We took Lila home from the hospital in an ice storm, and yesterday, we moved into our new house after a snow storm dumped about 8 inches on us. Go figure. When will our luck turn around?
Lila has been holed up in a hotel room with her Nana the past few days while we get settled into the new place. I’ve been moving during the day and sleeping at the hotel. Today, we bring our little girl home again.
Life with Lila at home has been very difficult. Hardest thing I’ve ever done in my life was taking care of her the first week in our cramped little house. Oxygen equipment, feeding tube, medication, dr. appointments… and a baby that didn’t want to sleep for more than an hour at a time during the night. This is harder than I imagined. Harder than bedrest. Even harder than her NICU stay. Or maybe it’s just a different kind of hard.
I’ve felt very alone. Nobody can understand what I’m going through unless they’ve gone through it. I’m under the impression that many people think everything is peachy now that Lila is home. This isn’t so. We have major obstacles ahead of us. I have a support system on Facebook of all places. A group of pPROM moms created a group called pPROM Warriors, so this is where I go for much of my support. It might seem weird confiding in strangers, but this group of women are no longer strangers to me. We’ve been through hell together and back. We were there for each other during bedrest and all the way through caring for our special needs babes at home. We cry together. We laugh. We share tips and info learned from our medical teams. We hold each other up. It’s a beautiful thing and I intend to meet as many of these moms as I can. I have new friends in all corners of the world!
Thank you to a number of people who helped us move yesterday. I was feeling pretty defeated and disappointed in our friends when nobody showed up to help in the morning, except for Tom and Lora, friends of mine from work. Of course our parents were there. Then I got a call from a woman I’ve never met before. She’s been following our story online since June, saw my plea for help on Facebook, and felt compelled to come to our rescue. So there I am in a snow-packed street hugging a stranger who I now consider a friend, tears pouring down because I’m so damn giddy that there are good people in this world. Thanks to Sheri and Paul for your help. You really turned the day around for us! And later, we had some friends show up and we got the job done. Big thanks to everyone, whom no doubt is sore this morning.