Karen Louber shares the affects of ANE on her family
and the rehabilitation therapies that they use.
Herman Jozua Loubser. Born prematurely on the 8th of June 2015. He started life as a frail little boy, but soon proved himself to be a fighter. Little did we know that not only this little boy, but his whole family would need to rely on that fighting spirit, eight months later.
On 9 February 2016 Herman’s life changed forever. Our little happy chappy’s life changed in a few hours from a very healthy boy (who could sit by himself and who run around in his walking ring, chasing his sister) to a totally dependent one. ANE attacked its next victim.
As this is a page on ANE, there is no need for me to go into the particulars of the condition. What I want to do is describe the way Herman copes today and how his disability affected his family and the way they live. This is from my perspective as his grandmother.
Mostly we are filled with hope. Mostly we feel there is a reason to carry on with all the medication, therapy, research and day to day exercises. When we look at the Father’s grace and His mercy in dealing with us and Herman and the way He helps us to cope through days of hospitalisation or difficult days. The way He uses little things like Herman’s laughter, or a new word he recognises to show us progress. Showing Herman’s interaction with people around him in such a precious way. The days when he stays in the standing frame longer than usual. Days when he reaches for something and actually manages to grab and hold a toy or spoon. Days when I, as his Grandma realizes that he remembers me, even if he did not see me for a few weeks. And when I hold him in my arms and hear his voice, even if it is just little sounds of affection he sometimes makes when I softly tell him of my love. As a grandparent going through this scenario, I also felt different stages of emotion but mostly I feel a kind of helplessness and it took me a long time to deal with the feelings of grief. A kind of acceptance of a pain that is for ever engraved unto my heart. Sometimes I wish I could change the pain in my daughter in law’s eyes and just replace it with pure joy. The positive side to all of this is that I saw both parents developing empathy towards the disabled and less fortunate in life. A deep understanding of the needs of others going through the same situation. Making them people of substance.
Parents must also deal with the psychiatric influence that the situation have on the other siblings. This is indeed a complex situation. Grandparents can only give a certain amount of love. Herman has a very loving spontaneous sister that cares a lot about him and who is very understanding towards him. She had to deal with a lot of emotions especially now as she grow up she have to answer the questions of the other kids about her brother that cannot walk and talk and is still wearing diapers. Annaline is trying to expose Elri’s friends to Herman as much as possible so that he can also fall under a “normal spectrum kid” for them. That they could see him as part of Elri’s family and not something strange that could ruin their friendship.
As the days, months and later, years passed we also realized that raising a special needs child and giving him the best chance of survival and growth, costs a lot of money. Especially after Herman got regular epilepsy last year and the year before. The last one being a massive ninety-minute attack that almost took his life and left him in hospital for thirty-four days. You can imagine the costs of daily medication.
In South-Africa there is no special tariff on the medical expenses of the disabled. The only advantage of having a disabled child is the small percentage you can claim on your tax return. As for the permanent use of nappies, the day to day care and medical expense in the form of therapy, medicine or hospitalisation, there is no discount. I also realized that apparatus for the disabled costs ridiculous prices. Even a car seat, or a bath aid that does not differ a lot from that of a normal child costs thousands. It is as if the needs of the disabled is seen as a way to make money instead.
I was walking through their house a few weeks ago and whilst being thankful that through donations and wise use of their income they could supply Herman with most of the equipment he needs, it is still tragic that a little boy of three needs all of these things to be able to develop. Still, they are more fortunate that lots of other parents with disabled children, in that so far it was possible for them to get Herman most of what he needed.
When my daughter in law first let us know that the baby she was expecting was a boy we were over the moon with joy. We could not help but think of the satisfaction it would bring our son to have a child that could carry on his name and do the things with him that every father dreams of doing with his son.
After that unfortunate day when Herman’s body when into a septic shock and doctors asked their permission to turn of the machines if necessary, we saw our son go through different stages of heartbreak and grief. Days of frustration and worry. Many a time he expressed his love for his wife and how he wanted to support her and take away her burden but knows that he will never be able to change the circumstance of their new life.
A dad thinks of buying his son a bicycle or a skate board. He thinks of teaching him to farm. (In Herman’s case.) He imagines himself going camping and fishing with his son. Now he had to plan for a vehicle that would be able to accommodate his son’s wheelchair and have enough space for Herman’s legs when he sits strapped in into his car seat. Instead of buying him his first bicycle, he has to buy expensive equipment to help his son gain a better use of is body.
Herman outgrew his buggy and will soon need a bigger one.
This is a bathing apparatus that assists in keeping Herman in the water like a chair, but curving in such a way that he is able to lie in the bathwater by himself or freeing his parent’s hands to wash him or shower him. His parents enlarged the shower in their home so that it can be wheelchair friendly. Now this bath seat also fits.
The oxygen tank is an absolute necessity, because they stay far from the major hospitals. Herman needs oxygen every time he has a seizure. After his last attack they had to drive 150 km without oxygen because the local hospital could not supply an ambulance or a portable oxygen tank. He almost died. A 90-minute seizure takes its toll.
1. Auditory exercises
2. Feeling – oral and body pressure points
3. Olfactory – smells – help with the
development of memories and smell –
limbic system and amygdala – responsible
for emotions.
4. Reflex bag – To develop his lungs. He does
not get normal exercise like other children
and needs to practice to help his lungs
develop.
5. Inclined Floor – teaching him to crawl
6. Jacuzzi – hydro therapy
7. Hyperbarics
8. Reflex massaging.
Between all of these, Herman still needs to have nap time and have his meals and drinks as well as medication at regular times during his day. This takes a lot of care and discipline for his caretakers in the form of his parents and nanny. It is difficult to get a full time nanny for long periods because they live in a small town where professional help is rare and it takes a special kind of person to help with a disabled person. This puts a lot of strain on Mommy and as she needs to pick him up most of the time, it has a negative effect on her back. I think all parents of disabled children can relate.
As for me, and the rest of the family, we try to support with love and emotional support as much as we can. This is only a part of Herman’s story. This is his now. We trust and stay positive that he will be able to develop further and that as time goes by and new challenges arise, his parents will find the way to deal with it. I thank God that he saved Herman. That we can have the privilege of knowing him and sharing our life with him. I think he is just awesome.
We feel empathy for all other ANE families out there and thank you for allowing us to share a little bit of how Herman is doing at the moment. He is a CP warrior like many others. He is my hero.
