Rhonel van Loggerenberg
Industrial Psychologist working as a Life and Business Coach
Age of parents:
Juneldè Mignon van Loggerenberg
Age: 9 years
Is this your only child? Yes, a boy age 4. Juvan is his name.
Diagnosis of child: Hypoxic Anoxic brain injury due to Near Drowning at the Age of 3 (13th January 2013). Now Spastic Quadriplegic Non-verbal Cerebral Palsy with Lennox Gestaut Syndrome Epilepsy. So many big medical words that totally overwhelm me. Mainly Juneldè has been diagnosed with Pseudo Locked-In Syndrome where she very much have the input of her world and cognitive ability to understand however cannot express or act in this world by means of her body, emotions or verbal communication.
What are the biggest challenges facing your child on a daily basis?
I would say pain is a big obstacle for her. She experiences pain due to severe spasticity as well as the dislocation of both of her hips. She is also very frustrated with not being able to talk or interact and would move her mouth as if in response to communication, however no sound is produced. She can cry and does have a lot of different types of cries to tell her carers what she might need, one of these cries is clear frustration. We have recently implanted the Lioresal/Baclofen pump and hope that this will assist in the management of the spasticity. The seizures are also a big challenge as someone needs to actively observe Juneldè every moment of every day since she tends to stop breathing and/or aspirates during these episodes.
What are the happiest moments you have with your child on a daily basis?
To play with her hair and style it. She has beautiful hair and I am often reminded of how all this hair has been shaven of in ICU after the drowning and what a privilege and miracle it is to still have her with us and to see her grow and develop. I love her smell and probably irritate her when I put my nose to her neck and smell her unique Juneldè-ness. Also I am happiest when I see the bond between her and her brother. Their love and connection is so pure and without any judgement or expectation. They teach me to just BE.
Are you a single parent or married? Married
Has your special needs child had an effect on your marriage?
You cannot go through something so traumatic and not be completely changed. As individuals we have changed independently but also very much so in our relationship. Mostly these changes were for the better, we are less selfish and we don’t sweat the small stuff. We have learned to communicate our needs and to trust each other with our deepest hurt and grief. We have early on decided that so much loss have been completely out of our control that we will therefore not allow more loss to come as a result. This choice made us prioritise each other and be gentle and kind towards one another’s weaknesses. We make sure to go on date nights and weekends alone, and always feel so guilty when doing this, however it is during these times that we are reminded that we are not only a team, but also a unit, stronger together.
What has your child taught you about yourself, both positively and negatively?
I have learned that I am strong, capable and wise but also broken, weak and emotional (probably in the same day if not at the same time). I have learned the difference between selfishness and selfcare, and allow myself to practice selfcare on my terms in my own way. I have learned to trust my Mother-gut above all else and to be confident to action on these gut-feelings. I have moved my focus from material gains, worldly competition and stresses to eternal value, spiritual development, mindfulness and gratefulness. I have learned that grieve and joy, loss and gratefulness can co-exist and that this grief I carry is a part of what makes me better. I have learned that the quality of a life isn’t measured by the abilities of a person but by the love that surrounds them and the sacredness of their soul.
Are your family and friends supportive?
Yes, we have parents willing to step in and take over the household in order for us to go on breaks and dates. We have friends lifting our arms when we are weary and being our prayer worriers. We have a wonderful supportive church community who never grows tired of our challenges. We have friends and donators contributing monthly to assist financially. And we have my mom who makes all of Juneldè’s special, organic pureed food and my mother-in-law knitting and crocheting gorgeous socks for Juneldè’s feet (shoes doesn’t fit due to contractures).
What has made the biggest difference to your child’s quality of life?
To be at home with us and to be part of the family structure. To partake in outings and holidays, even when it is difficult and complicated to organise travel and accommodation that caters for her disabilities. We have also found a physical rehabilitation program called BDA that we do daily with her and this drastically improved and keeps on improving her physical wellbeing. We prioritise good supplements and organic food, this focus on nutrition and integrative health keeps Juneldè healthy. The healthier she is the less hospital visits we make and the more her quality of life improves. As she is getting bigger equipment such as a specialised chair, electrical bath seat, electrical hospital bed and pressure relieve mattress also adds to her comfort and wellbeing.
What is your dream for your child?
My hope and faith is complete healing. I also pray that she will always know how much she is loved and that she will know that eventhough we make mistakes as her parents that we pray about all our decisions and that we are so proud to be her mom and dad. Most of all I dream of spiritual growth and a strong connection and relationship with God through Jesus.