Friday, 19 September 2014

Comedy as good feedback?

The walk through the tunnel to Central station is usually accompanied by the sounds of buskers, beggars and evangelists trying to attract the attention of busy commuters. As entertaining, tragic and annoying as these are (respectively), this morning was something different.

At the beginning if the tunnel were a small group of young men wearing plastic Viking helmets and what they may think were Viking style tunics. This hastily assembled costume was, however, the only thing 'Viking' about them. They had displayed a series of signs, billboards and pamphlets almost perfectly imitating the garish splashes of primary colours used by the evangelists not thirty meters away. Rather than a Viking war cry, these faux Scandinavians swaggered and shouted in an almost perfect parody of their Christian counterparts, save that the god they called people to consider was none other than Odin, the ‘furious one’, mythical king of Asgard. 

The evangelists seemed a little more subdued than usual this morning. It would be nice to imagine that they were reflecting in some way on this parody. I felt sorry for them all the same. They had the courage, after all, to stand up and publicly proclaim their belief in Christ. But long after I had passed by both groups I was still wondering if such a parody of well-meaning Christians was a good or bad thing for the faith.

I honestly think it is a good thing. Not just because it is good to laugh, and especially to laugh at ourselves, but because humour can be a gentle and constructive criticism where we Christians make mistakes. And yelling at passers-by as a method of evangelisation is a mistake.

Yelling a string of selected Bible verses at passers-by is neither effective evangelisation nor playing to the strengths of Christianity. It is true that there is a time to speak the truth in love, but people are generally better disposed to listen to Christians where we have first offered practical love in the form of providing for people in their hour of need, and by witnessing to the truth by demonstrating the forgiveness and love of Christ in our families, churches and communities.

I am certain these evangelists receive a good deal of feedback which is hostile and unproductive, just as any public presentation of Christianity usually provokes some hostile responses. But perhaps this near perfect parody will gently and with good humour point out the flaws in their method. After all, when your methods can be almost perfectly duplicated and, with only a change of the central name on your placards, used to evangelise for another deity, you might want to reconsider whether your methods accurately represent the God you follow.

If our methods are not clearly distinguishable as unique to Christianity, reflecting the patience and active practical love of Christ, then perhaps a playful poke is warranted and needed. (It would be different if the parody had involved some form of deliberate blaspheme against something holy, but the only thing that connected the two groups, and the Central humour in this parody was the presentation and mannerisms of this deeply flawed methodology.

I applaud the young men for using a sly parody to make their point with humour, rather than the usual, less constructive responses these well-meaning evangelists endure.

Thursday, 18 September 2014

This parenting thing is hard!

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

I just want my child to be happy!

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.

It is true that there have always been parents who regard children as an interruption and inconvenience to their adult life, and others who have viewed children as kind of accessory they need in order to assure their own happiness. Some modern examples include the push for designer babies, surrogate babies and so on. At least in these cases there may still be some good desires to foster and nurture a child. (The baby doll phenomenon is possibly a stark reminder of how crazy the baby as a product/accessory can get.)

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. 

Children are happy because they are loved. Parents are happy because their children are happy, and because they are loved in return.

Monday, 15 September 2014

Albert's first Mass

I am delighted to report that Albert had his first social outing, a week ago, and yesterday attended his first Mass ever! (I don't have a photo because Mass is not the place for happy snaps.) He seems to have done very well considering he was seeing the big wide world for the first time without some sort of hospital emergency.

We have not yet heard from the specialists about the possibility of more surgery but, the more we research, the more a surgically inserted stomach tube seems to be the best way forward. Albert still suffers from reflux most days and some of the fluid inevitably finds its way into his lungs.

Unfortunately he has been puffing a little harder over the past few days and today we took him to our family doctor. It seems likely that Albert has the beginnings of a very mild Pneumonia style lung infection, so we will be taking it carefully for a few days.

Albert continues on his slow plodding path in all other ways. He remains very alert and responsive, particularly to his siblings. Dad is getting smiles more regularly and Mum has found the secret giggle button that exists somewhere on all our children.

The sound a child giggling with that pure abandonment to joy, especially after so much silence, is one of the truest balms for a weary soul.

Wednesday, 3 September 2014

The Barium Test

Today has been a day of mixed news. I am happy to say that Albert is recovering strongly from his chest cold and is breathing much more freely today. He is still unwell but very clearly on the mend.

Today Albert went to the children's hospital for his latest round of tests, including a Barium swallow test. The aim of the test is to discover if Albert's problem with feeding is physiological (mechanical) or developmental (hypersensitivity to food in his throat, due to lack of experience in his first six months, could cause him to react out of surprise and alarm when he feels food in his throat).

There was some good news. Albert successfully swallowed two mouthfuls of solid food (puree fruit) and, though he gagged on subsequent spoonfuls, the problem seemed to be hypersensitivity rather than physiology. He did not do as well with the liquid test. It was immediately apparent that about 90% of the liquid was going directly into Albert's oesophagus (the breathing tube in his throat). It seems that our boy has a physiological (mechanical) problem swallowing liquids.

The end result, for now at least, is that we are to feed Albert a few spoons of soft baby food, up to twice a day (as long as he is enjoying it), but we are to stop all attempts to feed him liquids. No child will live very long without liquids, neither will a few spoonfuls of food sustain him, so Albert will remain on tube feeding for at least another six months, likely more.

The problem is that the nasal gastric tube he presently uses is only a temporary solution, not really designed for the months we have already used it for, and certainly not for half a year or possibly even years ahead of us. This means we are expecting to meet with a paediatrician at the feeding clinic to discuss the way forward. The most likely solution is that Albert will require surgery again, this time to place a gastrostomy tube into his abdomen for feeding. The advantage of this tube is that his face and his airways will finally be free of tubes and we will have more direct access to his stomach, bypassing the danger of accidentally pouring milk into his lungs through a nasal gastric tube. The disadvantages include the risks of surgery, albeit not as traumatic as his previous date with the knife, and the semi permanent nature of the solution.

The main problem for Susie and I is that it feels as if we are giving up. We know that is not the case. There are a good many ways to help Albert progress from here. But all of them are very much in the long term. This feels more than a setback. It feels as if we are giving up on a natural solution to this problem. It is a small thing in comparison with where he has been, but that doesn't make his anxious parents feel any less depressed about it. Albert, on the other hand, is enjoying the his strong recovery from the cold and thriving in all other ways.

Once again, the little champion is teaching his parents!

(The picture in the frame is of Isaak at 6 months old in the same baby suit Albert is wearing in the photo.)

Thursday, 28 August 2014

Yellow Alert!

Lest anyone should panic, Albert is generally well and has steadily improved over the past month at home. His muscle control continues to improve, albeit slowly, and his responses to his family continue to be swift and clear. A few ongoing matters are of some concern and I wanted to beg for your prayers once again.

Albert has caught a nasty chest cold. While he is not in the same kind of danger he would have been a few months ago, his breathing is still not at peak and he is expending a lot more energy than usual just managing to stay afloat. He has been prescribed antibiotics, pain killers and a mild steroid to help his recovery, but his sleeping and waking hours are not pleasant for him at present and we ask for your prayers for a swift recovery.

Please pray, also, that his parents are able to overcome our own sniffles and the exhaustion of constant care in order to be patient and loving parents that all of our beautiful children deserve.

Less immediate, but of greater concern, is the problem of Albert's feeding. Since Albert still takes his food via a nasal gastric tube, various medical professionals have started to voice their concern over the fact he has not yet learned to feed via his mouth. He has the attention of several specialists who are working through a program to train Albert to swallow and retain food, but progress is agonizingly slow. Our main concern is that, if Albert does not demonstrate sufficient progress in the near future the doctors are likely to push for a permanent gastric tube, which would need to be surgically placed. In other words, Albert would need surgery to place a tube directly into his stomach, in order to be fed.

This is a much more invasive and complicated solution than we would like. Please pray with us that Albert progresses well enough that he will not need the surgery.

Monday, 18 August 2014

Albert's half birthday!

Six months ago, on the 18th of February 2014, Albert Holmes was born after a long and difficult labour spanning over two days. He failed to 'pink up' and within a minute was being assisted with an oxygen mask. Within a few hours he was transferred to a specialist children's hospital. I kissed my exhausted wife goodbye in her recovery ward and followed the ambulance in my own car. The doctors were calm, but gently advised me to prepare for the worst.

Thanks to a swift response from a priest who is a dear friend, and with the immediate permission from our bishop, Albert was baptised in the Intensive Care Unit later that same evening. When I finally staggered home that evening, I posted a brief request for people to pray for Albert's health.

On day two, my amazing wife walked out of her recovery ward and I drove her to see Albert in ICU of a different hospital. While we were busy with doctors and nurses, some friends had been sharing my request for prayers. Before we knew it the volume of prayers and well wishes had gone beyond our immediate circle of friends into tens of thousands of people around the world.

So many friends shared our ups and downs through the weeks that followed, rejoicing with us when he came home for the first time, just in time for Susan's birthday, and joining us in prayer again when he was rushed back into ICU in a much worse condition than before. You supported us with prayer and encouragement as he went under the surgeons knife, and as he struggled to recover. You rejoiced with us when he finally came home again.

Rejoice with us again, dear friends, that today Albert is celebrating his half-birthday. In some ways it seems as if it has only been 2 months. Most of the time it feels as if it has been six years.

Albert has a cold. He is not at all impressed with today, but he can loudly, confidently and eloquently inform us, with a variety of baby syllables that sound awfully like expletives, just how unjust it is that he has a snotty nose. Even listening to his angry growls between coughs brings a small smile to my face. It is sad to see his in any discomfort, but the fact that he can struggle and yell is such an advance.

So what now? Albert is not out of the woods by any stretch of the imagination. We are still praying for a breakthrough in teaching him to feed orally (we still feed him through a tube) and we are praying that his strength continues to grow so that he can be free of the CPAP by the end of the year.

For now, however, share our joy and celebration, and eat half a cake to celebrate Albert's half birthday with us!