Being here reminds me how blessed we are to have Maggie doing so well. Yes, her feeding issues are serious and scary, but things could be so much worse. The hospital that we are in now is a stopping point for children with severe injuries or impairments. They are stable, but not stable enough to go home. The children have intensive occupational, speech ,and physical therapy all while being monitored by a doctor. A lot of these children have been in accidents or suffered near drownings in the bathtub or pool and have traumatic brain or spinal cord injuries. Some children's injuries stem from abuse and they have been taken from their homes and their families don't visit them. Then there are the premature babies - some born after Maggie was - who are still on ventilators. For some reason they just could not wean off of them. I met a dad of triplets yesterday born at 26 weeks. The two girls are doing great, but the boy is still intubated and has a g-tube and has a long road ahead of him. How that family is managing have two babies at home and one in the hospital is hard to imagine.
Then there is the feeding program which helps children who have oral aversions start to eat again. Some have trachs and, because of prolonged time on ventilators, have negative associations about things touching their mouths. There is a two year old boy down the hall who had leukemia and the potent chemo made him throw up constantly for nearly a year. He had to have a feeding tube to get nutrition and now the feeding team is trying to work him off the tube. Another twelve month old baby girl down the hall never had a feeding problem until she went for an MRI back in March for another issue. She came out of the MRI and would not put anything to her lips. She stopped eating and drinking completely and they don't know why.
All day long as I hear stories all I can think is, "these poor parents." And, let me tell you, you haven't seen exhaustion until you've seen the faces of some of these parents with severely impaired children. Exhastion from sleeping in horrible pull-out chairs for months. Exhaustion from the mental stress of managing their child's hospital and insurance needs. Exhaustion from trying to be strong and positive for their child while dealing with the deep sadness over the loss of the life they had dreamed for their child.
Someone told me recently that it's not good to compare your situation to someone else's much harder situation because it can often leave you feeling worse (i.e. I shouldn't be so down about Maggie's feeding issues when so-and-so has it so much worse than me.) but seeing what these other children and families are struggling can at least give perspective. As Justin said yesterday, it's hard to be upset about little things anymore after you've seen what we've seen here in this hospital. I am convicted that I need to live in the moment and not always be anxious to get out of this season of life. There are many precious moments and blessings in this crazy life. We have our daughter, who is alive and vibrant and joyful. And no matter how hard things get, at least we have hope that Maggie will have a normal and healthy life. Not many parents here have that hope.
P..S. Maggie has been doing so well that we are planning on going home tomorrow if she does well through the night. It makes me nervous but I know we need to bring her home into her own environment. Thank you for your prayers.