Four years ago my life changed forever. It wasn't the joyful birth of my first baby. It was the horrifying news that came with him--that he was born with severe heart defects that would lead to a life of heart surgeries, extended hospital stays, multiple daily doses of a variety of foul-tasting medicines, and little-to-nothing that resembles a normal childhood. Sure we've had laughs and healthier times, but those seem to be sprinkled between the uncertainty and painful medical dramas.
This is the second year in a row that Preschooler in Chief has spent his birthday in the hospital following a heart operation. He's had five surgeries so far, two in the past two weeks. Yesterday's surgery was #5... 13 days ago was surgery #4. And we've reverted PIC back to the circulation he had after surgery #2. So basically, the last three surgeries, seven heart catheterizaitons, 193 x-rays and 68 days in the hospital (and counting) were all for nothing. It's so disheartening.
Anyway, we decided not to even mention that it's his birthday, and we've made that clear to the staff as well. No birthday talk allowed. You could argue that since he is alive, it is a reason to be happy on his birthday. And I'm so grateful that he is alive, but no kid should have to suffer the way he has suffered. There's nothing happy about that.
hi suzanne,
ReplyDeletenot only should no kid suffer through what riley has, but neither should any parent as you and ken have. you've been given the task of being responsible for this little guy. and what the hell!!! you are in this strange vortex of attempting to control the situation and yet it's so out of your hands...
i hope it's somewhat cathartic for you to write. and lord knows, maybe Riley's 5th birthday will be a most wonderous occassion.
Riley apparently has a pretty strong heart despite it's uniqueness. :-) Much much love.
Hi. Delurking to say hello. I've enjoyed your writing and wish you strength on this painful journey. Your love for your boy is immense.
ReplyDeletehi suzanne
ReplyDeletemy heart goes out to you. it is very noble to be able to express your feeling this way. you are so correct in feeling these things. your life with riley will be so great. this is just a tough time and because you are strong and ken is strong you will continue to make rileys life as normal as it could be because of who you both are. riley's best present for any day is having you both to care love and nurture him. know that we care about your wellbeing and pray for continued healing for riley and your entire family.
love
cousin marisa and cousin dave p
You don't know me but I stumbled upon your blog while looking for pictures of femoral lines on Google to use in one of my lectures for pharmacy students. I'm a former pediatric intensive care unit pharmacist who had to stop and read some of your blog as a reminder of what I used to see every day (although our hospital was not even close to doing Fontan or Glenn procedures). I also read your blog to consider how lucky I am that my own child is healthy. I wish I had gotten to know more parents like you while working in PICU. You are an inspiration to all parents for having the heart to stick with Riley through all this (not all parents do as I have learned from my experiences; lots of sick kids with foster parents). I don't blame you at all for waiting to celebrate the b-word when there's something to celebrate. Wishing you and your family the best...
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