Abigail Brauteseth was born with spina bifida and hydrocephaly. This is part two of her inspiring story. You can read part one here.
What progress has Abby made over the last few years?
Abby has progressed in many areas and through the grace of God, has pushed through many limitations. She has developed from dragging herself to crawling properly at just over a year of age. At two years she started to pull herself up, later using a granny walker followed by crutches.
Emotionally she has developed into a courageous little girl. My husband often tells her that she is the bravest girl. She has had seven operations, and many days of illness, mostly from urinary infections prior to a bladder operation when she was two years old.
What challenges – physical and medical does she face on a daily basis?
Nerve damage has caused Abby to be paralyzed in her feet and ankles, and certain muscles in the legs and buttock have less nerve supply. As a result her right hip is dislocated. She walks with a gait, relying on her crutches. She longs to be able to balance freely and run and dance like her friends. Despite this God has given her such tenacity that she never stops trying. The nerve damage has also affected her bladder which causes incomplete emptying and incontinence. Without intervention, this can lead to kidney damage. Abigail also has a challenge with her bowel, and needs help to prevent constipation and blockage. Abigail has a slight squint and is longsighted in both eyes, so she wears glasses.
Describe an average day in Abby's life
As soon as Abby wakes in the morning I need to be ready to get her toilet needs out the way. This involves catheterisation and a bowel washout. We always try to keep it fun. She has to sit on the toilet for about ten minutes, so she gets to read or hold her rabbit, or budgies. She helps dress herself and needs to put on her ankle foot orthotic (Afo's) splints, which give the support and protection to her feet for walking.
She is at a lovely school who have embraced her and her disabilities. They feel that it is good for the other girls to grow in their ability to care for others. She attends occupational therapy once a week at school. I fetch Abby at midday and again catheterise her. She gets catheterised 4/5 times a day and when older, will do it herself.
Abby goes to physiotherapy once a week as it is essential for her to learn to use each mu scle to the full, and compensate with other muscles. She is excited to be starting swimming lessons soon as she is passionate about the water.
She takes medicines daily to prevent constipation and urinary infections. Other than these extra bits and bobs, her days are filled with usual five-year old fun, loads of laughter, naughty moments and memories in the making.
Tell us about Abby's personality – what does she enjoy doing?
Abigail has a delightful personality and endears herself to all she meets. She is cheerful, determined and talkative. God added a huge dose of tenacity to her, which often comes across as stubbornness, but has been essential for her progress. Abby loves people, animals, music and swimming.
Have people ever said hurtful or insensitive things about Abby?
Nothing that stands out - I don't hold onto the negative. People having inquiring minds and I don't interpret that as intentional hurt. Children stare and ask questions, but it is an opportunity to help them to understand more and care for the disabled. There have been times when answering questions and repeating her struggles cause sadness as they highlight the realities she faces.
What advice would you give parents who have a baby with a disability?
Completely surrender to Jesus and Father God! Even trying to draw strength from a spouse or other family can not suffice. Don't try to walk the road alone, this is a time you need friends and need to be vulnerable. Being part of a close church family has been incredible. This is a journey that when your faith is low, you need others to hold up your arms with their faith.
Never forget that although your baby may be different to others, he or she is a gift from God. Keep encouraging yourself in God, focusing on the good and not being consumed with the difficulties. Take one day at a time. Always keep Christ in the picture, His presence, peace and sovereign power, while taking on each day's medical, physical and emotional reality. I have chosen to live my life for Jesus, not to live for the day I see Abby healed.
How has Abby's story touched lives?
Many people are drawn by her charisma and marvel at her courage and cheerful determination. Countless people have commented over the years at how Abigail has encouraged them to persevere. One Lady's comment when facing surgery was, "I just kept thinking of Abby and that if she could go through it then so could I." Others have seen her determination as she faces many challenges, and realize their own issues are not that bad.
She has helped soften many hearts towards those with disabilities. People look at Abby and see the outworking of a loving God in her life, in spite of her disabilities. This is a story where God must get all the glory. Only God's grace has been sufficient for us, and for Abigail. He has strengthened us, and enabled us when we have needed it most.