January 8, 2020 10:33 pm

Had a scare today. Vomiting brought us back to the hospital to check in with the Nephrology team. Any and every symptom has us on edge. More bloodwork. More monitoring. More questions. Not enough answers. Thankfully we were able to go home and continue outpatient dialysis. Still waiting on some things before he can be presented to the transplant team. The pediatric dialysis center at CCMC will open soon in March.

Some nights I sleep and have nightmares. Other nights sleep is elusive. Gone are the days when I could fall asleep (almost) worry free.

I pray when I tiptoe in at night to check on him while he is sleeping. I pray some more every morning I walk into his room that he will wake. Each time I give thanks and praise for another day.

Trying to make sure Alexander stays well emotionally and physically is an ongoing challenge. I can’t shield him from germs and bacteria. It’s impossible to know if he is around anyone who is unwell, much less do anything to prevent it. I can’t keep him in a bubble.

“Did you wash your hands properly?”

“Keep your hands out of your mouth and away from your face.”

“Tell me everything.”

“Where’s your coat? Your hat?”

“Don’t dismiss anything as minor.”

Of course he gives me this face. 😑

And of course the face is followed up with grumbles.

Balancing what he can eat, how much and how often has me eagle eyeing everything and it frustrates him. The pleading in his eyes breaks my heart but I know I have to be strong. I’m not perfect. I feel immense guilt when I give in and don’t give in to his negotiating.

“Just one”

“Please”

“Can I have it on Wednesday?”

I try to stay away from no, yes and maybe. Instead I try: What are the possible outcomes? How could this affect your body? What are we working towards? How important is this? What will you do?

I can’t control everything. I can only hope he takes a moment to think things through. Most importantly I have to remember he is 12 and needs to be heard and supported.

#FindADonorForAlex

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