Parenting children with additional needs

Parenting any child is a steep learning curve, but parenting children with additional needs can feel more like a rollercoaster ride, surprising you with twists, turns, highs and lows. Fifteen years into my journey hasn’t made me an expert, but I hope that by sharing my story you can be encouraged to remember that God is in control, and you are not alone on whatever rollercoaster you face.

Before I became a mum, I was a paediatric nurse working on a busy medical ward. I knew my nursing was a gift that God had given me to serve him. I was excited to see what the future would bring. Little did I know, God was going to use my nursing skills to help me care for our two wonderful children.  

The early challenges of motherhood

Our son was diagnosed with a complex congenital heart disorder at my 20-week scan. The shock of finding out he was poorly before he’d even been born sent ripples of grief throughout our extended family. Psalm 139 became a precious passage to us as we tried to come to terms with this news. We held on to the fact that, even in the womb, God was in control. He did not make a mistake and our son is fearfully and wonderfully made. Every single day of my son’s life, long or short, is known by God. This is not always an easy truth to accept, but God regularly uses songs and devotionals to remind me that he is in control. 

The shock of finding out our son was poorly before he’d even been born sent ripples of grief throughout our extended family

Our son has faced three open-heart surgeries and other minor procedures. His first year of life was spent in and out of hospital. Due to complications, the list of his diagnoses has grown longer. He suffered a stroke, which resulted in cerebral palsy down the right side of his body. He also struggles with anxiety and PTSD from the trauma of all the medical intervention he has had at a young age. 

When he was two years old his little sister was born. My pregnancy had been closely monitored and had shown that her heart was healthy. When she was three weeks old, we had a call from the GP asking us to bring her in. The poor GP locum had been left with the job of telling us that our daughter has cystic fibrosis, a life-limiting genetic disease that affects the whole body but, most significantly, the lungs. As the GP tried to explain the next steps, I sat sobbing and remember asking: “How are we going to manage? I can’t split myself in two if they need to be in hospital at the same time!” 

Even in that dark moment we could see God looking after us and providing for us. On the ward I worked on I had been caring for children with cystic fibrosis. Some of this experience wasn’t helpful as I knew how horrible the condition was, but mostly it has been a blessing to have the skills to care for our daughter. Her road has not been an easy one. Each year the burden of treatment increased from physio and medicines to nebulisers and then regular IV treatment. My nursing has allowed us to do the majority of this treatment at home and for us to have as normal a family life as is possible.     

Utilising support

I have always struggled with feeling unable to fit in all the different things each of my children needs. If I did all the therapy and treatment that each professional wanted me to do, then I wouldn’t be able to fit in anything else. It is important for our family to have time to do the fun things in life as well.

God has placed an amazing support team around us who have stepped up when we need that extra bit of help. Our church family has provided us with countless meals and cakes. Grandparents provide us with regular respite care to allow us time away to invest in our marriage. This has been so important as the divorce rates in families with children with additional needs are reported to be as high as 87 per cent. By God’s grace we have been able to keep communicating and working well together as a couple. 

The most amazing thing is the prayer support we have. There have been so many times when things have felt too overwhelming for me to know how to even start praying. In those moments I know others are praying on our behalf. 

Recognising the changing needs

As the children get older the parenting challenges change. They are becoming more independent and learning to manage their own medications and treatments. Teenage hormones and wildly swinging emotions are a frequent battle. Our son can get very anxious, and his need to be in control has resulted in some very tricky moments with his behaviour. 

Making sure that our children have the best support in their education and financially has meant lots of form filling. The forms are often very long and the experience depressing, as you answer question after question about the things your child can’t do or struggles with. Some days all this can feel overwhelming, but many times God has used a song or Bible reading to remind me to trust him. 

The bigger picture

I have been a mum for 15 years and I can see God using our family’s experience for his glory. I have learned to hold on to him in the darkest moments knowing that he will make it all work for his good. I have had to recognise that he is in control as I have handed my children over to surgeons and doctors, trusting that God is there with them. 

My experience has allowed me the privilege of supporting others who are parenting children with additional needs. My story is not the same as anyone else’s, but having walked the journey with my children I am able to come alongside other families. I couldn’t have connected with this community in the same way if my children hadn’t had any additional needs. I help run a support group from our church for families of children with additional needs and try to show God’s love and compassion to a group of people that can often be very isolated and hidden. 

My nursing has allowed us to have as normal a family life as is possible

One of my favourite passages is 2 Corinthians 1:3–4: “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”   

God has comforted me with his love and faithfulness on every step of my journey so far as a mum. I recognise that that comfort is not just for me, but I am to pass it on to those in any trouble who need comfort. Knowing God is in control has helped me to keep holding on to him and holding on to hope.  

Cheryl Wilding is a wife, mother, paediatric nurse and writer. She enjoys sharing her stories of God’s goodness to her family in her blog, 

chezwild.livejournal.com