Raising a child with disability
by Hannah and Jon Langley. Jonathan was a member of St Mary’s for many years before moving to the South of England. On this page we link to their own website ‘Perfect in Weakness’.
Their website tells the story of the birth and life of Mim Langley, and how God has been at work in their lives. Mim is a lovely little girl with a lot of problems but no overall diagnosis yet, although it is suspected she has a rare genetic condition.
From the introduction they write, ‘Before Mim was born, we were expecting a happy healthy baby. My pregnancy had been straightforward and healthy as far as I knew, and there was no reason to suspect anything was wrong. On 25th February 2013 I went into labour, but on admission to the hospital it evolved I had a raised temperature and the baby was breech. This quickly escalated to the conclusion that I needed an emergency c-section.’
‘When the baby was delivered, it was immediately clear that she was ‘meconium aspirate’ (she had passed meconium in the womb and then inhaled it) and was having trouble breathing. A doctor calmly explained to us that the baby would need to be checked over and given some oxygen, and needed to be transferred to Special Care.’
‘It was hours before I was allowed to see Mim again, in her little incubator with wires all over her. Even then, surrounded by dangerously ill babies in a room of beeping monitors and life-saving equipment, I don’t think we understood the gravity of the situation. The doctors said Mim had an infection and needed antibiotics and oxygen, but they were hopeful she would be well enough to come home within a few days. Days became weeks as Mim suffered episodes of struggling to breathe and turning blue, and unable to feed well enough without support from a feeding tube.’
At the time of writing, we still have no diagnosis for Mim’s problems. The general opinion seems to be that she has a genetic condition which is yet to be diagnosed, and we are chasing the genetics department to get more tests done. Mim receives all her nutrition through a tube into her stomach and is still vomiting a lot, but we are hopeful that one day she might be able to eat normal food like a normal child. Indeed we live in hope that one day Mim might be able to sit, walk and play like her peers, although we don’t know what her future looks like. We trust that God has a plan for her and for us, and that her struggles are not hopeless or pointless.
Further into the website they write,
'Whilst our little girl is beautiful and precious despite her problems, our website title ‘Perfect in Weakness’ is not a reference to her. Instead it refers to God’s assurance to Paul in 2 Corinthians, that
‘My grace is sufficient for you, for my power is made perfect in weakness’. It is our hope and prayer that this would be true for us too, that God’s grace would be exemplified in our time of struggling and weakness.’
Hannah writes, 'It is this promise that gives me hope – God’s power is made perfect in weakness. In our weakness and our struggles, when I feel totally overwhelmed and unable to cope, God’s power is at work. More than that, it is in these circumstances that God’s power is made perfect, exemplified and fulfilled.’