Today is my youngest son Josiah’s third birthday. Recently, my older son, Asher, turned five. For me at 35, my birthday is not super significant. It’s a good milestone each year, and a chance to celebrate with those I love, but it doesn’t hit for me the same way as my kids’ birthdays. I imagine there’s a certain amount of reflection that is unavoidable as a parent celebrating your child’s birthday, and when your child’s health journey is, shall we say, less than straightforward, it feels like this is amplified even further. Just last week we had one of those moments where everything sort of pauses or slows down temporarily due to a health scare, as we wait to find out what is wrong below the surface, what can be done, how quickly and what the outcome will be. Thankfully, this time was a minor one, but more on that later.
This reflection is healthy, I think, and worthwhile, but has its challenges too – but first, an update…
Asher, our five-year-old is charging ahead, growing and changing and developing quickly, but all with his signature brand of ‘five going on thirty-five’. He is intelligent, funny, boisterous, inquisitive and thoughtful. He is quick to respond and has a very cheeky smile. In one sitting, he can go from larrikin to thoughtful communicator with mannerisms well beyond his years. He is creative, loves a good story-telling session and also enjoys being active with his cousins and friends. Life is never dull with Asher around and we wouldn’t want it any other way! Although it can be a bit paradoxical, having a brother to play with but frequently hitting the guard rails of possibility and safety when it comes to appropriate and accessible play given his brother’s physical disabilities, Asher is learning to navigate this pathway with an underlying love and care for his little brother that is heartwarming to see.
Asher has dealt with a lot in his five years with us, having to adapt quickly when health matters send family calendars and daily routines from straightforward to spaghetti. Sometimes we worry, or at least I do, that this is causing him to have to grow up faster than kids his age ‘should’ have to, or that it is placing particular pressures on him (and us as his parents) that might be detrimental for him in these formative years. Ultimately though, I rest in the fact that God has given us not one but two children, with a set of circumstances outside our control but well within His, and that when we come to the end of ourselves, there is (as is always the case, no matter what’s happening circumstantially) nothing lacking in God who is able to supply all we need.
It has been such a blessing to see Asher enjoying and memorising the stories from his Jesus Storybook Bible, showing interest in and trying to remember answers from the New City Catechism for children, engaging in family devotions, attending Kids’ Church, praying and doing lots of singing of gospel songs by Colin Buchanan (with other Christian artists now filtering into the mix as well, thanks to his time at Early Learning Centre/pre-school). We pray that Asher will continue to know that he is loved by us as his parents and by so many other family members and friends, and most importantly that he is loved perfectly by God. We also pray that God will reveal Himself to Asher and draw him even closer to Himself in the years ahead.
For those following Josiah’s journey, the short version update is he is doing well! Strap in for the longer version… Josiah’s vision, on the whole, doesn’t seem to be ‘progressing’ at a great rate of knots, at least not in terms of him obviously seeing lots of things he once couldn’t due to his cortical visual impairment (CVI). What is happening is that we are learning how to better reduce visual complexity in his surroundings and to use his preferred colour (yellow/gold) to make everyday objects such as his cup, door handles, hand towels etc. easier for him to locate and use.
His cerebral palsy (CP) on his left side still impinges his movement of his hand and foot, but we are very thankful that the diagnosis is one of mild hemiplegic CP and not severe as the neonatologists originally predicted. He has been walking assisted with a walker or with hands-on support for some time now, a far cry from the days when my wife and I would be down on the floor kneeling behind him and walking on our knees as we placed one foot in front of the other to help him learn the feeling of walking. His advances in walking over the last twelve months likely owe a great deal to the work my wife and Josiah’s physiotherapist have done in their therapy sessions. This has built leg strength and core strength/stability, which, along with a desire for independence and mobility have unlocked a new dimension for Josiah, enabling him to explore his surroundings. Another great blessing has been the purchase of a bike. Despite receiving many good things from the national disability insurance scheme, unfortunately a bike was rejected, against the strong recommendation of Josiah’s physiotherapist and occupational therapist. Thankfully, a disability trike just like the one Josiah had trialled and loved came up for sale just streets away from home, at a secondhand price, in great condition. With some relatively minor setup costs, we were on the road (the footpath, actually) in no time. It has been so wonderful to see Josiah enjoying getting out and about in a similar fashion to his brother and cousins while continuing to build leg and core strength. This too, in the long run, is likely to reap huge benefits for his walking and general mobility. Finally, Josiah’s use of his left hand plateaued for a long while after he outgrew constraint therapy. The good news on this front is that we have been able to connect with a doctor in Melbourne who has the reputation for leading the research and practice globally when it comes to bimanual therapy. This form of therapy will help Josiah learn to use his right side to interact with his left in more productive ways so that his left hand, though lacking some strength and movement, can assist him with daily tasks. We were fortunate to be able to visit this doctor recently and learn some strategies first-hand to assist in knowing how best to work towards this goal.
They say it takes a village to raise a child, and in Josiah’s case we are thankful for our village of family, friends and church family, but also for our village of medical professionals. We could not have known exactly what twists and turns this journey would take back in June 2018, or who we would be working with, but in addition to his amazing and dedicated physio, occupational therapy, vision and play-based therapy professionals, we are privileged to be working with one of the top CP doctors in the world as Josiah’s specialist paediatrician, the top bimanual therapy specialist in the world, and the top orientation and mobility specialist with extensive knowledge of CVI in Australia. What an amazing team and what a blessing each of these people are!
Of course, the village analogy holds true closer to home as well, and we continue to experience the love and support of our families who are so generous with offering their assistance along the way as well.
Reflecting on Josiah, on the occasion of his third birthday, he’s a happy, bubbly, giggly and talkative child who loves life, loves spending time with his grandparents and cousins, is learning and growing and developing at his own pace despite numerous ongoing challenges, and like his brother also possesses a cheeky smile! Sometimes it’s tempting to wonder what life would be like without the challenges, if he could just be free of them entirely. We still pray for healing and improvement and greater capacity for movement and vision, but we have also learnt, I think, to trust God to carry us through and to care for Josiah and enable him to overcome obstacles. We want to help him to ‘live beyond the labels’ written in his health records, not living in denial of the difficulties, but knowing that God is sovereign over them, present in them and provides a way through them, all while bringing glory to Himself.
The prayers we pray for Asher, we pray for Josiah too. May he be drawn to and come to know God more each day and each year of his life, whatever it holds.
Birthdays as Signposts of God’s Sovereignty
A while ago, a Christian friend made a comment that shocked me as it was quite counter to the way I look at our situation. Josiah landed in hospital the week before Christmas with Henoch Schonline Purpura, a strange viral illness that caused hives which turned into purple colouration like bruising across much of his body, plus swelling of the hands and feet, etc. Last week he woke vomiting foam mixed with blood, and so we had a CT scan to check for shunt failure, which thankfully was not the cause, and again had to wait for the doctors to get to the bottom of what appeared to be another viral episode. After the Christmas episode, this person made the comment to me one Sunday that they were not sure how we parented Josiah and coped as well as we do, in their eyes. When I commented that we don’t have it all under control but God does, the response was that if God was in control then this person wasn’t very happy with His plan.
Yes, there would be real benefits for Josiah if he didn’t have to deal with his health issues, but there are also real blessings and riches to be found in the valleys, not just on the mountaintops. I’m thankful God is in control. He is good all the time. He does have a plan. He doesn’t make mistakes. None of this is taking Him by surprise, and He does walk with us through it as He ensures His plan is accomplished, even through difficult, refiner’s fire type circumstances we wouldn’t choose for ourselves.
As we look back on the boys’ birthdays, they are times for reflection on the past, they are obviously also steps towards the future, but more importantly they are signposts of God’s sovereignty and fantastic reminders to thank God for His faithfulness.
One of the main things I hope we can teach both of our boys is that we do not have a God who is asleep at the wheel. We also don’t have a God who is a master clockmaker who wound up the universe and now just sits back indifferently or even with love but from afar, waiting for the clock to break. We have a God who is with us in the fun and the laughter and the joy, and in the confusion and fear and sadness, when they come. The hope we have in God is an anchor for our soul, firm and secure (Hebrews 6:19), we have many reasons to give thanks in all seasons and circumstances (Psalm 136), and in the ups and downs of this life we can look ahead to our true eternal home and step forward through the inevitable valleys as those who are sorrowful, yet always rejoicing (2 Corinthians 6:10).