April 07, 2011

Mother of Hurl


*this post may contain language that is offensive to some and is not for the gastrointestinally weak*

Lovely early spring evening last night.  I spent it watching the neighbors walking their dogs, joggers passing by and listening to children playing in their yards while I was in my driveway, fully armored with my surgical mask and rubber gloves, scrubbing down feeding chairs, iv pole, support mats, etc. that had just taken a direct hit.  Double bolus tube fed super hurl.  I cannot even stress how voluminous that is and will spare the details of just how much square footage that can cover in a family room.

I have mentioned the "stinging moments" before.  That is the only way to describe them -- brief moments that I feel an acute sting in realizing the loss.  The loss for Bridger, for myself in what was lost as I took on this new journey.  Waving to my neighbors with my rubber glove, cleaning up vomit as they walk by enjoying a blissful walk = sting.  Even more sad, was that was how my day started as well - just a different room.  Actually, my day didn't start that way, it started at 4:00am when Bridger woke up bright eyed and bushy tailed ready for the day and there was no convincing him that the day didn't really start for 3 more hours.  So the earlier vomit episode really felt more like mid-day to me.

To summarize the past 30 days for Bridger:
stomach flu
c-diff infection
lots of trips to the doctors, luckily only one loooong ER trip, lots of midnight and early morning steaming sessions and sleepless nights

Almost all of the above include lots of vomit as Bridger struggles to manage his secretions and therefore everything triggers more hurling - and that's not including the sensory-induced fun that occurs when I may present him a pancake when he brain was thinking he was going to see a waffle, or when a crumb of bread gets stuck on his lip, or when he sees his brother eating a wheat thin.

I declared to Alan last night that the latest batch of towels were now disposable as I couldn't bring myself to clean one more.  That is the best $20 I have ever wasted.

One friend feels the need to keep telling me how tired I am looking lately.  I have mirrors.  The obvious need not be stated.  Instead, please tell me that you like the shade of lipstick I am wearing - even if I am not wearing any.

I have learned a lot about energy in this journey.  Every challenge and stressful episode creates a certain amount of energy.  Left alone, that energy will naturally turn into a negative energy and be a very big weight to carry.  I have learned that I can immediately channel that same energy into a positive direction and rid myself of that weight and feel the therapeutic benefit of changing that negative energy to positive.  So all of the negative vomit-schlepping energy over the past 30 days has been channeled to this new hat I am wearing which is my personal mission to help families with special needs children enjoy lives of inclusion within their communities.  The head of the local hospital (after hearing of my latest ER nightmare) invited me to join him, some of his board members and charge nurses for dinner to tell them ideas and strategies that their hospital adopt to better serve our [special needs] community.  I invited several of my special mom friends to join me for that.  I have arranged with the local bounce house arena for a bounce night exclusive to special needs children and their sibs for a gentler safer bounce time.  I also am spearheading an effort to build an "accessible and inclusive" playground for our school, which will be the first playground in this category in our county -- just finished working with the company to design, busy now writing grants for the $150,000 price tag. 

I'm ready to have less negative energy to have to channel though.  But as I watched Bridger sleeping last night while Edelweiss played in the background, I was reminded that vomit is such a small price to pay for something so precious and beautiful.