How on earth do you parent a child who is dying? I wish I knew the answer to that question. So many people keep commenting on how strong I am right now. Ha! I’m not strong. I just have this ability to communicate my feelings and cry through it when I’m writing. But I’m not strong. I vacillate between numbness and despair most days. I try to avoid talking a lot about it with people. Today was especially tough as I had to go to the doctor. Our doctor is in the same office as the pediatrician Samantha was going to. I spent most of the appointment trying not to think about the last time I was in their office, when Samantha was starting to get sick. Everything about how she presented screamed that she was gassy. And when I heard someone (can’t remember if it was there or in the ER) mention a spinal tap I thought, “no, please don’t stick a needle in my baby’s spine!” But until they did the lumbar puncture, we didn’t know how sick she really was. Ok, I take that back, it was when she stopped breathing. It’s awful that she could get so sick so fast, and you couldn’t tell from blood work or her color or anything.
And now I’m terrified of what is to come. Her head has already grown 2 cm in circumference since Saturday. How much bigger can it get? And how strange is she going to look before the end? Her forehead is already looking huge. And her head is getting softer every day. I love her so much and I am so scared that the end is going to be awful. Travis keeps reminding me that hospice is really good about helping to control her pain. I know we’re not even into using morphine for her at this point. But how long until we’re having to do all of her feeds by tube and she can’t be picked up at all? I’m trying to not think about that right now, which is probably the best. I have to remember to take each day for the day that it is.
I already shared these on our caring bridge site, but I really do want to make sure people see them. The first is a video I took of Samantha back at the beginning of April. I had her on my lap and she was wiggling and just being HER. So I took the video on my cell phone. This is the first day I got it to upload to YouTube. Enjoy meeting our baby girl if you haven’t already.
The other is a blog post written by a hospice chaplain. I wanted to share it not because we have been hurt by well-meaning people (everyone has been so wonderful) but to help pass on some helpful information. Share it with your friends so they know what it means to care for those who are grieving.
I will try to do better with writing more in volume and frequency, but it’s tough when we’re also trying to spend time with people as much as possible. Please know how much you all mean to us.