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!

Monday, 11 August 2014

The "Thank You" post

For a long time now I have been wanting to write a post to thank all the wonderful people who have made such a difference over the past five months or so. I must have sat down to write this post a dozen times over the past months. I never get far. Each time I would write a few lines, perhaps a draft outline, and then I would be paralysed and unable to continue.

When I get writer's block on a particular subject, the best way to deal with it is to pretend I am writing something else. So here is my post about why it is so hard to write a thank you post. :)

The reasons why it is hard to say "thank you!"

Reason One: As soon as I sit down to write a thank you, I am immediately overwhelmed by the sheer number of people who have helped us. When we first moved to Sydney and enrolled our oldest son in Kindergarten, we knew about 3 families in Sydney. I had a couple of work contacts and we made our first Sydney friends in the first few months here. Our oldest son is in Year 10 now and, with all the rush and bustle of ordinary family life, we had not really had time to stop and consider how things have changed. We have already written letters of thanks to the medical professionals who have worked wonders for Albert. As formidable as their numbers are, they are a small crowd compared to the number of dear friends who constantly offered to cook meals, bake treats, buy and transport groceries, babysit children and generally be helpful in any way they could. We have been surprised, overwhelmed and deeply touched by the friends who have insisted on helping, begged us to tell them ways they can help, and sometimes even bullied us into receiving substantial help along the way! Without the practical love of these friends, these months would have been very much more difficult and very lonely.

Add to this the small army of families organised by the School to provide us with meals each week night and the number of people increases dramatically. This year we have six children enrolled in six different classes. Many parents of other children in our children's respective classes volunteered to cook meals and were organised into rosters by class parents. This ensured that, no matter what chaos and medical mayhem had battered and bruised us during a given day, we always had a home cooked meal each night. At first we tried to keep a list of all the people who had dropped us a meal, intending to write to each of you separately, but we soon realised that keeping track was beyond us. Sometimes our children answered the door and forgot to get names, other times we would open the door to find only a hot meal on the doormat. We simply don't know who gave us what. The value of those meals in helping our family to keep plugging through a very difficult time is impossible to describe. I am sure that any number of you can remember me answering the door dishevelled and mumbling vague thanks. I wish I had the right words then, or even now, to tell you how much that meant to us. There were many days when the only thing that went right was opening the front door to a smiling face and a hot meal.

As if this small army of wonderful people were not enough, the number stretches beyond our imagining when we try to thank those people who have prayed for Albert, and pray for him still! At first I was desperate. I asked every friend I have contact with to to pray. At the time I remember thinking, "perhaps a dozen or so might have time to pray for Albert, which would be good." We were, and still are, stunned at the sheer number of people who have told us they prayed for Albert, and who have kept up with the news and taken prayer intentions directly from this blog. We know that many of my friends, extended family, students and colleagues have joined us in prayer, but we were astounded and overwhelmed by the support we received from contacts all around Australia, North and South America, Europe and even from Africa! Teachers have told me that their whole classroom prayed for Albert each morning for months. Some classes are still asking after him and promising to pray. One student and friend even used his gift of a precious few seconds meeting the new Pope to beg the Holy Father to pray for our boy.

If all this seems a bit much to take in, you are right. I find it impossible, even now, to get my head around the staggering number of people, the sheer weight of the hours of prayer, cooking, transport and babysitting that people have willingly and cheerfully given us. There is most definitely, no way we can even begin to repay you all. Which brings me to the second reason it is so hard to say thank you.

Reason Two: We like to help people. At work or at home, with friend or stranger, our family get a kick out of being helpful to someone else. Susan, in particular, has spent countless hours hand-crafting small presents, designing cards, baking something delicious, for someone she thinks could use a pick-me-up. (I like to help people too, but even good theology is no competition for Susan's cakes!) What is the problem with this, you may well ask? The problem is that we were proud. We did not realise we were proud until we saw the generosity of people mount up beyond a level we could ever repay, and we realised we just had to be humble and receive it all in good grace. To all of you who prayed, cooked and helped, in addition to your invaluable practical help, you have been God's instrument in knocking some hidden pride out of us, and teaching us to be humble. Learning humility is usually a very difficult lesson, but you taught us gently with each meal delivery and each promise of prayer. Even as I struggle to comprehend the numbers and volumes involved, I also cannot find words to adequately express my thanks for this precious gift.

Reason Three: Albert's story is just beginning. It seems as if we are now through the gut wrenching months where any week in which Albert did not come close to death was a good week. Now things have calmed down. Even though the emergency and our immediate need for assistance has passed, it feels strange to be thanking people as if the story were over. Albert is home now. It feels as if we have started a new chapter in this story. A slower and less dramatic chapter, but still a difficult one in many ways. Albert is still effectively housebound for fear of catching a simple cold, and because he needs a CPAP machine whenever he sleeps. Life is different, but not impossible. We do not need meals now so much as our friends' patience with us as our family adjusts to new rules and routines.

Reason Four: We are still so very tired that thinking hard enough to put two coherent sentences together is an effort. We knew that any attempt to thank you all for your astounding generosity would fall woefully short. I simply do not have the words to properly express our gratitude. Nevertheless, as G.K. Chesterton once wrote, anything worth doing is worth doing badly. So, here goes.

To those who have kept us in meals, helped with transport, child-minding, with reassurance and comfort and, most of all, with persistent prayer, we offer our sincere and deepest thanks. We can think of no way to repay you. Thankfully, and thanks to you, God has taught us not to think that way at all. The best way we can imagine to honour your generous gifts is to strive to be a family in which Albert will thrive and, when circumstances allow, to share the amazing gift of Albert with you all.

In the years to come we will tell Albert parts of the story of his early life, and we will teach him to pray for those generous souls who loved him in so many practical ways before he even came home.

No doubt there will be many more to thank along the way as Albert's story continues to unfold in the months and years that follow. We hope very much that he continues to be surrounded by excellent people such as yourselves, and that his life becomes an ongoing blessing to us all.

Wednesday, 6 August 2014

The great gift of Gammy


By now most people have heard the story of the Australian parents who arranged to pay a poor Thai lady to bear a surrogate child for them. When Pattaramon, the Thai mother, was found to be carrying twins, she was told to abort one of her babies. She refused on religious grounds and gave birth to two living babies. One of the babies was given up to the Australian parents in exchange for cash. The remaining child, named Gammy, has been diagnosed with a congenital heart defect and Trisomy 21, or Downs Syndrome. He was left in Thailand with his surrogate mother.

It is very sad that first world people continue to use the desperation of poor families in third world conditions to gain favours, at great personal cost to the poor people and their families (Pattaramon is married with two other children). It is very sad that some people are ‘renting’ other people’s reproductive organs for money.But the greatest sadness I feel in reading stories such as this is concerning our society’s attitude toward children in general.

The problem seems to be that a disturbing number of parents seem to have fallen into the habit of treating a child as an accessory for couples, rather than couples sacrificing everything for the good of their children. While this story is one obvious example, it is only representative of a problem that has infiltrated almost every part of our Western society.

These parents sought to purchase a child as a commodity. They used an unusual method to achieve their goal, but they are by no means in the minority in Australia. Many people seek to buy a child within Australia, by means of various fertility programs or by direct creation of human beings in ‘test tubes’. Most others are fortunate enough to avoid the initial costs and conceive naturally, but the same mindset that treats children as accessories still seems to influence our thinking.

Where some couples will pay big dollars to buy a child, others will spend money to avoid having children. It is the same mentality at work. Children are considered a convenience to adults, allowed or demanded at will, but never when inconvenient. Some people cite ecological reasons for limiting the number of their children, most will admit that practical and financial concerns dominate their decision to restrict their fertility.

While there are some proper and admirable concerns which should guide potential parents in careful stewardship of the gift of their fertility, far too many of us are dominated by the fear that the addition of a baby to our house would be costly, disruptive and require a good portion of our life in thankless tasks for a demanding and generally ungrateful human being. We want to be free to continue pursuing our life goals, or at least have some time to relax and enjoy the fruits of our hard work. That isn’t so unreasonable, is it?

It is true, a newborn child is about the most disruptive thing that happens to a family. No matter how gentle and patient your temperament, most parents are surprised to discover in themselves moments of deep frustration and resentment of the constant demands of small children. And this with a perfectly healthy child! If the child is born with complicated health needs the effort and expense grows even more. Perhaps this is why Australian parents, though they were prepared to pay to obtain a child, when faced with the news that their unborn child has a complicated health issue, choose to dispose of that child by ending its short life before it is born. This sad option is often presented to parents as compassionate and merciful, because it seems to avoid the long and difficult road of living with a health problem or a disability.

As the story involving Gammy demonstrates clearly, this solution may seem to make life less complicated and perhaps less expensive for the parents, but it is never merciful or compassionate to the baby. Nor to any adult involved in the process.

Of much greater importance is that the attitude fails to correctly understand the value of each and every human being. We are, all of us, valuable and wonderful by virtue of our existence as an individual of the (mostly) rational species known as human beings. We are not more valuable because we cost less, or earn more, than others. If the equality our society claims to strive for means anything at all, we are not accorded human rights because we are born with a particular skin colour nor to a particular sex. We are not more protected and valued because we are taller, shorter, more or less heavy, nor because we are blonde, brunette or redhead.

I find Gammy's story tragic, not so much because it seems that the parents or agents involved placed less value on a disabled child than on his twin sister, nor even that they felt they could dispense with the unwanted child by means of pressuring the mother to terminate and later by abandoning the child. I am disturbed by the fact that the worth of this child, and all children, seem to have been judged worthy of life on the basis of their cost and/or convenience to their parents, and not on the basis of their shared humanity.
There have been many tragic stories in the news lately, but this story touched me deeply. In February this year, my wife gave birth to our eighth child, Albert. Albert was born with a congenital heart defect and has struggled for life ever since. His struggle has been complicated (but not caused) by the fact he has Trisomy 21, commonly known as Downs Syndrome.

When Albert was only five days old I was praying that God would help me grow strong enough to be the father Albert deserves, when I realised that I was thinking and praying as if I were required to give everything to Albert and expect nothing in return. Albert is a young man with health problems, but no less a man. It may not be that Albert needs his family so much as his family need Albert. Since that day I have been constantly amazed by the positive effect Albert has had on each and every one of our family, and on the family as a whole. 

The fact is that, although some aspects of his life have been difficult and complicated, Albert has been a shining light of grace, hope and joy in our lives. Our family has become more united, more loving, more joyful and each one of us have increased in patience, love and maturity. Even in only the first months of his life, Albert has given these priceless gifts generously at the comparably negligible cost of sleepless nights and the company of good many health professionals.

While there are costs and effort involved in our latest complicated child, (they are all complicated in their own way), we are excited, eager even, to see what surprises God has in store for us in Albert.

The happy part of Gammy's story, the news that makes me want to shout for joy hearing it, is that Gammy is now alive in the arms of the woman who refused to end his life in the womb, and his precious life will transform that family with many great gifts, just as Albert is transforming ours.

(This article was published in the Catholic Weekly, in August 2014)



Thursday, 31 July 2014

... Jiggety jog (#86)

A quick update.

After initial tests for the most nasty forms of viral and bacterial infections came back negative, Albert was discharged from the local hospital early this afternoon. The doctors say we did the right thing. That is, we responded with just the right amount of caution. The symptoms could very well have indicated anything from the beginnings of a serious viral chest infection to another cardiac failure. As it stands he seems well enough today.

The doctors have advised us to reduce the volume of his feeds considerably, and increase the frequency. In other words, give the same amount of food but spread over double the feed times. We have noticed that medical professionals based in hospitals tend to prescribe treatments that would require a small army of nurses working in shifts in order to be carried out effectively. I think the doctor was a little startled at my response when he told me to feed Albert a small amount every two hours, around the clock. I laughed out loud. Since reducing his feeds seems to have been one possible factor in his recovery, however, we will be reducing his feeds and gradually increasing them again while watching his symptoms closely. Once again we begin a delicate balancing game.

Albert himself is relatively unconcerned. Having had a very late night last night he went to sleep early and has been happily snoozing ever since.


Back in the old room (#85)

Here I am, back in one of Albert's old rooms. The room, in fact, that he was given back in April, to isolate him from other patients when he developed the first symptoms of chickenpox.

Let me reassure you that Albert is presently sleeping and seems to be OK. His visit to the hospital today has been uneventful and he is being kept overnight for observation.

Earlier this week we became concerned that Albert's respiratory rate seemed to have been slightly higher than normal. An additional concern is that the machine that monitors Albert's vital signs overnight gave us two alarms on Monday night. That particular machine only alarms if Albert has not taken a breath for the last 20 seconds. In each case, we were able to quickly apply simple methods to help Albert resume breathing, but the experience of waking to an alarm, and forcing oneself to keep calm enough to remember the correct actions, is not one I recommend. Albert has visited our local doctor almost every other day to check that his lungs were clear and that he seemed in good health generally. Apart from a cough and an occasional sneeze, he has seemed as well as ever.

Today, however, he was puffing like a steam train. He was also sweating, which we have not noticed him do before. He is not running a fever, nor can we detect any sign of infection or disturbance in his lungs, so the cause of the sweating is a mystery. Mysteries are not fun where Albert's health is concerned, so I decided to take him to the hospital for a complete checkup.

I was delighted that Matilda agreed to come to the hospital with me, since Albert has taken quite a shine to her lately. It was to Matilda that Albert, having endured two doctors examinations, a chest X-Ray, a full Electronic Cardiograph (ECG) and approximately half a dozen probes stuck to his skin and later removed, could still give us the cheeky response you see in the picture here.

While all of his test results failed to show anything out of the ordinary, and his general signs are positive, the paediatricians agreed that his respiratory rate was a concern and the doctors are concerned that he may be at the beginning or the end of a viral infection which has not yet revealed itself fully. They admitted Albert to the hospital in order to observe his progress more closely overnight.

So here I sit, on the makeshift chair/bed beside my son's hospital bed once again. This time under much less stressful circumstances than on previous occasions. Nevertheless, your prayers for Albert continue to be very much appreciated.



Thursday, 24 July 2014

Blurred weeks (#84)

Every parent can tell you that each new child is a new adventure. Just when you start to feel confident that you may have this parenting thing more or less worked out, along comes another unique and wonderful tiny human being to completely upend your world. We have experienced this shake-up with each and every new baby, but this one is different again.

The past few weeks have gone by as a blur of four hourly tube feeds, learning the trick of fitting the CPAP mask without waking a sleeping baby, worrying about the smallest change in Albert's condition and trying not to sleep on public transport on my way to and from work. While I have been at work writing lectures and tidying up administrative matters for the coming semester, Susan has been watching Albert's smallest coughs, sniffles, cries and even his breathing rate, trying to get some idea about what is 'normal' for our newest boy.

There have been more than a few trips to the local doctor (GP) and plenty of anxious calls from work during lunch break. Needless to say, this has been exhausting, particularly on Susan.

Today was our first check in with the cardiac specialist since leaving the hospital. It seems that Albert's heart surgery has continued to display all the signs of being a complete success, and he has no signs of the old pulmonary hypertension (dangerously high blood pressure in his lungs). The local doctor, the specialists and our own observations have confirmed that Albert has no chest cold, nor any signs of infections. Nevertheless, he continues to cough and splutter regularly, as if he has a cold. We are told that this could be a mild reaction to the feeding or breathing devices, and that it is an 'acceptable' side effect. We are not scheduled to see the respiratory team for a little while, so we will have to be content with current assurances.

To be honest, apart from Albert's coughing and occasional angry cry, he seems to be thriving at home. He responds quickly to familiar voices, smiles more regularly (though getting a smile is still hard work) and often coos away at a light fitting or a wall as most of our babies have before him. His last weight in shows that he has gained the best part of a kilogram since leaving hospital!

It is a long slow plod down this road, but we do seem to be heading forward.