so true, and although there may be some available for some people these days, it is usually only enough time to get groceries or go to a personal medical appointment. That's better than it used to be, when parents did it all (and to be honest, usually the mother did it all), but it's still not nearly enough.
ReplyDeleteThank you for your typically thoughtful reflections Jenny. I hope that your daughter is no able to cope independently with life.
DeleteUnfortunately, she continues to rely heavily on others - which is now her husband for the most part. He knew it going into marriage, and has been a rock.
DeleteThis should have read "she continues to NEED TO rely heavily on others" which is kind of different from my original comment.
DeleteI raise my hat to all parents, because I knew from an early age that I could never do it. The only time when it might have worked was when I reached my forties, by then it was too late. No regrets though.
ReplyDeleteA lot of it is about being in the right place at the right time with the right person. State of mind and economic position are also important.
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