I have recently been guilty of reading other blogs of other peoples kids and other people and their medical issues. Why? I'm not completely sure but I think that it has to do with the fact that our life is no longer "medically interesting". Not saying that I don't love that fact but it is what we have lived since I was 20 weeks pregnant. I find myself being increasingly interested in Cyctic Fibrosis. I was touched by a mom (who's blog I read daily) that spent the last 7 years of her life fighting for her son's life. Conner had CF and a mild Prune Belly- this made it extra hard for him becuase he didn't have the abd muscles to cough good to get the junk out of his lungs. Anyway, Conner lost his battle 6 Thursdays ago. That's how his mom measures time- in thursdays- I can remember a time when I measured everything in tuesdays. That was when he was born, when he had several surgeries, when his nephrology appts were, the day he was transplanted. Sarah,Conner's mom, wrote the most amazing tribute to her sons life. It was gruesome to live his last day thru her eyes. I cried my eyes out reading her post because I could have been there. I still could be there one day. Do I want to think about that,No, but it does remain in the back of my mind.
So why am I rambling on and on about other people? I'm really not sure. Maybe because I almost miss that stressful part of my life, maybe mom's like me and so many others I know need that bit of stress to feel "normal". I know that I have always thrived on a moderate amount of stress but I understand now what the psych people tried to tell me before transplant. They said- depression is common after you donate an organ- I wasn't worried about it and still am not depressed but do see how someone could get depressed after surgery. Its a life changing event- our super busy lives we changed to a "normal" busy life! I sorta felt like this change was comparible to when I left hawaii and came home. Nothing was the same and I had to releatrn things all over. Its the same with Brayden, I have had to learn to not worry so much, not have my brain so tied up with med schedules, calories, dialysis, ultrafiltrated and labs. I now only have to worry about getting formula and meds ready for the grandparents and playing with my newly transplanted-full of energy- learning new things everyday baby.
My life has changed. It is for the good but it is change and change is wierd.
Night people
I came across your blog very randomly (I googled "mucous plug" and clicked on images and there was a cute one of him as a baby) and read this post. I have a friend who has been through 26 months of chemo and radiation for her little boy who turns 4 in two weeks (currently in "remission" -- NED, No Evidence of Disease). I think that when you get used to the safety net that is all the appointments and get used to the constant "triage" of events, it's hard to settle down into the quiet/boring that most families experience. I know that I read blogs like this and always wonder how I can help. You have a connection with other medical moms worrying about their kids that you wouldn't have had without this experience.
ReplyDeleteI've never been through anything of this magnitude with my kids, but I can say that YES, when they told you Brayden needed another scope and you start to worry about putting him under, yeah, that's what other moms feel like when told the same thing. We're possibly heading that way with my older son - definitely on reflux meds but still showing gastro-esophogeal problems. He's 5.5yo.
Congrats on getting through this time with Brayden - and continue looking forward to the days ahead.
~ jen
jen@saturdaybang.com