Monday, July 19, 2010


A friend recently learned that her preschooler has a chronic medical condition. It (as always) came as quite a blow and has given the little guy's parents lots and lots to worry about. As I've 'watched' her learn to deal with all the diagnosis means, I was reminded of what I felt when my oldest was diagnosed with severe hemophilia. It sucked.

I learned early on that it's normal to go through the grieving process during something like this. After all, we're grieving the loss of the life we thought we'd be leading. Somehow we think that the carefree, easy life we had planned is trashed. And, sort of, it is. We grieve for our children...what kind of life are they going to lead? We wonder "How can this be my life?" "What did I do to deserve this?".

When I go back and look at the stages of grief, I can vividly remember the mindset I had each step of the way.

Denial and Isolation: I thought the tests must somehow be wrong. My kid's tests got mixed up with someone else's. If I just stay here in the hospital room, they'll get it figured out. I don't want to call anyone right away and tell them because maybe the tests are wrong. Surely the lab messed up.

Bargaining: I'd be happy to give my life up so he won't have hemophilia. Maybe MY tests got mixed up with HIS and it's really ME who has hemophilia, not him. I promise I'll be perfect and the best parent...then this will go away. If he learns how to breastfeed properly, then that means he doesn't have hemophilia.

Anger: Why us? Why my family? Why my kid? How come all the other mom's in my prenatal class didn't have kids who are 'sick'? Fuck you lady with your cute newborn. Is this God's sick joke? What about MY life? THIS is what it's going to be about from now on?

Depression: It's not going away. We just had to infuse. This is real. What am I going to do? How am I supposed to deal with this? This isn't fair. Our lives will never be normal. My kid is going to be the freaky kid no one wants to play with. He'll never have friends because his friends' moms aren't going to want to worry about this. Great. It's all my fault.

Acceptance: It is what it is.

And I moved back and forth through all these stages for quite some time. When it was time to enroll the boys in school, I'd get all mad and worried's not fair, this sucks. When they had to have their ports inserted and removed. When a kid made some dumbass remark to my oldest I'd get all pissed again.

But it was most assuredly grief. The key for me was to recognize "Oh, great, here it comes again" and let myself feel selfish, angry, and put upon. By acknowledging that what I was going through was real it made it easier to move through it. I also found other parents to talk to and I would ask them "So, what the hell is the deal with me and my pity party." I'd get great stories from other moms and dads.

One mom told me that she just took off in her car for a few hours with the notion of heading to Tijuana. Others told me that they ate like crazy or shopped or smokes packs of cigarettes. Hearing their stories made me normal; made me realize that I wasn't going to float off the deep end. Their stories made me strong...if they can get through it, so can I.

And then there were the parents who claimed they NEVER experienced anything like what I was saying...those parents are still stuck in denial land.

The another thing I've seen happen too often is relationships that don't survive the diagnosis. One parent gets stuck somewhere along the way and the other one can't help. This shit makes or breaks a marriage. If I was having a shitty day, my husband just kept plugging along and vice versa. We learned what we each were good at...he rocks at placating doctors and I'm damn good at dealing with insurance. He taught me sterile technique for infusing and I wouldn't let him be over-protective of the boys.

I'm not sure if my friend will read this. If she does, I hope she'll see some of what she's experiencing right now in what I went through. When I look back on those early days I wonder how in the hell we got through them! It was rough, it wasn't always fun, and we had a lot to learn in a real short time. Of course I would prefer that my children NOT have a chronic medical condition, but I can say unequivically that our family would not be as strong, as close and as committed to one another had we not experienced this together.


Emerge Peoria said...


Ramble On said...

Powerful stuff, Rix! Well said. Brought a tear to my eye. I can only imagine the pain. Hope that Friend and Spouse both read what you shared.