Love in the Dark

   I have been thinking over a few random memories the past couple days one of them being a dinner we were invited to sometime last year.  We accepted our invitation as we needed to regain "normal". When we arrived at our friends home, children scattered off into the yard with friends and Chris and I stood in the kitchen each holding a baby and chatting. I'm not sure why I have so many feelings about that one evening but it seems to be burned deep. We had a good time, the kids were well behaved but as we sat there passing the salad bowl there was a gaping wound that laid bleeding as we ate dinner. It was as if everyone knew about this wound but ignored the bleeding.  I remember hooking Henry's tube up to start his feed and he instantly started to vomit everywhere. I remember the race of my heart the shake of my chin, the fake plastered smile as I cleaned him up.  We were hurting in a way that nobody could see, it was a dark difficult place to be. At home with our children our normal daily routines unfolded there was peace and joy, but social events would steal the very breath out of my lungs. I was miserable trying to be who I remembered myself being.  I resented every normal conversation, nothing about who I was felt normal.
As months went by I decided I had to find contentment in the puke, in the mountains of dirty sheets, and stained carpet. I had to find a way to peace in the journey,  even when the wound bleeds a little and no one seems to notice.
The truth is medical mama's balance all the normal motherhood things plus some.  We juggle therapies, appointments, meds, doctors, nurses, travel for specialized doctors and for the large majority of it we rock this stuff.  We are the moms of complexities.

Here's the thing we learn on our journey's as we juggle our medical mysteries, some people are jerks and it sucks but.... and this is a big but there are far more FANTASTIC people out there!!! Your friends who have no clue what your days feel like but show up at the drop of a hat. KEEP THEM! They are gold, and they help you remember who you are.  Find your tribe of other medical mamas that get your new found lingo, where there is no explaining for the millionth time what something means.  Keep that nurse that you connected with like you have been best friends since 7th grade and don't let her go.  Love these people! Because these people are the ones that are going to let you bleed all over the place. They are the ones that are going to clean up the blood and put the bandaid back on and they will do this over and over and you will do the same for them.

 That child the medical mystery, the child that you can't imagine life with out, your fighter,  the house of cards you build everyday over and over. They are ridiculously cute, and they have a determination for life that is inspiring. Look at them, soak every bit of their sweetness in. Smooch that G-tube button on their tummy, run your finger over their scars and remind yourself that you were chosen for this child. There is no one in this world that could do what you do in the most perfect way for him.