Another month has flown past and Hannah is now more than 2 months old! She’s smiling, gurgling and holding her head up like a pro. And we’re loving getting to see her personality shine through. She is such a delight and provides us with so much joy every day.
Hannah has passed her recent medical checkups with flying colours and is putting on weight well. Her oxygen levels remain right on target, one nurse even thought the machine was broken and retested her because they were so good! Her cardiologist is particularly happy with how her shunt looks, and has given us a timeframe of August for Hannah’s next operation. I will explain more about that procedure in the next month or two.
During the last month we have transitioned to exclusive breastfeeding. It took a day or two for Hannah to adjust to the change but during one feed something just seemed to click and she hasn’t looked back. Not having to express and sterilise everything has made my days much more flexible, and given me more time to sleep too! I expect to be back expressing during Hannah’s next time in hospital, but I am confident that she will continue to breastfeed well in coming months.
Recently I met with our friend whose daughter was in the Grace Centre at the same time as Hannah (you can read more about that here). We give thanks to God that Evie is also thriving. What struck me from our catchup was how far ago our time in ICU already seems. Settling in to normal home routines and charting all the baby milestones has been a great blessing for that. I think it will be helpful during Hannah’s next hospital stays to remember that even if it is all consuming at the time, it won’t be like that forever. And now that we know how fun its been having Hannah home I’ll be wanting to get home quickly again!
One of my first posts explained how we found out about Hannah’s heart condition during my pregnancy (you can read about it here). Over the past two months I’ve had more time to reflect on the experience of being encouraged to terminate the pregnancy, especially as Hannah is now here and I can’t imagine life without her.
The topics of medical eugenics (good genes), bioethics, disabilities and continuing with pregnancies when you know the baby has an abnormality are ones that have been of interest to me for a number of years and not just following Hannah’s diagnosis – though they’ve obviously become much more personal over the last year. I think it continues to be an area where Christians can and should have very distinctive views to the rest of society and where we can love and advocate for the most vulnerable and defenseless people in our world – many of whom cannot speak for themselves.
There are a number of books / articles and blogs which I have found useful in thinking about these issues further. Some of them might be interesting to you too…
Fearfully and Wonderfully Made by Megan Best
Don Carson writes: “At last—a single volume examining beginning-of-life issues that is equally competent in biology, theology, philosophy, and pastoral care. This is now the ‘must read’ book in the field, a necessary resource not only for pastors, ethicists, and laypersons who share her Christian convictions, but also for anyone who wants to participate knowledgeably in current bioethical debates.” Some of the questions considered include:
- What sort of contraception, if any, should I use?
- When does human life begin—at fertilisation or at some point after that?
- What are the arguments for and against abortion?
- Is it OK to use genetic screening and other pre-natal tests to check for abnormalities in my unborn baby?
- Should Christians use IVF and other assisted reproductive technologies?
- What is the current state of embryonic stem cell research?”
Disability and the Gospel by Michael Beates
“Michael Beates’s concern with disability issues began nearly 30 years ago when his eldest child was born with multiple profound disabilities. Now, as more families like his are affected by a growing number of difficulties ranging from down syndrome to autism to food allergies, the need for church programs and personal paradigm shifts is greater than ever. Working through key Bible passages on brokenness and disability while answering hard questions, Michael offers helpful principles for believers and their churches. He shows us how to embrace our own brokenness and then to embrace those who are more physically and visibly broken, bringing hope and vision to those of us who need it most.”
Be Still, My Soul: Embracing God’s Purpose and Provision in Suffering edited by Nancy Guthrie
I haven’t read this book yet, but it’s on my list to read this year. “Since the beginning of humanity, the question of suffering-why it happens and how God works in it-has existed. What are you doing, God? Why is this happening? Where are you? These questions fill our thoughts when we experience deep pain and tragedy. Having lost two young children who suffered from a rare and incurable disease, editor Nancy Guthrie has put together this helpful collection of short readings exploring the question of suffering.
This anthology includes essays from both classic and contemporary theologians, Bible teachers, and missionaries such as John Calvin, Charles Spurgeon, Dietrich Bonhoeffer, John Piper, Corrie ten Boom, Joni Eareckson Tada, and Helen Roseveare. Each entry expounds on a Bible verse, leading readers to see and be comforted by God’s perspective, purpose, and provision in suffering.”
75 Online Resources on Disability and Special Needs on David Murray’s blog Head Heart Hand
There are so many links here to personal stories, articles and videos considering disabilities and special needs from a Christian perspective. I particularly appreciate the several series of posts written by parents about life raising children with special needs.
Defiant Birth: The Women Who Resist Medical Eugenics by Melinda Tankard Reist
“Daring women—those who were told not to have their babies due to perceived disabilities in themselves or their unborn children—tell their stories in this controversial book that looks critically at medical eugenics as a contemporary form of social engineering. Believing that all life is valuable and that some are not more worthy of it than others, these women have given birth in the face of disapproval and hostility, defied both the creed of perfection and accepted medical wisdom, and given the issue of abortion a complexity beyond the simplistic pro-life/pro-choice dichotomy. As it questions the accuracy of screening procedures, the definition of a worthwhile life, and the responsibility for determining the value of an imperfect life, this book trenchantly brings to light many issues that for years have been marginalised by the mainstream media and restricted to disability activism.”
I hope they stimulate your conversations and thinking on these important and very personal areas of life.
Give thanks for …
- The first two months of Hannah’s life
- Our enjoyment having Hannah at home, seeing her grow and develop
- Opportunities to meet other families in our local community – particularly through the mothers group I have joined
Please pray for …
- Preparation for Hannah’s next operation
- Hannah’s continued growth and development
- That we would trust God and his sovereignty over our and Hannah’s lives despite the uncertainty we face
Your word, Lord, is eternal;
it stands firm in the heavens.
Your faithfulness continues through all generations;
you established the earth, and it endures. Psalm 119:89-90