Things that are important:
- A journal I wrote a few "diary"-type entries, but mostly I used my journal to keep a timeline of Miles' medical procedures, to keep track of all of his nurses, to take notes on medical info that I needed to remember. It was a lifesaver.
- A CD of children's lullabies A friend made a CD of Dave Matthews, the Beetles, just a big variety of "Rockabye Baby" contemporary lullabies for us (you can buy Rockabye Baby CDs or download the songs from Itunes)....Miles loved it, the nurses loved it, we loved it...it really made our room a peaceful place in the midst of hospital craziness.
- A special children's book to read to the baby Corduroy, The Very Hungry Caterpillar, and Guess How Much I Love You were Miles' favorites. On the Night You Were born is also a book that we received later that is a wonderful gift to consider.
- A "flat friend" stuffed animal These stuffed animals added a friendly baby touch to the hospital room, and we used them for so many purposes like keeping Miles' hands away from the breathing tube.
- Lyrics to children's songs With Miles, my voice was comforting to him (and I thank God for that small miracle), and I wanted to sing, sing, sing to him. I found myself just remembering a few random lyrics to vacation bible school songs so my sister printed out lyrics for me so that I'd have lots of songs to sing to him.
- Dinner Eating is one of the first things to go with the stress and chaos. A meal or baked goods that can be eaten right away or saved in the freezer is so helpful.
- A care package of essentials For us, the essentials were: toilet paper, paper towels, OJ, milk, fruit, and coffee. My mom would drop off bags of these things every week or so to keep us going.
Non-"things" that are just as important...
- Frequent phone calls I rarely answered my phone mostly because I wanted to spend the time just with Miles--he deserved all of my focus. Plus phones weren't allowed in the PICU, plus I wasn't always in the mood to talk, plus it was so difficult to explain everything...still, it meant a lot to me when someone called and left a voicemail saying, "I've been thinking of you, Mitch, and Miles. I can imagine these days are so hard, and I'm just thinking of all the strength that you have. We love Miles so much too, and we're rooting for him every day."
- Meaningful emails or letters The short "been thinking of you" messages were good too, but the really meaningful ones were treasures. I had a friend who wrote long emails about how a sunset or a program on the radio or a verse at church made her think of me and the faith I was showing. She kept telling me that she was praying for my miracle.
- Listen It sounds so easy, but it was really special when a friend or family member would ask how I was doing--I mean really doing--and then just listen. No unhelpful comments like "This is God's plan" that could end up being hurtful---just listening.
- Specific offers to help "If there is anything I can do to help, let me know" is a nice sentiment, but it was even better when there was a specific offer. "I'm doing your laundry, what day do you want me to pick it up?" and "Unless you really don't want me to, I'd like to spend an afternoon just being with you at the hospital" were all offers that I loved, loved, loved.
- And of course...Be Super Nanny My mom and sister spent time being super nanny when Miles was off the ventilator and needed more comforting. They took care of Miles while I slept in the back of the room.
Wow. So with that, I'm left thinking of all of the special people who supported us while we were in the hospital. And I'm left very much missing Miles.