I'm thinking back over the last year and thinking about all the times that people have asked "What can I do? How can I help? Is there anything you need?"...and at first we didn't know what to say. We didn't know what we were in for and what we needed. If you have just gotten a diagnosis and are just overwhelmed with life right now, this may help. If you are a friend of a friend of a friend, or just know someone who is ill and don't know what to do and they can't find the words to tell you what they need...maybe this will help.
What can you do?
Pray: We needed lots of them. Aubrey came home from a week in the NICU at 4lbs. 10oz. and needed to weigh 10lbs for surgery. I would have to look back at my book, but it took almost a month to gain 6 oz! We needed prayers for weight. (we didn't make it to 10 until 4 months after surgery--she's a slow grower:) Prayers for continued health. (we were able to keep her completely healthy until two weeks before surgery:) We needed restful sleep when we could get it and we needed to stay healthy to take care of all the day to day stuff. We needed prayers for strength to get through this. We still do tell people to pray for us, but it is different now. In those early months, we felt like we needed more. Now, we feel like we have most things under control, but it never helps to have people praying for sanity and good doctor visits and things like that:)
Food: I used to be the one who cooked meals and took them places for people when they had babies or were sick. I appreciated the fact that someone just organized meals for us. We were so tired, we couldn't think straight! It was so helpful to have a good warm meal on the table every night and I didn't have to worry about it. If you know my husband and how he eats, then you know it was such a relief to not have to worry about feeding him! They planned meals for about a month after we brought Aubrey home and then again after we brought her home from surgery for about two weeks. Looking back, I don't know if I told people how wonderful it was, but I am trying to pay it forward now.
Donate Blood: Aubrey had several transfusions during surgery and platelets etc. after surgery. Donate. Donate. Donate. We relied on the kindness of strangers donating blood to help get our little girl through surgery and recovery. To all those out there, who give regularly, Thank You.
Babysit: We have three other girls besides Aubrey and only one was in school last year. It was so helpful to have people offer to watch the girls for doctor appointments. I don't know if I would have been able to focus on what they were saying if I had two or three other kids in the room with me! People were kind enough to say, "I am available on Tuesday, Thursday and Friday and I WILL TAKE YOUR KIDS for that appointment!" If the offers were open ended it was hard to call them up and ask for favors. But they made it easy.
Tell them how cute their baby is! So much of this past year has been about her heart and on going health. And yes it was a big part of her day to day life, but she was our beautiful little girl too. It was nice to just talk about how wonderful she was and the wonderful things she was doing versus all the medical stuff all the time.
Just be there. Sometimes there just wasn't anything to do or say, but just knowing that we had people to support us was wonderful or a smile to give us a boost or a hug to give us a little lift. Sometimes the things that people thought were so little meant the most to us.
We truly appreciate all the help and support that we continue to get. You have have been a necessary part of our lives and we love you.