Not the Best Day

So today was not the best day.  Not the worst by any means, but definitely not the best.

Beckett's flushes are not actually going through him.  Instead, they are sitting in him, and I can only assume that all of that fluid is being absorbed and causing many leaked diapers--if you catch my drift.

His button does not feel good.

He won't drink his Miralax or eat his Ex-lax.  This only compounds our situation.  So the home health nurse had to place an NG tube in him to get liquids and medicine in him. As soon as he saw it, he started to cry and thrash around.  He told her "no" and "special button."  His way of letting us know that he now has this fancy button and doesn't need the tubie in his nose.

So tonight, my almost 3-year-old shuffled around the house like a full term expectant mother, looked up at his daddy, pointed to his distended belly and said, "I hurt."

Break.My.Heart.

He did have fun moments today. He loves our new puppy, Turbo, and he enjoyed making silly faces at his cousin on Facetime.  He played legos with his brother.  He had speech today which he loves! So it isn't all sad.  But over the last couple days, the feeling bad is definitely creeping in and starting to take over.

Finding the right flush and timing is something that can take time and patience.  And we were aware of that going in.  And making a toddler take lots of medicine can always be a challenge.  We mainly stay optimistic. We are thankful for how well he is doing.  But I think it is probably okay to have a day where you feel a little overwhelmed by it and just wish you could take it all away.

And then at the end of that day, I pull a verse out of my jar (Thank you, Amy!) and read:

I have set the Lord always before me. Because he is at my right hand, I will not be shaken.

Psalm 16:8

But as for me, I will always have hope; I will praise you more and more.

Psalm 71:14

 

 

Praising our God for giving us hope through his Son. Praising our God whose grace is sufficient in my weakness.  Praising our God who can make all things new again.

 

Asking God for healing. Asking God for renewed energy and patience. Asking God for the right mixture for Beckett. Asking God for understanding and peace for Brant.

 

Thanking God for reminding me of his truths and for reminding me of the bigger picture.