Yep, that's us. We live slow. Life with a medically fragile, special needs child has slowed down our life considerably. I didn't think it was possible, really, to get slower, but indeed it does. It seems this year has come at us full force with struggle, without respite in between. Injuries, illness, and vehicle problems, and now more injuries.
When Lillian came home from the hospital at birth, I was up, without sleep, nearly 24 hours a day. I'm not exaggerating in the least. She vomited constantly, her feedings were around the clock and machines needed tending. I did it. I didn't have a choice. Many people say, I just don't know how you do it. I wasn't given the choice. I love her and I did what was necessary to take care of her. Sleep was just not part of that chapter of my life.
Over the years, sickness has interrupted my sleep, I found I could live with out it...I even feared, at one time, that I had made sleep a god. All I longed to do was sleep.
Here we are and sleep or rather the lack there of is making me a crazy person. I keep telling myself , " hey, you went through all those years without sleeping, deal with it" but I'm struggling. More nights than not she is staying awake for hours on end. Last night was one of those. This has been going on for a few weeks before her accident. I always felt really lucky that she slept and slept well, but now she's not and I have no idea what to do. I stripped away her mt dew...didn't help. I ramped up her sensory input...nothing seems to be helping. I'm tired. Pray for sleep for her and me. This morning, she lay in the other room crying for me pitifully, and I laid in my bed and cried. Eventually , Matt got up and went to her, but it was very close to time for him to go to work by that point. And honestly, I don't know how she's keeping herself awake...she MUST be sleepy.
Yesterday she had a follow up appointment for her leg. He said the cast looked good and we go back on the 24th. They will remove it, rexray, and then we'll see where we go from there. She also rolled herself right off the couch yesterday and I think I got her scooped up before she stood up on it, but that's what she tried to do.
We have been blessed with a few surprise dinner meals from some sweet friends and I couldn't be more grateful. I'm exhausted mentally, emotionally , and physically and cooking is the last thing I have on my mind at 5 pm. I'm grateful Madeline is home for the moment to help out. I'm grateful that there is an end in sight for this cast and prayerfully and end to these sleepless nights.