When my son was first diagnosed with Trisomy 13.. And I found myself having to make decisions about his care.. Like whether to give him surgery to fix his heart... whether to replace his NG-tube with a peg... or the myriad of other choices facing any new trisomy parent...I never really thought much about the future... My son was in trouble NOW... and so, all I cared about was how to help him... now.... Thats... all i cared about.
Mostly.. I dont regret this... because, actually... even if I had known what the future had in store for me... I’m quite sure I wouldnt have changed anything... I’d still have done everything I could to help my son survive... It wouldnt have mattered what anyone had told me... I had to fight for my son. For my family.
Looking back on that time... I think I was in survival mode... I was putting one foot in front of the other... making decisions based on what I thought was RIGHT... what felt like the RIGHT thing to do... morally... not logically... not what suited my interests.. Or societies interests... but, what suited him. What was right.. For him.
But, honestly.... I do wish I was more prepared.... I wish I had more knowledge about the future ... what kind of life my son would lead when he was 5.. 6 years old.. As he is now.. What kind of life I would lead as his parent. Because... this life is an extremely unique one. Its a restrictive life ... a repetitious life... and a life full of uncertainty. For instance... Going out with my whole family together... is a challenge. Constantly suctioning, changing diapers, and washing bedding feels, at times... endless, and admittedly.. tedious... And the ever present knowledge that my son will one day pass away right before my eyes.. Is, on the days I let those thoughts in... really tiring.
Its not an easy life... and its one that I sometimes wish I didnt have...
But its a life I have to live... if my son is to continue with his life... then, i have to just keep moving forward... not for me... but... for him.
This blog post was made into a video (below):
Mostly.. I dont regret this... because, actually... even if I had known what the future had in store for me... I’m quite sure I wouldnt have changed anything... I’d still have done everything I could to help my son survive... It wouldnt have mattered what anyone had told me... I had to fight for my son. For my family.
Looking back on that time... I think I was in survival mode... I was putting one foot in front of the other... making decisions based on what I thought was RIGHT... what felt like the RIGHT thing to do... morally... not logically... not what suited my interests.. Or societies interests... but, what suited him. What was right.. For him.
But, honestly.... I do wish I was more prepared.... I wish I had more knowledge about the future ... what kind of life my son would lead when he was 5.. 6 years old.. As he is now.. What kind of life I would lead as his parent. Because... this life is an extremely unique one. Its a restrictive life ... a repetitious life... and a life full of uncertainty. For instance... Going out with my whole family together... is a challenge. Constantly suctioning, changing diapers, and washing bedding feels, at times... endless, and admittedly.. tedious... And the ever present knowledge that my son will one day pass away right before my eyes.. Is, on the days I let those thoughts in... really tiring.
Its not an easy life... and its one that I sometimes wish I didnt have...
But its a life I have to live... if my son is to continue with his life... then, i have to just keep moving forward... not for me... but... for him.
This blog post was made into a video (below):
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