Being home with all four of my boys yields such tremendous joy & extreme happiness paired with tremendous sadness.  I live moment to moment and don’t have a lot of peace in this exhausting chaos. 

And the boys and I are constantly wondering when I have to leave with Marshall again. 

Marshall’s bloodwork from Monday indicated the heart failure is worse since the milrinone wean.  And the echo showed valve regurgitation (another indicator. )  The scary diapers haven’t stopped.  And he has started to hurl intermittently again.

But he is soooooo happy. 

And the wild boys and I are sooooo relieved to be together again even if everything feels like a mess.  (And looks like it too.  My house has never been in such disarray.) 

I sat at the pool with my boys Monday while Marshall and his dad visited Grandma Martha.  As I held two big boys and watched one impress us with his swimming & diving abilities, the two in my arms voiced everyone’s uneasiness about me leaving again.

“Do you have to go back to Boston?”  They asked.  “Yes, but hopefully not for a while.” I offered. 

It is the best I can do.

There is no research I found that could have prepared me for this. Marshall though happy, is so sick.  He takes 19 doses of meds per day – administered from 8 a.m. to Midnight.  He screams, cries, and gags during the 20 minutes or more it takes to push more meds than his tiny belly can hold into his too thin body.

Then he doesn’t want to eat.  And then he has a scary diaper.  Then it is time for more meds, more screaming, more tears.

And we have to give him shots twice per day to prevent stroke.  I can’t even tell you how awful that feels.  What’s worse, he can’t really learn how to roll,  play and explore because of the shots.  We all have to fall before we can learn how to sit or take a stand.  And a fall would more than jeopardize Marshall’s life because of the blood thinners.

And all of this costs a fortune.  We have a nearly $500,000 dollar baby.  And when a woman like me has four boys to feed in this crazy world, the percentage of my portion of Marshall’s care has tapped my financial resources out.  Payment plans are tourniquets on a massive financial bleed.

I am not one who is easily intimidated but honestly I am scared witless at times.  Especially those moments I spend waiting for Marshall to catch his breath after a coughing/gagging/wretching spell.

The money will come or go.  Dollars mean so little to me.  These little people matter most.  And I can’t afford to lose any of them.

I feel like a soldier sent home early from war.  Home is so foreign and full of memories – not all are good.  I would guess I have some post traumatic stress going on from the 9 weeks minus one day stay at “hotel Boston Children’s,” the longest absence I have ever experienced from my wild boys, and the ever present, constant threat which lives inside of my baby. 

Please understand I am not complaining. I would never trade any of this for anything. In giving my existence as Tristen, Seth, Isaac and Marshall’s mom a voice, I have to address everything. And I try to always keep it positive. But sometimes giving my fear, worry, experience, and hope some air is all I need to soldier on.

With that, I have some boys to hold.

And more meds to give. 

And one little incredibly amazing baby to watch play in his exersaucer while I sip coffee to gain some energy…