Be strong and take heart

Emily Kingsley and her son Jason

In 1974, Emily Kingsley gave birth to a son she named Jason. Just after Jason’s birth, the doctors informed Kingsley that Jason had Down Syndrome and that as a consequence, Jason would never be able to walk or talk. The doctors recommended that the best thing for everyone would be for Kingsley to relinquish care and place Jason in an institution. While Kingsley was wrestling with this proposal, the nursing staff discouraged her from breastfeeding Jason or even visiting him in the nursery. 

Three days after Jason’s birth, a social worker visited Kingsley in the hospital and offered a completely different approach to Jason’s future. The social worker informed Kingsley about a new approach being used with children like Jason called Early Intervention. Advocates of early invention, Kingsley was told, were suggesting that providing an enriching and stimulating environment could improve the skills and abilities of children with disability and prepare them better to live in the world as independently as possible. While it took some convincing, the professionals at the hospital eventually allowed Kingsley to take Jason home and begin trialling this new early intervention approach with him.

While the doctors in the hospital claimed that Jason would never be able to walk or talk, the reality is that not only was Jason able to do both of those things but Jason grew up and became a TV actor appearing in 55 episodes of Sesame Street. Jason and his mother co-wrote the Sesame Street song Count Me In in 1985 about including people despite their differences and in 2007, Jason co-wrote a book with Mitchell Levitz called Count Us in: Growing Up with Down Syndrome. 

In 1987, Emily Kinglsey wrote a poem about her experiences of having a child with a disability. That poem, entitled Welcome to Holland, has offered comfort to many families of children living with disability. The poem makes regular appearances in welcome packs for families joining disability organisations or networks as a way of helping parents make sense of the unexpected journey they have found themselves on. You can read the full text of the poem here, but in brief, the poem draws a parallel between preparing for the birth of a child and planning for an overseas holiday to Italy. The lead up to giving birth is like the time we might spend reading travel guidebooks about Italy, becoming familiar with the local language and culture, purchasing the right currency, and mapping out an itinerary. But after planning so long for a trip to Italy, when the plane finally touches down and the holiday is about to begin, rather than being welcomed to Italy, the flight attendant announces “Welcome to Holland!” At first there is shock and disappointment – this was not what we planned for! I didn’t pack the right clothes for Holland! But after purchasing new guidebooks and a new language manual and taking the time to discover all the breathtaking scenery Holland has to offer, there is an acceptance that even though this wasn’t what we planned for, that Holland has some truly beautiful things to offer. There is an honesty in the poem in expressing the grief over never being able to make it to Italy, but the author finishes by saying “But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.”  

Unlike Kingsley, our daughter’s health issues became evident slowly over time. After experiencing bacterial meningitis as a 4 month old, the risk of brain damage and hearing loss were incredibly high but it was unclear at that point how much, if it all, she would be impacted by this. For us it has been a gradual awareness of our daughter’s health challenges and the things she finds difficult. So perhaps rather than landing in Holland on a plane, we are on a cruise ship that has slowly changed its course and destination. But whatever way you bend the analogy, I have always found this poem to be encouraging. I find it a helpful reminder that even though life rarely turns out the way you expect it to, that we can still find joy in the new set of circumstances that we find ourselves in. 

For other families I know, Kingsley’s reflections don’t quite do justice to the shock and readjustment of finding yourselves in ‘Holland’ which doesn’t feel much like a holiday at all. While a holiday is short with a clear finish date, this isn’t the case with the responsibilities of parenting a child with special needs. The reality is, we aren’t simply on holiday in ‘Holland’ but we’ve taken up permanent residency. And with this permanent residency, there are so many new challenges to face and barriers to overcome. 

But while this is certainly the case, I still find the reminder of being a long-term resident of ‘Holland’ encouraging. Our family isn’t alone on a dessert island attempting to navigate a way forward on our own but we are among others who have gone before us and already know the language. We are among people who have learnt about ‘Holland’s’ culture and people and are more than willing to share their knowledge and experience with us. And so even though we have ended up at a destination somewhere quite different to what we were expecting, there are a community of people already in ‘Holland’ who are also permanent residents here and who understand all the challenges as well as the joys that ‘Holland’ has to offer. 

In fact, one of the greatest examples I’ve seen of people welcoming newcomers into ‘Holland’ is in The 139 Collective. This is a place where families are reminded that they are not alone on their journey but there are people ready to greet you with open arms and help you navigate this new and foreign place. Through The 139 Collective, many Christian families have found emotional and spiritual support, recommendations for specialists and therapists, and most significantly, people to partner with you in prayer and to share in your hardships and your joys at every step of this journey. 

And most significantly, The 139 Collective offers us all a constant reminder that it’s not just the citizens of ‘Holland’ that welcome us with open arms, but that God meets us at this new destination also. Whatever plans we might have had for ourselves and our children, we are reminded that this new place we find ourselves is not a diversion or distraction from God’s plans and purposes for us. But God walks beside us every step of this journey helping us to navigate this new terrain. We can trust that this new destination wasn’t a surprise to God and He will continue to equip us with all we need to adapt to our new location. 

The Psalmist reflects on this concept in the very Psalm that this collective is named for. There the Psalmist writes: “Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast” (Ps. 139:7-10). I don’t think it is a coincidence that in the same Psalm affirming the value of all human life in the womb that the Psalmist also offers us comfort that God is with us in all the highs and lows of life’s journey. Take heart, brothers and sisters, in a loving God who will uphold and sustain you through all life’s challenges and that He has provided us with a community of believers who are here with you for the journey: “Be strong and take heart” (Ps. 27:14). 

The views and opinions expressed on this site are those of the authors and do not necessarily reflect the official position of The 139 Collective. As a collective, we seek to humbly learn from each other’s experiences and remember the unity that we share in Christ even when our current viewpoints on the difficult topic of disability differ.