Our isolation journey so far...
With the outbreak of this pandemic on the world, I have to admit that it has not really affected me negatively. But I think I am the only one in our family that can say that with honesty.
Do not get me wrong, the Corona virus is horrible and what is happening around the world is terrifying.
It is especially terrifying for families like ours who have an intellectually disabled child who is also extremely medically fragile. As most know, Jacques has cvid (commom variable immune deficiency) as well as type 1 diabetes and ehlers danlos vascular type. He is thus extremely immune compromised and the corona virus will most likely kill him.
And that reality has been there for most of his life. The reality that the next pneumonia could be the end of his journey with us. And because that has been a reality in our life for so long, the adjustments we had to make has been minimal.
It is the two of us (Jacques and mommy) 24/7, with the exception of 2 days a week, about 6-8 hours a day. He also visits with grandma for about 2 hours a week. Thus a total of 18 hours a week maximum that the 2 of us are not together. And mostly because of Jacques' autism, we have been used to being isolated at home. We go out to a restaurant (Spur) with Jacques maybe once a month. We also visit church once a week.
We are fortunate enough to have daddy work from home, which has helped a lot. But Johan also frequently need to travel for work.
Since the enforced social distancing and lock down daddy has been home and not working. Unfortunately he has his own business and thus, no work, no pay. But those are worries we will deal with in faith and prayer.
With Johan home and free to help with Jacques, this has been a blessing in disguise.
I can spend time with Ruben, and help him with his home schooling in this isolation period. Because daddy is looking after Jacques.
We get to spend time together while he does his chores.
I get to sow tiny seeds of things that matter to me. For example, I love cooking. I inherited it from my mom, I even studied to become a chef. My mom could make delicious food, from sometimes limited resources.
I get to share this love, which I inherited from my mom, with my son. These are very precious moments I intend to use as often as this isolation time allows.
I also get to share some of the progress Jacques has made with Johan. I would usually not get the opportunity to brag about Jacques' "piano playing" progress.
The actual progress we have made is remarkable. He can now follow (with limited assistance) a row of different coloured shapes - basically reading the notes. He looks for the colored shape on the paper and then searches for the corresponding shape on the piano. This may sound very simple, but it is an amazing concept to grasp and we will explore it further.
Ruben and I get to play online games together. This may sound a bit unorthodox, but we play online poker together. Ruben knows it's just a game and no real money will ever be used. But it is still bonding time. I learn a lot about my son this way😜.
We get to watch movies together (though this has happened only once since the lockdown😳).
We get to braai together with ouma and oupa. We are lucky enough to live on the same plot as my parents in law and therefor at least get to socialize with them every once in a while.
It is day 10 of the South African lockdown for the corona virus and it has been like a cloud with a silver lining in my case.
With the outbreak of this pandemic on the world, I have to admit that it has not really affected me negatively. But I think I am the only one in our family that can say that with honesty.
Do not get me wrong, the Corona virus is horrible and what is happening around the world is terrifying.
It is especially terrifying for families like ours who have an intellectually disabled child who is also extremely medically fragile. As most know, Jacques has cvid (commom variable immune deficiency) as well as type 1 diabetes and ehlers danlos vascular type. He is thus extremely immune compromised and the corona virus will most likely kill him.
And that reality has been there for most of his life. The reality that the next pneumonia could be the end of his journey with us. And because that has been a reality in our life for so long, the adjustments we had to make has been minimal.
It is the two of us (Jacques and mommy) 24/7, with the exception of 2 days a week, about 6-8 hours a day. He also visits with grandma for about 2 hours a week. Thus a total of 18 hours a week maximum that the 2 of us are not together. And mostly because of Jacques' autism, we have been used to being isolated at home. We go out to a restaurant (Spur) with Jacques maybe once a month. We also visit church once a week.
We are fortunate enough to have daddy work from home, which has helped a lot. But Johan also frequently need to travel for work.
Since the enforced social distancing and lock down daddy has been home and not working. Unfortunately he has his own business and thus, no work, no pay. But those are worries we will deal with in faith and prayer.
With Johan home and free to help with Jacques, this has been a blessing in disguise.
I can spend time with Ruben, and help him with his home schooling in this isolation period. Because daddy is looking after Jacques.
We get to spend time together while he does his chores.
I get to sow tiny seeds of things that matter to me. For example, I love cooking. I inherited it from my mom, I even studied to become a chef. My mom could make delicious food, from sometimes limited resources.
I get to share this love, which I inherited from my mom, with my son. These are very precious moments I intend to use as often as this isolation time allows.
I also get to share some of the progress Jacques has made with Johan. I would usually not get the opportunity to brag about Jacques' "piano playing" progress.
The actual progress we have made is remarkable. He can now follow (with limited assistance) a row of different coloured shapes - basically reading the notes. He looks for the colored shape on the paper and then searches for the corresponding shape on the piano. This may sound very simple, but it is an amazing concept to grasp and we will explore it further.
Ruben and I get to play online games together. This may sound a bit unorthodox, but we play online poker together. Ruben knows it's just a game and no real money will ever be used. But it is still bonding time. I learn a lot about my son this way😜.
We get to watch movies together (though this has happened only once since the lockdown😳).
We get to braai together with ouma and oupa. We are lucky enough to live on the same plot as my parents in law and therefor at least get to socialize with them every once in a while.
It is day 10 of the South African lockdown for the corona virus and it has been like a cloud with a silver lining in my case.
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