While you dread your Monday morning

 

Monday morning is on the rise and you're possibly sitting and marinating in sadness that your weekend is over. 

Over here in our household, we're filled with other feelings. The most prominent mood that's set if you walked into our household is preparedness. We've spent most of our Sunday afternoon mentally checking off of our "GO" list. Our "GO" list refers to any time we travel with our son (99% of our travel is strictly appointment/specialist based travel). We're heading back to Boston Children's in the morning.

The ventilator and suction machine, the pulse oximeter, the trach "go bag" filled with emergency supplies to replace a trach... Do we have enough oxygen tanks that are full, do we have all scheduled medicines & tube feeds for the day? Are all of the favorite toys and gear packed for when our son has a meltdown (leading him to minor respiratory distress) in the stroller for when he gets his tests done? Don't forget the "normal" things like diapers and wipes, those are what I've typically run out of in the past. All safety equipment in tow from the "medical mom", but I forget enough diapers and wipes? THAT makes me laugh.

I imagine the quiet homes of others mulling over the tasks at work they've yet to even be smacked in the face with for their arrival on Monday. I say people are likely marinating in their pre- Monday moods. Then again, I'm just a human filled with assumption. I'm marinating in my HOPE for our Monday morning appointments. It's different, right? It depends on your perspective.

I sit here listening to my sons respirations from the sound of his ventilator... and deep in my soul I'm praying for good news tomorrow. I have this idea that I've built on over time and my experiences... If I stay positive without holding high expectations for my sons medical status, I can't be anything less than happy. If I'm being to the point/ honest, that's a pile of horse manure. No matter how positive I keep my perspective, I am bound just as much as any other human, to feel the punch in the gut reaction when I get back medical results for my son that aren't trending in the right direction.

My HOPE is that my sons cardiac results for his Pulmonary Hypertension will have improved over the past three months. In just two months my son will turn two. I love him with every ounce of my being. He fills me with immense strength. His medical status has had me question my own faith far too many times than I can count. He's precious. Young. Forever my "baby".

In this moment I know, that no matter what the results say, they're just like any other mountain we've looked up at. I've stood at the foot of many mountains the last two years. When I was too tired to look ahead or the weight had become too heavy to bear,while trying to reach the peak, my son would smile at me. It was then that my faith would kick me from behind and tell me that I had better keep on our journey.

We've stood upon the most beautiful mountains. The air has allowed us to exhale sadness, and the wind has brushed the hurt off of our shoulders. The sun was warm and melted the hurt from the hike that we felt away. Our bruises were rested on mountain tops. Rejuvenated. Again, we would fall, or graciously head downward the mountain side. But after every fall, it has always had another marvelous mountain for us to embark on.

Tomorrows mountain is called THE WRAP UP OF 2018.

Please keep us in your prayers and thoughts as we check off (hopefully) the last of our 2018 out-patient appointments.

 

Support our journey

 

 

 

ANYONE who would like to make a donation to support families in the NICU surrounding the holidays:

Check out this lovely non-profit

https://www.forehadley.com/donate-1/#donate

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