How do you tell a 2 year old that her brother is going to die?

Straight and simply, you just say it. We have a script we try to repeat (repetition is the key to learning).

Rowan is dying.  His heart is broken. The doctors tried to fix it and we tried to help him get better but we cannot fix him.  Rowan likes us.  He likes you.  He wants to smile and play with us so he is at home now. We want to spend time with Rowan before he dies.

We talk about how we won’t go to the hospital anymore.  “Rowan is all done at the hospital”.  We talk about how Rowan doesn’t hurt.  Rowan feels ok.  We give him medicine to make sure.

When Rowan is dead, he won’t be able to smile or play. He won’t breath.  We won’t hear his heartbeat anymore.  Rowan will be gone.

She has shown understanding by repeating and varifying what we say.

She also is regressing some.  She has started trying to put everything in her mouth and chew on her fingers.  We offered her a baby teether and insist that if she wants to put something in her mouth, it must be that.  This keeps her from mutilating her hands or getting sores.

She also is afraid of sleeping in her bed.  At bedtime, she gets in bed with us and we watch variety TV (So You Think You Can Dance or Americas Got Talent) for about 20 minutes and then she will normally ask to go to her bed.  She likes her bed better so she actually prefers to sleep there, she just needs to feel safe first.

The hardest thing to cope with is that she wants to be held a lot more and she screams.  Loud. Frequently.

She starts screaming whenever she is upset.  If we calmly say “I can tell you are upset and I want to help you. Can you talk to me and tell me what is wrong?” and she normally responds well to that.  When she stops…we send her to Grandma’s house.

We are treating Evelyn like a person.  We talk honestly to her about what is going on and don’t hide our feelings or emotions from her.  She is sad too, she just isn’t entirely sure why.  We play games with her and try to spend time together too.

We have nursing coming in now to do periodic shifts so we can clean or nap or do laundry or sleep.  It helps.  Rowan gets morphine whenever he needs it.

We had to turn Rowan’s IV fluids down today because he had started getting puffier again.  He is now tolerating less than 10 ounces a day of fluid without it causing him to swell. 

This is happening to us and to Rowan and to Evelyn and we make sure we include her in this process.  We answer her questions. We talk to her about how he is doing.

We also have started to clean out some things.  For example, Rowan’s “oral therapy” tools we used to try to get him to take a bottle or food…Rowan doesn’t need them anymore.  We talk about how Rowan isn’t hungry and doesn’t need these things, so we can get rid of them.  We hope that by starting this now, when Rowan has died, we can clean out his things and tell her that he no longer needs them without her being as concerned by it.

We also tell her how much we love her.  Often. Because she is amazing.  She is a wonderful big sister.