I have been feeling particularly sorry for myself lately. Life is a little challenging for one of my children, which finishes me. It is really hard to see your child struggle with certain issues. Not for yourself, but for your child. As a parent, your heart aches for your child. For their today, and for their tomorrow. No parent wants their child to struggle any more than they have to, life is hard enough as it is without having to deal with additional challenges that aren’t easily or quickly resolved.
And then recently I got a giant dose of perspective. A massive big slap on the side of the head that made me realize that our ‘challenges’ are nothing in comparison to what so many other face. That we have so much to be grateful for.
We have a new domestic worker at home. Her name is Happiness and she brings us much happiness. Happiness is quite shy and doesn’t talk much. Jayde asked her last week why she wasn’t eating anything and Happiness told her that she was fasting for three days. Apparently Happiness and the members of her church were fasting for her 18 month old son Lwando, who is unable to walk.
Aside: As I have mentioned before, there are two health care systems in South Africa. One that is free, sponsored by the Government. The other is the private healthcare system for those who can afford it. While both healthcare systems are staffed by incredibly competent, skilled medical professionals, they are two completely different worlds. I am generalizing here, but in general the government healthcare system is severely overloaded and in some cases tragically under-resourced. The private healthcare system is world class in terms of service etc. When I go to the doctor, I have an appointment (which I can get within a day or so, hardly any waiting), I sit in a plush waiting room and I get treated with five star service. When Happiness goes to the doctor, she has to be in the waiting room by 8am. There are no appointments. It doesn’t matter if you are supposed to be at work, you have to sit there and wait. You all sit in a waiting room that is the opposite of plush. You could wait there all day sometimes. The staff there work extremely hard, it is very difficult for them to give 5 star service to the 100s of patients that line the waiting room.
Happiness had taken Lwando to be assessed by the doctors at the government hospital because he wasn’t achieving any milestones. At 14 months he was unable to sit, and certainly unable to stand. He was also very small. At 18 months he weighs 7,4 kgs (16 pounds). The size of a 6 month old baby.
I asked Happiness what the doctors said the issue was with her son, but she said she didn’t know. She wasn’t sure what the doctors had said, they hadn’t told her much. They gave her a whole lot of letters (referral letters) and told her to take him to see other doctors and professionals. She said she asked the doctor whether her son would ever walk, and the doctor shrugged and said “maybe”. And so she fasted. And prayed. And hoped. And had no idea what was going on
I asked Happiness to bring the letters to me to read so I could perhaps see what I could make out from the letters. The letters were unopened, unread. I opened them and what I read made my heart sink: “Evolving spastic and dystonic cerebral palsy affecting all four limbs (quad) due to perinatal asphyxia, Pulmonary Hypoplasia, congenital diaphragmatic hernia (repaired after birth), global development delays”.
Oh no! My heart broke for Happiness and Lwando. I read up like mad on the diagnoses and emailed the CP support groups in SA for more information. I downloaded various booklets in Xhosa and then I steeled myself to have the conversation with Happiness. I said to her “Happiness, I am going to tell you what I understand from these letters. It is not going to be easy to hear but I am going to tell you what I believe the truth is, because there is no other way to say it”. And she said “yes please, please tell me the truth. No one is telling me what is going on”.
And so I told her, in as simple a way as I understood the truth to be, about CP and about how it might affect her and her son. I explained about brain damage. I explained to her the difference between an OT and a PT and why it was so important for her to take him to the sessions. I explained about feeding, about wheel chairs, about support.
And she thanked me afterwards (which made me feel terrible :( ), she said she was just so glad that someone was open with her. She said that everyone was berating her for not having enough faith. That he WOULD walk one day if she just prayed more / fasted more etc. I said that we don’t know whether he will or wont walk, but it had nothing to do with whether she was ‘faithful’ enough, and that the best thing for him would be for him to get as much help as he can right now.
And then I checked the rest of her hospital letters and read that Lwando had a MRI booked for two days’ time, thank goodness I checked. Happiness knew nothing about it. I phoned the hospital and they said that Happiness had to admit her son the next day and then stay overnight with him so that the child was nil per mouth the next morning. Happiness told me that there are no beds for the moms to stay overnight. They all have to sleep on the ground or a plastic chair.
(Unfortunately Lwando got ill the night before the MRI and so was not healthy enough to undergo sedation. She has to wait until 4pm the next day to get medication for him. She had to wait around the WHOLE day just to get the meds. The MRI has been postponed to January)
Happiness has only been working for me for two months, she was working only a few days a week before then, when she was able to get work. I know times were very tough for her. She said that she was scared to ask for time off previously to take him to the doctor or therapy because she was scared to lose her job. I told her that she HAS to take him to therapy / the doctor and if it meant she has to take time off each week, then so be it. She will not lose her job because of it, certainly not from me.
It made me so sad. Not just because of the little boy’s diagnosis, but it was a stark reminder how little so many South Africans have. And how the legacy of poverty is so hard to escape. The lack of education, of information. The access to care, to knowledge. That someone needs a job so badly that she would be too scared to ask for time off to take her child to the doctor. And yet, this is the reality for so many people. Therapy can seem like a luxury when you have no food for your children. And here I am, taking my child to OT and speech and all the other therapies without even realizing how fortunate I am that I am (a) able to afford it and (b) have the luxury of time to be able to take my child. As a mother, my heart aches for her.
I am going to do what I can to help Happiness and Lwando. There are things I am doing already (like paying her as well as I can, and giving her all the time off she needs), I have donated a whole lot of furniture to her as well, but I would like to do more. Help her with knowledge and also with practical things. I have already gathered as much information as I can from the internet. She is Xhosa speaking and her English is limited.
If anyone has any advice or contacts for us to help her to help her child, please let me know. If there are support groups (especially Xhosa speaking support!) we would love to know about it.
Those who have experience with CP, what is the most important thing she needs to know right now? Any suggestions re exercises, treatment, feeding etc. Lwando is 18m now.
Then on a practical level, I would like to do for her now is get a pram / stroller for her son so that they can take him out (she doesn’t have one as she couldn’t afford it previously) and eventually I would like to get a wheelchair for her child once he is older.
Are there any other things that she could use to make it easier for her and for him? Any equipment / aids / seating things?
If anyone has a pram / stroller to donate to Happiness, we would be eternally grateful. I think it would make life a lot easier for both of them if she could take him out in a pram. **Updated - we have a pram, thank you so much to the kind soul who donated one to Happiness and Lwando**
And any other donations of gently used clothes for a little boy would be great. Or anything else that might help her. As I mentioned, he is only 7.4kgs, so I guess he would fit into age 6-12 month or 12 – 18 month clothes. I had unfortunately donated all Max’s stuff before Happiness joined us.
My heart aches for Happiness and Lwando. Happiness and Lwando could have been Ben and I in another world, in another lifetime. If Ben had lived, he would very likely have had some sort of CP as well, as he had a fairly significant brain bleed. I can’t help thinking that this could have been me, and that somehow it is part of my destiny that I have to help Happiness help her son. Because I would hope that if Ben had lived and had a disability, someone would have reached out to help us, especially if we didn’t have very many resources ourselves.