An interview I gave in 2005 is now on YouTube. A LOT of water has passed under the bridge since then, but the answers are the same.
Thursday, 23 October 2014
An interview I gave in 2005 is now on YouTube. A LOT of water has passed under the bridge since then, but the answers are the same.
Friday, 17 October 2014
It is has been quite a while since I posted an update on Albert's progress. As one friend said, "No news is good news!" While this is generally true, unfortunately there has been plenty of action between home, health professionals and hospitals.
The good news is that there have been no life threatening issues lately. Albert is advancing in motor skills, responses, producing a variety of new sounds and actions over the last month or so, delighting his specialists and therapists with his progress. He is very active when awake, managing to move himself into the most unlikely corners of a room if left on his mat even for a few minutes.
Unfortunately Albert is not making progress in oral feeding. If liquids go into his mouth, they end up in his lungs. He is able to swallows a few mouthfuls of puréed food, but not enough to be called a feed. The specialists finally conceded that it is unlikely that Albert will be feeding orally in the near future, so they initiated a process that moves us towards having a tube placed directly into his stomach through his side. The prospect of a new round of surgery, recovery and learning a new feeding procedure seemed daunting at first, but the advantages of Albert being free of his nasal gastric tube are too good to overlook. Nasal gastric tubes are designed to be used for a few weeks, perhaps a month, while someone is in hospital under careful observation. Having Albert home is great but, as he becomes more and more active, the likelihood of his tube catching on things, tangling around his neck etc is increasing daily. Susie and I have found ourselves in emergency departments (on separate occasions) after his tube has been pulled out. (The pic above is taken in an emergency department just after his tube was pulled out.)
Albert is now waiting for surgery. The line up for surgery involves our paediatrician referring us to a hospital paediatrician, who barely glanced at Albert before she wrote a referral to the outpatients department of the hospital. Outpatients then refer the file to a surgeon's office, and his office calls us in to 'consult' the surgeon and give our consent. In this context, 'consult' seems to mean that he tells us what he intends to do surgically, and recites a long list of things that could go wrong, before asking us to give consent to the operation. We have an appointment to meet the surgeon early next month.
The procedure from there is that the surgeon places Albert in the queue for surgery, which is governed more by priority/urgency than waiting for our turn. We have been told that the wait could be 1-6 months depending on other cases.
Back to the waiting game.
The reason I have not posted is more about mental exhaustion than any lack of news. Susie and I have been plodding along, taking each day as it comes, but the emotional drain has left us flat. Having Albert home is great. It is not great that we do not have the mental or physical energy to rejoice when he smiles, laugh as he gurgles, clap as he rolls over and cry as he coughs his way through a cold again.
Albert is well, he is improving in many ways, but it is still a long exhausting haul.
Saturday, 4 October 2014
Normally I avoid discussions about making a parish more 'welcoming.' This due to the fact that the discussion inevitably follows the same pattern. Someone trots out a list of half-baked token gestures which, in the past, have proved ineffective at best and counter productive at worst. The parish select a few of these they feel capable of, and don't cost much in terms of time or money. Several of the more well meaning parishioners proceed to carry out these plans for a short time. This continues until they finally become tired and discouraged at the lack of any response or help from the parish, after which they give up and return to the usual Sunday shuffle in and out of Mass.
Do I sound cynical? I suspect so. I am not claiming to be an expert in this field, but neither am I shooting my mouth off after five minutes of thought on this matter. Evangelisation has been a passion of mine for my entire adult life. I have seen more theories, programs, methods, plans, and enthusiasts than the average person. I studied various aspects of evangelisation and catechises as a Lutheran seminarian, as a new Catholic and more recently as a less-new Catholic academic. In fact, I now teach a short module titled "Sharing your faith, without losing your friends" at my University, which is an abridged version of a longer course I taught for years at the Catholic Adult Education Centre in Sydney.
Let me say again, I am no expert. I am just a Catholic who is passionate about sharing this good thing we have in an effective way. So, when the ever practical Simcha Fisher posts "How welcoming is your parish?" and opens her discussion box for practical input from readers on how a parish can be more welcoming, I am drawn to the discussion as a bee to pollen.
Not that any of these ideas are bad ideas. I particularly liked the idea of doughnuts! The problem is that these things are symptoms of something, a mindset, a state of heart, that we cannot create by merely imitating symptoms. What 'works' in evangelisation is love. Authentic, Christ-like love.
People can see through attempts to fake interest. They can see through the five minute effort to be welcoming. They can see through all the talk about God's love if they are faced with the stony indifference of participants in a suburban Mass. They can also see through the false projection of forever smiling, happy Christians. They can see through the overproduced hype of the so called mega-churches.
A list of features of a parish that may attract seekers may include
I am assuming, of course, that every parish should have regular Mass, and confession, both advertised clearly on the parish sign and on the web page), faithful liturgies, with some effort to produce a decent reflection on the Scriptures provided in the lectionary that week. I am assuming that ushers and volunteers are consistently taught and encouraged to listen carefully to parishioners and encourage them to participate in the parish.
Warm silence. Somewhere between the overwhelming volume of the pre and post Mass chatter in some parishes and the stony, barely repressed anger at any noise louder than wax dripping from the golden candelabra, is a happy medium which demonstrates genuine reverence and Christ centred meditation which is also calmly joyful in the face of a child's innocent, if loud, banter.
Genuine, practical help. By this is meant a simple meeting the practical needs within the parish without fanfare or fuss, and without making people feel as if they are a charity case.
Genuine concern and involvement in each others' lives. I admit I am one person who is grateful that my car has released me from my local parish and allowed me to seek a half decent Mass a short drive away. The negative side of this freedom, combined with our work and social life being spread far and wide, is that we are no longer bound to our fellow parishioners by locality, common activity or common concerns. While there are genuine communities that spring up around shared mission or activities, these communities tend to be as transient as our involvement in the activity. The younger generations do not seem to have an ongoing commitment to local ministries, regular local prayer groups or Bible studies, and their faith suffers for it.
Part of the problem is that the ease of travel and social media has conditioned us to avoid difficult or annoying situations by simply seeking a better experience. Where being stuck in a local parish, with all its annoying people, would once shape and mature Christians, we now barely tolerate any experience we find challenging or requiring effort.
This is only possible where a core group of parishioners put aside their own small niggles and commit to genuine service and love of each other. As Christ clearly said "By this all men will know that you are my disciples, if you have love for one another" (John 13:35). Note the "one another part. It is easy to pick and choose who we want to love outside of our community. It is much harder, yet more definitively Christian, if we love these annoying, frustrating, boring, ordinary folk who share our weekly Mass. If we get that part right, the rest is details. If we neglect it, the rest is just empty noise. (c.f. 1 Cor 13)
Saturday, 20 September 2014
After a sleepless night in a ward of six beds, some of which held children with infections far more serious than Albert has, Susan was cleared to be discharged and come home with strong antibiotics and fresh quarantine instructions. All packed and ready to go, Susan and Albert were chased down in the last hallway before they left the hospital by a medic with new information.
While the doctors are satisfied that Albert can recover from his chest infection at home, the doctors noticed some more shadows on his chest x-ray.
Albert has been x-rayed so often that the doctors have an excellent series images taken over the last six months for comparisons in case of doubt. The concern is that the shadows they noticed are new, and too large to be dismissed as a flaw in the x-ray. They seem to be located on or near lymph nodes, which raises the possibility of lymphoma. We mentioned yesterday that Albert has been monitored for the last six months against the possibility of leukaemia since he has a blood condition that predisposes him to the condition. While lymphoma is another blood related cancer I am yet to hear a doctor confirm that Albert's blood condition predisposes him to it.
Based only on my rudimentary general knowledge of the diseases, leukaemia is related to the bone marrow, and spreads primarily via the blood circulation, whereas lymphoma is related to and spread via the lymphatic system. Since we do not yet understand why Albert's blood condition predisposes him to leukaemia, we can't guess if the condition also predisposes him to lymphoma. Either way, the scan is a concern.
As I write this Albert's scan has been pushed back due to another child requiring emergency surgery this morning (please pray for that child). His fasting in preparation for the general anaesthetic continues in the hope that he will be scanned later today.
UPDATE: Albert came out of recovery late this afternoon. He seems happy enough and had his first feed since 2AM this morning. The doctors have all gone home when their shift ended so we must now wait until at least tomorrow to hear about the results of the tests. Consultation with the oncology unit of the hospital resulted in him being scanned from neck to loins, checking lymph nodes.'
UPDATE 2: The doctors just called and told us that Oncology (the resident cancer specialists) have looked at Albert's scans and are not at all interested in further scans. They believe that the shadows on Albert's lungs are not consistent with any sign of cancer, and there are no other signs of cancer in the rest of his torso. Susie and Albert are now home and we are raising a quiet glass of something strong before an early night tonight. Thank you for all your prayers!
Friday, 19 September 2014
(This article now published in the Catholic Weekly as "A perfect parody of street evangelisation")
Thursday, 18 September 2014
Albert is back in hospital. Only for a brief stay this time, we hope.
Over the past week we have noticed that he had been short of breath and struggling to get over a chest cold. Our local doctor had prescribed some antibiotics but the shortness of breath seemed to be getting gradually worse rather than better. Susie was convinced that all was not well and, as usual, her concerns seem to have been justified. This morning she took Albert to the children's hospital where he was tested, x-rayed and examined by the emergency paediatrician, who has diagnosed pneumonia.
Albert has been placed on a strong broad spectrum antibiotic via an IV drip and will remain in hospital for the next day or so for observation and further testing.
Add to this that Albert has also had various ongoing tests ticking along in the background over the past months which have come into focus this week. There is a condition, present only in Downs Syndrome children, and then only 10% of them, and then only for a short time as they grow out of it, called transient abnormal myelopoiesis. In simple terms it is an abnormality of the white blood cell count (bone marrow) and one of its features is that it predisposes the child to infant leukaemia. Albert's counts have been unclear since he was born due to receiving so many platelet transfusions in the first weeks of his life. The haematologists have been keeping tabs on Albert's blood and he is still within the danger range, but has not shown any signs of leukaemia.
So, no cause for alarm, but quite a bit extra on mum and dad's mind lately! As my wife said to me yesterday, we know that Albert is a gift from God objectively speaking, and all the theory of parenting Albert sounds good, but this stuff is really hard!
The daily grind of feeding him via a tube around the clock, needing to be constantly vigilant about the proper care of his tubes, dressings and monitors. Waking up suddenly to a shrieking alarm two or three times a night, shattering the small window for sleep between feeds, the fact that getting a smile takes a lot of time and effort, and the fact that everything on else in our lives seems to be on hold, all add up to a long, bone wearying year.
So, dear friends, if we have grunted wordlessly as you have told us how inspiring Albert is, it is because we do not feel inspired. We are grateful to hear that so many people have prayed so hard for him, because we very often cannot find the words to pray. We would be lying to you all if we pretending that this is easy, that it feels good, that we are can always rejoice in the challenges that come with being Albert's parents.
It is times such as this where our nightly family prayer has become so important. Each day the children joyfully drag us through the nightly routine we established so many years ago, so the psalms, decades and litanies we pray through gritted teeth at the end of each day are sometimes the only words we can spare for God that day. Other days, all we can pray is "Dear God, MAKE IT STOP!" Which, I assure you, is as ungrateful and petulant as it sounds.
God has blessed us mightily, but the blessings do not feel good at all. The best things in life always require a struggle, but these are hard blessings.
Dear friends, if you ever find yourself encouraging someone to see their child as a blessing from God, even though nurturing and raising the child will cost them a great deal, always remember that the goodness you are urging them to embrace comes with a cost. It is easy, oh so easy, to scold a single mother, or a couple who have just had the news that their baby has a disability, about the absolute goodness of human life and their duty before God to receive that gift with joy. And I want to make it perfectly clear here, we would still urge any parent to keep, nurture and raise a child God has seen fit to give them. But we will probably do so now with much more awareness of what we are urging them to take on.
This stuff is hard. Much harder than regular parenting (so far). It doesn't change a thing we believe about life, children, families and sacrificial parenthood but, please, do not imagine us any more faithful or special than anyone else struggling to be good parents to their children. If anything, this experience has clearly shown us our many flaws, and demanded we deal with them now. To be brutally honest, we are doing a rubbish job at it so far.
Wednesday, 17 September 2014
One of the most frequent things I have heard parents say is that they just want their children to be happy. The most healthy and instinctive emotion of a parent is to wish the very greatest joy and fulfilment for their child. Indeed, parents invest so much of their time, money and efforts into achieving this goal, into giving their children a strong head start in life.
Even those parents who choose to limit the number of children they have to a tiny fraction of what would have naturally occurred not so long ago, still most often cite the happiness of their children as their motivation for keeping the numbers low. 'I just want my child to have everything they need to be happy' is a common refrain we hear from other parents, usually as a kind of reflexive defense against the unspoken challenge of seeing us with so many children.
I think the motivation expressed here is praiseworthy. Even where it goes beyond the (possibly harmless) restricting of family sizes by legitimate means to much more damaging methods and motivations which place the health and very existence of babies at risk, the motivation to seek the happiness of their children is still good.
What people seem to miss, when deciding that less children equals happier children, is the fact that, all things being equal, children in large families are usually happier, more socially adept and more confident for the experience.
Another serious oversight is in the matter of babies in whom 'defects' are discovered. I have lost count of the number of times I have heard or read fathers and mothers of an unborn child justifying an abortion on the basis that the child's life would be 'unhappy'. Since they care so much about the child's happiness, a state funded 'counselor' advises, they should avoid causing any more unhappiness by allowing the baby to live. In Australia only 5.4% of parents choose to keep their baby after the baby is diagnosed with Downs Syndrome. yes, that means that 94% choose to end the babies life rather than allow it to suffer or be unhappy.
Assuming that avoiding the baby's suffering or unhappiness is the primary motivation for such abortions, these decisions are being made on the basis of false information! The facts are that Downs Syndrome babies are happier than anyone! Not only do 99% of people with Downs Syndrome report they are happy, the families around them also report unambiguously higher rates of happiness than average!
Yes, a Downs Syndrome child can be hard work for parents in particular. But let us dispense with the insidious falsehood that making decisions while the child is in the womb is about the happiness of the child, of the siblings, or even of the parents.