Blurred Lines

It’s been almost a year since Max has been diagnosed, and with each day I become more and more aware of the fact that I hate being a PBD Mom. There - i said it.

I hate when the first thing that someone says is “So how IS Max” and I have to fake enthusiasm because it’s 9am on a Tuesday and crying will ruin my eye makeup.

I hate the deep jealousy I feel when I see other people’s 1 year olds mastering milestones that Max struggles with every day.  

I hate that everyone  immediately tells me how tired my son looks.  1.  you’d look tired too if your body was fighting half as hard as his is. 2.  That’s just kind of how he looks and we think he’s adorable, ok?

I hate that the financial security that we worked so hard to establish and secure is now in jeopardy

I hate the doctors appointments and the blood draws and the massive amount of medical equipment we now own.

And of course, I hate that I’m going to lose him.  Something that, despite my best efforts, I think about every single day.  

But with each passing day, I also become more and more aware of the fact that I love being Max’s mom.  The kid is pure joy.  Never upset.  Never angry.  Never whiny.  Just happy and loving.  He has taught me to take each day at a time and to never give up.  He has given me strength and a purpose that I didn’t know I needed.  

But honestly, I still struggle to separate those 2 entities - PBD and Max, because every day with Max is dictated by PBD.  When you’re in the ER for the second time in a weekend?  Or when Max rips out his hearing aid for what feels like the 100th time that day? Or when Max is so constipated that he’s screaming from pain, how do you keep your thoughts away from frustration with Max. Because all that frustration isn’t with Max, it’s with PBD, but the line sometimes feels so blurred.  

The more blurred the line becomes, the more guilt I feel about my constant frustration and sadness. It is only recently that I’ve been able to make peace with the fact that it really is okay to hate being a PBD mom and that does not mean i hate my son.  I hate being a PBD mom because I love him so much.

And how could you not love him....