Four months ago, life looked very different. The house had noise, I made lunches every day, packed Madison’s backpack, argued with her over watching the same videos on YouTubeKids AGAIN or the same episode of AFV that she had watched every morning over the last week at least. I was picking out her clothes, getting her dressed, tying her shoes, brushing her hair, and putting it in a ponytail to keep it out of her face all day. She would be bugging the dog, barely eating her breakfast, and fighting with me about almost everything. Megan would have left for school long ago so it was just us. The drive to school would be lots of talking most mornings, or she would have her iPad, listening to music and singing. Some mornings she was quiet which told me her tummy was hurting. It hurt her a lot in her last days. Her ulcerative colitis was flaring up badly and Brian and I were discussing the most likely surgery to remove her colon soon. She was in pain a lot but somehow smiled and got through each day with a good attitude. You could always tell when she was tired of the pain, though. She wouldn’t be as nice at school and the teachers and I would have that conversation. I would drop her off and watch her joyfully run into class, always the first to arrive because, of course, I’m her mother. Always early. I would go about my day doing normal things just waiting to pick her up and see that big smile. Every time she saw me or her dad it was a big smile and happy greeting as if she hadn’t seen us in days. Driving home was usually the same. She would ask to go to McDonald’s as if she hadn’t just had lunch. I would ask her about her day and she would chatter the whole way home about everything and nothing. I would try to get her to do homework as she rummaged for a snack and got a Dr. Pepper from the garage refrigerator. Her shoes would come off almost immediately and then the house was hers. Toys everywhere, her on her iPad with her headphones on, me telling her to stop bothering the dog, playing texting games with her daddy until Megan then Brian came home greeting Madison with, “HI BUDDY!” I would prep for dinner as Madison grabbed a box of Kraft Macaroni and Cheese out of the pantry and placed it by the stove silently then I would put it back. This would happen at least twice. We would eat, everyone would be doing their thing until bedtime at 8 pm. It wasn’t always easy to convince her to go to bed, but when she was finally up there she would inevitably want a hug, all her favorite toys and blankets, and her nightlight on. I would close her blinds again because she liked to spy on the neighbor, Brian would come in to say good night and as I started to leave and turn off her light, she would say, “Mom, pray for me.” We had our own prayer starter. I created it myself to help prompt her to add anything she wanted to say, but most of the time I prayed. She would try to hurt my hand when I held hers, she would giggle through the prayer or just be quiet with her eyes closed. I would kiss her forehead, tell her I loved her, and leave. Sometimes we would hear her talking or trying to tap a message on the wall between her room and our bedroom closet and we would play along with a smile. There was so much joy, noise, little annoyances that didn’t really matter but were just a part of the Madison experience.
Our new normal is very different. There is no noise. All of the joy has been sucked out of the house. Every morning Megan leaves for school and sends us a text, “Bye.” Brian gets ready for work and leaves, telling me goodbye. I lay in bed in silence longer than I should. I get up and get dressed then pick up Madison in her pineapple urn and take her downstairs to put her in her normal spot where most of our time is spent so she can a part of everything. I don’t do much, just what I can think of doing. Megan comes home and tells me what she wants to tell me about school then she’s in her room doing homework. Brian comes home after I’ve decided what to have for dinner. We all eat when we want. Brian and I watch a show if we feel like it until we’re just done with the day. Brian picks up Madison in her pineapple sometimes saying, “Come on Little Bit” and takes her upstairs to sit in her spot on Brian’s nightstand with Maddie’s Lamby and Spongebob toys.
It’s all so surreal. We cradle her in her urn just like we did when she was an infant. We hold her and fear dropping her. We can’t imagine being in another area of the house without her. It’s all too heartbreaking to think about.
Brian and I spend a lot of time in guilt. We’re her parents so, of course, we do. We can’t help it. Some days are more crushing than others. I’ll always feel like I failed her because I did. There was a moment that night when, for a split second, I almost yelled at Brian that we were taking her to the hospital, but I didn’t when she was suddenly okay, just weak and wanted to lay down. I should’ve demanded that we go in that moment but I selfishly thought we could help her through another stomach bug like all the others. I should’ve been more paranoid, more protective, and had her looked at out of an abundance of caution. That mistake changed our lives. It’s my fault. I knew her best, I knew when she was really feeling bad and when she was just annoyed. I should’ve known how bad this really was. No one will ever convince me this wasn’t my fault and I’ll have to live the rest of my life knowing that I didn’t do everything I could as her mother to protect and help her.
Now we live in this weird existence trying to be good parents to Megan. All I can believe is how I never can be a good mother to her. How can I when I’ve already failed as a mother in the worst way?
All of these feelings are real, dark, and an unfortunate part of the journey to accepting a new normal.