Our stay at Children’s Medical Center has finally come to an end. A reason to celebrate, right? I want to have that sense of relief, knowing he no longer requires that level of care, but instead I find myself full of mixed emotions.
Some of it certainly comes from having to adjust to a new setting. He’s out of Children’s, but he isn’t home. We met lots of people yesterday, and they were all incredible friendly and welcoming, but it’s still another hospital. He has a nurse, a respiratory therapist, and a tech. And, although not as frequently, they still monitor his vital signs and listen to his lungs. Don’t get me wrong, we are very thankful to be here. People come from all over so their children can attend this feeding program. We are so fortunate that we live here and he’s just a few minutes from home.
Some of it also comes from how James is adjusting to his new surroundings. It is more difficult for him than I anticipated. James is usually a very happy boy. He smiles, plays, and ‘talks’ all day. Even at Children’s people commented about how happy he is, and what a good boy he is, so content. Yesterday there were times he cried and cried. It was a soft, whimpery cry, and nothing I did would console him. He played too, and explored his new room, but the crying was heartbreaking.
Most of the mixed up feelings I have comes from the fact that it’s a feeding program. The most basic need a mom desires to fulfill is feeding her child. When feeding is a struggle, I can tell you from experience, there is real pain and real heartache. It brings tears and feelings of such failure. For me it started when I wasn’t able to pump enough breastmilk to meet his needs in the NICU. (When your baby is already at a disadvantage from premature birth and truly needs all the benefits breastmilk will provide, and then you can’t provide that milk…the guilt is incredible!) James has always eaten enough to grow and (slowly) gain weight, but we have worked very hard at it. Before he was sick, the most common question asked at our house was, “How did he eat today?”
I know we’ll all adjust to our new home away from home, James included. The uneasiness we feel will fade and be replaced with confidence that we’re in the right place. I know we’ll see our happy, content boy return. We’ll see feeding improve and we’ll see him get stronger and be able to walk again. In my head I know all of these things. In my heart I hate every part of it and can’t wait until I can scoop him up and finally take him home.
My heart aches for you all, but I know my job is to hold a vision of James healthy and strong; eating yummy foods, running in grassy fields, taking big gulps of air, all with a huge smile on his face – same for you and Andy. I will keep holding that vision for you all and know that the day will come. I’m sending much, much love! Kasey
Thank you Kasey. I love the vision you are holding for James and for us. I try hard to stay up-beat and focus only on the positive, but when I see him doing less and less each day it can be hard. I am so comforted knowing you and others are keeping the good thoughts going when I’m feeling weak. I draw so much inspiration from you and Andie.