Happiness has a very nice son

Yesterday we dropped Happiness and Lwando off at the taxi rank after work and as she is getting out the car Max says to her "Happiness, I must just say, you have a very nice son".  Hearing yourself in your six year's voice is very funny/weird.  But Max is right, Happiness does have a very nice son. 

Lwando has come to visit us for the past few days as his usual care giver (his granny) is away at the moment and Happiness has no one else to look after him.  Finding someone who is willing and able to take care of Lwando while Happiness is at work is actually quite a big problem and one that we are not sure how to solve.  The problem is that he needs specialize care.  At the moment, only Happiness and her mother are able to feed him.  Because of his cerebral palsy, he is unable to easily swallow.  Which means he doesn't want to eat so you need to be both gentle and firm to get him to eat.  You need patience and kindness.  On the rare occasion someone else has taken care of Lwando during the day, Happiness comes home to find Lwando starving because the person couldn't / wouldn't get him to eat.  Finding someone to take care of Lwando for next year or the year thereafter is a big problem. Happiness's mom is getting old, she wants to move to the Eastern Cape to retire.  She hasn't been well this past year.  Happiness says that in the area she lives there is a lot of alcohol abuse, so to find someone who is both willing and capable (and sober!) to look after her son is a huge problem.  There aren't any special needs schools in her area.  I am feeling quite desperate for her actually.  To be poor, and uneducated, and unsupported (Lwando's father does not support Happiness at all, not emotionally, practically or financially) and the mother of a special needs child is such a huge challenge.  It's a massive dose of perspective witnessing her struggle.  You / we think we have problems.... :(

I have to say, I got a bit of a fright when I saw Lwando this time.  He is a gorgeous, beautiful boy and so friendly and happy, but he is more disabled than I realized.  As he gets older, his disabilities become more obvious.  All four of his limbs are affected.  He is a tiny, tiny little thing.  Like a bird. 

What a beautiful boy!

Having Happiness and Lwando come into my life has made me realize like never before the absolute privilege that money / resources gives you.  And how the lack of it is so severely limiting.  When my child is sick, I whatsapp my wonderful paediatrician and arrange an appointment for that morning. I bundle my child in my car, drive 5 minutes to his rooms, wait for 5 minutes in the waiting room, get expert advice, get whatever medicine I need and off I go home again. If I don't understand something, I can ask or I can google it. I can see specialists, therapists etc when it suits me.  My privileged position means that I am able to access all these services because I can afford it. The difference between public and private healthcare in South Africa is so stark.  Happiness has to see if she has money for the taxi to get to the government hospital, where she has to sit in the waiting room all day, shifting from one chair to another in the queue, missing a day of work.  Or she has to go to the local clinic where if she is lucky she gets seen by midday, but sometimes is turned away.  Luckily she is able to access free healthcare through the government hospital and clinic network, but it is an extremely arduous process. The staff are over-worked, over-stretched and on a limited budget. The facilities are less than ideal.  The doctors in the government hospital network are very skilled, but they are so stretched.  The nurses even more so.  There isn't always the time and patience to explain things in a way that an anxious, unsure mom might understand.  Happiness asked me if I thought he would get better one day, it was such a hard question.  The truth is although he might get more competent, he will most likely never be able to live independently.  Lwando has spastic and dystonic quadriplegia due to cerebral palsy.  This was the result of the MRI he had done earlier in the year.

 

I do what I can of course.  I phone the hospital or email the doctor to try to help Happiness understand the information she has been given.  I give her time off work to go to the hospital or take him to physio.  I pay her the best salary I can afford. But at the end of the day, she is his mother.  She is the one that has to care for him for the rest of his life.  She has limited skills, limited resources, limited access to care and absolutely no support.  It's a huge deal. The future looms large and quite scary.  

But focusing on today, the most important thing for the next few years is to find good day care facilities for Lwando so that Happiness can carry on working to support her family (she has another son who is 13).  There must be a school or a day care or a stay-at-home person that can take care of him during the day. As a non-verbal disabled child he is so much more vulnerable to potential abuse or neglect, which is why I feel so strongly about him being cared for properly during the day.  As you know, I started a fund raiser for Lwando so that we can support him by buying him a wheel chair when he is older, but I would like to extend that to get financial support to pay for schooling for him.  If anyone has any ideas about who / where could take care of him during the day, I would love to hear.  Remember that Happiness relies on public transport to get around so we need a solution close to Durbanville.  

For those who want to help in other ways, Lwando's Go Fund Me page is still up: https://www.gofundme.com/ekkoro 

Previous blog post: http://www.tertia.org/so_close/2014/09/happiness-and-lwando.html 

 

Comments

[Karen]

I live in the United states and it is very common here for nannies to bring their children to work with them. My nanny brings her son with her and it results in a very happy nanny, a happy me, and happy children of both my nanny and me who have gained friendship and compassion in spades. Since it has worked so well for these few days and Max likes him, I suggest you give this American practice a try!

[JustMe]

I am an occupational therapist with additional training in swallowing. From what you are describing Lwando probably should be assessed for a feeding tube (g-tube, gastro-enteral tube) that he could receive liquid feedings through. If he is swallowing safely (determined by a swallow study) then he could continue eating orally when feasible but it would not have to be such a huge part of the day and might make finding a caregiver easier.

I know with the health systems this may be difficult but it really might help him greatly. I suspect swallowing is an issue anyway and if that is true eating (at a minimum certain foods) may be dangerous for him as it can go to the lungs and cause pneumonia.

I wish I could scoop Happiness and Lwando up and take them to the hospital where I go where nobody is turned away for inability to pay, yet it is one of the top hospitals in the world.

[Joanna]

What Karen said! Of course I don't know what her responsibilities are in your home but since your kids are older it seems feasible. It's a very common arrangement in the states because nannies and childcare are so expensive - even though people who work in childcare are low paid its still a huge cost for one family. There's no way a nanny would be able to afford daycare for her own child - it would eat up her whole salary.