My son has a chronic illness but his dad wont understand
by jana
(india)
My son suffers from juvenile ankylosing spondylitis and has sufferred excruciating pain for the last 4 months. He has been sick almost his whole life. Even when he had fever of 102 my husband would shout and ask him to study. He would sometimes feel bad but mostly he would ask me to make sure my son didnt watch tv but read his lessons. Now that my son is diagnosed with this disease the situation is worse. he has missed his school in +2 for the first two terms and so cannot catch up. i am thinking of homeschooling him because he will be on strong drugs and has to make a lot of adjustments to his life and diet and has to rest when he is in pain and also not play any sports. he feels lonely and isolated but is very cheerful even then and jokes and laughs a lot. he has a lot of ideas and plans and dreams and i encourage him - even while i remind him that life is tough - AS if he needs reminding being in pain a lot of the time! he loves music and will work on it all the time. once he is better i plan to not only homeschool him but also give him more than a school can give. in terms of foreign languages and arts and creativity. i feel he needs hope so he knows there is a good life and it is not all pain. he also knows he has limited time in terms of being able to achieve what he wants. as in he has to do a lot when he is in remission. my husband took a long time to understand his illness and sometimes is kind (mostly he has been a good dad)but even now, at this critical time when we are reeling under the diagnosis and the huge medical bills to come and dangerous drugs likely to be prescribed , my husband is losing his temper with my son. my son is 16 so maybe it is teen hormones with also frustration that life is so bad for him right now. my husband says i allow him too much leniency. maybe he thinks toughness is necessary but now? my son is getting more and more frustrated and angry. i let him talk to me but any attempt to exxplain things to my husband only leads to shouting matches - even, unfortunately, in the hospital where my son was admitted. i dont know what to do.
