Coping with semi terminal illnesses

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Note: This may turn into more of a vent because I am just learning information and the hurt is still new.

5 months ago, my son was born and diagnosed with Pulmonary hypertension disease. Based on how his lung function was and having a heart defect, we were given a general prognosis of a short life expectancy. They basically said all people with this condition eventually die from congestive heart failure once the treatments stop working. They said his heart and lungs could easily fail as an infant/child or it may last till he's an adult. Only time will tell. That was hard enough to accept. I am finally just getting around to being able to go through a day without fearing.....what if this is the day? What if he gets a virus that his lungs and heart can't fight through and he dies? I cannot express the amount of stress I've felt in these last 5 months. 

A couple nights ago, my 4 year old was diagnosed with a progressive/aggressive lung disease. The average life span is anywhere from 4-12 years. I was in complete shock to say the least. How could this be happening? What did I do to deserve to go through heart ache and fear? The rational side of me knows there's nothing I've done. But the irrational side of me says....."Well your own health has been sliding downwards for 5 years. MAYBE you shouldn't have continued to have kids. MAYBE your body failed them." I know, crazy, right? But it's how I feel. If you would have told me years ago that two of my children would have to live with deadly diseases, I would have probably stared at you like you were crazy. Cause stuff like this doesn't happen to good people, right? Wrong. 

I have been so depressed since finding this out. I can't stop blaming myself. I don't think I'm ready for this. I know I'm not strong enough to handle it all. When my son was first diagnosed, everyone kept saying, "Rachel, you got this! He's a fighter. You're such a strong woman." But I don't feel strong. I feel completely weak and helpless in a bad situation. I don't know anyone IRL that has had to deal with something like this. My mom lost a child to SIDS years ago before I was ever thought of. So yes I know she could help me with the grieving process. But I feel so alone in this mess. I haven't even told anyone but my best friend about my daughter's diagnosis yet. I'm waiting till after we go to her Dr and find out more answers before I scare everyone. But I don't even feel like she  understands. And I know no one else will. They're all about saying, "Trust God." Which I do. I'm respectfully religious. But sometimes, saying that just doesn't suffice. I'm not stupid, I know there is a chance that my children may not die at least as early as they are saying. But that doesn't mean the fear automatically goes away. I'm a realist so when someone tells me my child probably won't live a full life, I tend to believe it rather than err on the optimistic side of things. Maybe that is a fault in me. It's just that I've always had so many bad things happen constantly so it's very hard to remain optimistic when bad situations arise. I want so much to believe it's going to be alright. But I'm truly scared. At least with pulmonary hypertension, there's treatments that they'll do. With the lung disease, as far as I've read they only provide supportive care until it becomes a situation where a transplant is necessary. Which to me, supportive care is basically a cop out. Like, "We give up cause nothing is working." :( 

I don't even understand why any of this is happening. God must think I'm one heck of a woman to deal with two children who could possibly be dying right now. All I know is I don't want to do this. I don't want to be this person. I keep hoping I'll wake up and it'll all be some kind of nightmare. That both my kids never were diagnosed with diseases. But it's not sadly. This is going to be one long roller coaster of emotions for me, I can already tell. From specialist appts, to treatment plans to possible major surgeries in the future to life in general watching my two kids struggle with their health. All I can hope for is the best, expect the worst at this point I guess. 

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1 Comment
Nida S. Dec 23rd '14

God really does think you are one heck of a woman. I can only begin to imagine how you feel right now. As a mother it's too hard to even think of our children getting sick. I just want to send in a bunch of prayers and best wishes to you and your beautiful children. May God make things easy for all of you.