A word of advice

It's hard to know how to support someone whose child is in the NICU without ever having that experience yourself. Even then, people cope differently.

One important thing to remember when trying to be supportive is that it's not about you. As much as we want family and friends to know how Ian is doing, we don't owe anyone an update. Doug and I are picking and choosing who gets updates and pictures, etc.

I've found that it's easier to contact people who have always been a source of steady, unimposing support. Suggestions are tricky. The ones that have been the most comforting are the suggestions on how important it is that we care for ourselves. Please think carefully before making a suggestion that would add additional pressure to add to our current "life plate" or impose any undue guilt.

We will call or text when we feel up to it. Sometimes I just won't return a call. That's either because I forgot... Or I don't feel comfortable discussing our circumstances with a person. We may not visit Ian every day. I may not be the 12 hours daily NICU mom, but I will not feel guilty for it. I have to get rest and make sure Nia is still properly cared for. What kind of mom would I be if I kicked her to the curb? I want to hold Ian when I see him, but his sleep and development are more important right now. If he's asleep when I visit, I let him rest and watch him sleep.

Encouragement in the form of prayer, promised prayer, verbal hugs, saying "awwww" when I send a picture of Ian, taking the time to call or listen, commenting on or just saying you read my blog, declaring that God is a Healer, sharing revelations about Ian's future and health--these are all greatly appreciated and cherished interactions with family and friends during this time.

Please do not tell me how I should be coping or give me some under-inspired, lightweight nod towards biblical-ish ideal as to how I should be viewing our current circumstance. Prayer is really the best way we can be helped from afar.

Do not question whether or not our son is actually in the NICU. Don't tell me how to interact with the medical staff and to 'just let them do their jobs.' If I have questions, I will ask them. If something seems shaky, I will investigate and/or get a second opinion. You can't impose on me your way of being and interacting. I know enough to not make rash decisions or step in the way of my son's care, but I won't be left in the dark.

I have said all if this to say that there is a delicate balance here that needs to be respected. Some of my family and friends are especially skilled at striking this balance. They have been our best supporters.

Lastly, pretty please fight the urge to ask when he is coming home or how much longer he has. If I knew, I would have told already. Every time I am asked when he is coming home it's a sobering reminder that he isn't home.