Ryan and Veronica Nel
Car Spares Salesman
Age of parents:
42 and 37
Age: 4.5 years old
Is this your only child? Matthew is our first child.
Diagnosis of child: Holoprosencephaly (HPE) - a cephalic disorder in which the prosencephalon (the forebrain) fails to develop into two hemispheres during fetal development. Microcephaly - small head. These result in various issues such as epilepsy, endocrine abnormalities, motor dysfunction, craniofacial malformations, oromotor dysfunction, severe development delays and mental dysfunction etc
What are the biggest challenges facing your child on a daily basis?
Matthew requires 24/7 care. The care is specialised. This makes it very difficult to find someone other than ourselves who would be able to take care of him should there be an emergency or even just for a bit of respite.
What are the happiest moments you have with your child on a daily basis?
We have seen what we believe to be a smile from Matthew, on the rare occassion, but we have come to appreciate smaller things, like a yawn (Matthew's yawn is almost equal to the old chop add yawn!) and a sigh (Matthew's sigh speaks a thousand words and means all is well in his little world!)
Are you a single parent or married? Married.
Has your special needs child had an effect on your marriage?
Absolutely. We have seen the worst in each other and often felt like giving up. It took a while, and still takes effort, to accept that we are each dealing with this "crazy life" in our own way and that we cannot expect the other to deal with it in the same way and that it also does not mean that we don't love each other if we don't deal with it in the same way. We have also witnessed each other's strength, courage and bravery. Facing something like special needs parenting together means that we have found a buddy in battle in each other - we totally have each others back!
What has your child taught you about yourself, both positively and negatively?
Positively - Matthew has given us a profoundly different perspective on life, we are forever changed and are greatful for that, we would never want to go back to the way we saw life before Matthew joined our journey. Negatively - We have been stretched by matthew's need beyond anything we've known, at times we want to be selfish.
Are your family and friends supportive?
Yes. But we have often isolated ourselves and unintentionally pushed our friends and family away. They want to help but don't know how. And we need help but don't feel comfortable to ask. It takes courage on both ends to meet each other half way. And when that happens, both sides are blessed beyond measure. We have had to learn that in accepting a gift, we are allowing someone to be blessed with the opportunity to give. Receiving is still not easy for us though!
Do you take time out, if so what do you do to relax?
Ryan likes to hike and get out in nature to recharge.
Veronica doesn't like going out but a few extra hours of sleep does wonders!
What has made the biggest difference to your child’s quality of life?
Simplifying our lives. We moved from a huge three bedroom house into our double garage converted into an MICU "Matthew's Intensive Care Unit" and we plan on simplifying our lives even further by moving into a caravan. By doing this, we have more time to focus on what is really important - choosing hope and happiness over stuff and space - which means we can focus more on Matthew's care and needs to give him the best quality of life we possibly can.
What is your dream for your child?
For him to accomplish the purpose that God has sent him for. He changes more lives without speaking a word than we ever could with the most eloquent of speech. He touches more hearts without moving a limb, than we ever could with the most bountiful abilities.