How Talia’s Disabled Daughter Taught Her about the Love of God

By: Stephen McAlpine

I have devoted this guest post to a friend of mine, Talia. I have not read anything as moving, as heartbreaking, or as soul-enriching this year.

This is her account of how her fourth child with her husband Dave, has deepened her understanding of God, even – and especially in the midst of deep pain.

I hope this story refreshes and restores your trust in our heavenly Father as much as it did mine.

Here is Talia story about Georgia …

I am not a writer. I don’t blog, I don’t journal, and I very rarely write anything personal up on social media. But given the season, I thought it was a good time to share a few things I’ve learnt recently. Please note, I am not a theologian – these are merely my reflections.

My daughter, Georgia, is 10 months old. She is my fourth child. I had a very normal pregnancy – morning sickness for the first trimester, a smooth second and felt like an elephant for the third. All the scans and measurements were normal. Her birth was much like my first – quicker than expected and catching the midwives by surprise. She even looked like her eldest sister when she was born. She was quiet and sweet, fed well and slept a lot. I went home four hours later and marvelled at the blessing it was to have a settled and peaceful fourth child.

Things changed dramatically two days later. My husband Dave was using his paternity leave to tidy up the front yard, mowing the lawn and pruning branches. It was business as usual at our place – four kids will be easy!

But when the midwife came for a prearranged home visit, what she told us would change everything. After her first weigh in since leaving hospital, we realised Georgia had lost 20% of her body weight – way over the acceptable threshold. On close inspection she had become floppy and pale – again outside of expectations for newborns and indicating that she was deteriorating quickly.

Our midwife strongly recommended we present back to hospital via emergency. We arrived and then spent two and a half weeks in the special care nursery. Over the following few months, Georgia had multiple MRIs, CT scans, lumbar punctures, blood tests, genetic tests and finally one scary diagnosis: a rare genetic condition called Aicardi-Goutieres Syndrome (AGS). Named after the doctors that discovered it, AGS is an inflammatory disorder that causes significant neurological damage and most often affects other organs as well.

Most AGS children who have their onset during the in-utero period don’t survive childhood and spend their lives profoundly disabled. It was hard news to have to break to family. Even Georgia’s neurospecialist couldn’t break it to us – the disease being so rare (only around 400 cases in the world) he was only just beginning to get his head around it. We relied heavily on reading scientific journals to get a true picture of her condition.

It’s been a difficult 10 months, from shock, to shame through denial, grief and acceptance. Reflecting now I can see this whole experience has taught me some significant things about God’s love:

1. God loves us regardless of our own abilities and regardless of whether we can give anything back

Anyone who has held his or her newborn has probably experienced this type of love. The overwhelming experience of loving your own child, although they aren’t doing anything, least of all showing their own love back to you. But then your newborn learns how to smile. And smiles at you! And then they gurgle and then they say your name and put their arms up for you to pick them up. Those moments are full of joy and delight. They signify the fact that your child loves you back and wants to be with you.

Georgia is now 10 months old and has not reached a single ‘normal’ milestone. She doesn’t smile, she rarely makes noises (but cries a lot), she hasn’t discovered her hands or feet yet, she hasn’t ‘intentionally’ rolled, can’t sit up – and she may never do these things. Yet, it hasn’t changed the fact that I love her immensely.

Growing up in a Christian home, I’ve always known that God loves me regardless of my own response to him. However, loving Georgia, despite the fact that she doesn’t outwardly display any love back (and may never) – that has given me a deeper understanding of how deep God’s love really is.

This concept led me to a verse from St. Paul in Romans 5:8 – “God shows us his love for us in that while we were still sinners, Christ died for us”. God doesn’t just love us when we are doing good things – he even loved us when we weren’t loving him, when we were rejecting him.

2. God loves us and desires to comfort us even when we push him away

Firstly, I need to state that Georgia does not intentionally push me away. Her condition affects her muscle tone and although she has medication to help, she still often becomes very stiff when all her muscles tense up.

She, understandably, becomes very upset when she is in this state, but also when she is very upset, she becomes very tense. As her mother, all I want to do is pick her up and hold her close so that she can relax and find peace.

But this doesn’t always happen (in fact, we often put her in the most obscure positions to relax her including the most effective position to date – folding her head into her knees). If I try holding her close, she will often keep crying and stiffening her body which essentially feels like she is pushing herself away from me.

How does this relate to the love of God? Jesus tells us a story about a son who ran away from his father – his father who was loving and had always provided him with a safe and secure home. His father waited patiently day in, day out for his son to return (spoiler alert – son returned, and the father embraced him joyfully).

God loves us like that father. He is waiting to embrace us again after we stop pushing him away. As my mother used to sing often, “the steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is thy faithfulness” (Lamentations 3:22-23).

3. God’s presence and love is comfort

Despite what I’ve said above, Georgia hates being left alone and requires to be held every waking moment. Every night I sleep with her in the crook of my arm (sssh, don’t tell the child health nurse!). She often cries until someone picks her up and then settles straight away. Just today, she stopped crying simply because her brother went and lay down next to her.

God’s love is comforting in the same way. We cry out for him and he gives us peace. ‘He comforts us in our affliction’, as St. Paul writes in 2Corinthians.

4. God’s love is self-sacrificial

Any mother who has grown a baby and gone through the birthing process will testify about the sacrifice and hard work they have endured to bring their child into the world. On top of that there are the sleepless nights, the pain of breastfeeding, the loss of or significant change in your social life, family life, work life etc.

While all this has been true of Georgia, it also has included ten months of broken sleep, juggling Georgia’s special needs with appointments, a very involved regiment of medications, complexities with raising three other children who each deserve some attention from mum.

Throw in a husband to love, a house to keep in some respectable manner, it has been exhausting. Leaving the house is complicated by Georgia’s lack of temperature control – she can very easily overheat and then experience days of poor feeding. Consequently, I’ve had to give up much of the ministry I was leading, and the pinnacle of my social life is school drop off and pickups.

All the exercise I had wanted to do has not happened and the books on my bed side table have not been read. Our expectations for the future of our family, and future have had to shift fundamentally. But it has not changed the love I have for her.

In the same way, God loved us enough to go through the sacrifice & suffering. John writes “for God so loved the world that he gave his one and only son…” – He was willing to sacrifice something even more precious than a full night’s sleep- for us.

I’ve gained a deeper appreciation of what sacrifice and love means. I hope that you would consider the extent to which you are known and loved by God – despite your complications and difficulties – God loves you deeply.

Article supplied with thanks to Stephen McAlpine

About the Author: Stephen has been reading, writing and reflecting ever since he can remember. He is the lead pastor of Providence Church Midland, and in his writing dabbles in a number of fields, notably theology and culture. Stephen and his family live in Perth’s eastern suburbs, where his wife Jill runs a clinical psychology practice.

Feature image: Photo by Luma Pimentel on Unsplash.