I try to remember that what people think about me is none of my business, but I spend way too much time doing the opposite. From what my house looks like with toys strewn everywhere to how much I spend on lunch or from how my kids behave in public to giving enough warning when changing lanes on the interstate, I worry that I am not measuring up to other’s standards. Someone asked me the other day about my dog’s breed and I immediately thought that she was passive aggressively telling me that I needed to give him more attention because of his shaggy hair.
I struggle with what others might say about how I am dealing with my daughter Ellie and all of the stress that goes along with having her around. I can see the confused look on people’s faces when my husband or I sometimes irreverently talk about her and how difficult she is, but we wouldn’t be able to make it through this without the humor that brought the two of us together in the first place. While she is truly the perfect addition to our family, there are many tangible and intangible accessories that come along with her medically fragile and Down Syndrome diagnoses. Just the bare minimum of what she needs to stay alive can be overwhelming at times.
I think about how some people probably don’t understand how I can share so much of our private life so publicly. I was so worried about her scars and feeding tube frightening others that, early on, I told Ben he had to keep a shirt on her at all times.
She is in the hospital recovering from pneumonia right now. We took her in with what we thought was a respiratory virus that we just couldn’t handle at home. She has been in ICU for three weeks and was sedated, on a ventilator for two of those weeks.
In ICU, she has had a nurse in the room with her for 24 hours a day. It is nice because we know she is very well taken care of when we are not at the hospital. While there is only so much standing over her bed, wringing our hands and worrying that we can do, I still leave with the feeling that others at the hospital might think poorly of us when Ben and I go home and spend some time with our 2-year-old son Jack.
She is in school now, which I am sure is where she caught the virus. Some parents keep their kids like Ellie home for the first year to avoid the situation we are in now. Ben and I weighed our options. We talked to doctors about the best course for her. Ultimately, we decided that immersing her in therapy for her physical, occupational and speech issues early would be more beneficial to her life than keeping her home. She has progressed so much over the past few months and can nearly sit up on her own. That’s a big deal for a baby who spent nearly half of her life flat in a hospital bed and yet I feel the need to defend our decision with everyone who asks me how she got sick.
Each hospital stay is progressively harder. In the beginning, she was too little to know a lot about what was happening around her, and she had never been home so I am not sure she even really knew that she was ours. Jack was also younger. He did not miss us much because he was with his grandparents and that was a real treat. Now, Ellie is more aware and gets scared when we are not around. Jack loves his grandparents, but after spending the past year in a rotation with all of them he really misses the routine he has when he is home with mom and dad. It gets harder and harder to leave him to go visit Ellie because he just doesn’t understand.
I worry what the kids are thinking about how we are handling this balance. I don’t want Jack to ever think that his sister takes a higher spot in our heart just because she needs so much of our time. It is painful to think that we may make him feel that way when we leave him to go to the hospital while he tugs on our pants or stands in front of the door in his attempts to make us stay.
Leaving Ellie by herself to face such big challenges is painful too. She was sedated for so long that she is having a tough time coming out from under the drugs. She has to wean off of them and has to suffer through withdrawals. Just like in adults, there are physical and psychological effects that come with each wean. She can be hot, sweaty, unable to settle, have stomach trouble and changes to hear heart rate all while not sleeping and hallucinating. She was recently awake for 48 hours but has finally started to get a little rest at night. I don’t want her to ever feel abandoned or alone when she wakes up at the hospital and we are not there.
I know that what works for my family may not work for other families and by sharing so much of what is happening in our lives, I am opening myself up for criticism. It is scary to think about what others might have to say. There is some recent news in Arkansas about an abortion bill the state Senate has passed that has been sent to the House. The bill puts a ban on abortions if they are sought because of a Down Syndrome diagnosis. I made the mistake of reading the comments on some of these news articles. It is easy to present as an expert on an issue, share bad information or even create fear by posting comments on the internet without ever having to have real knowledge on or experience in the topic.
I have heard before that what triggers a person about someone else is actually a fear that person holds himself. I am reminded every day that I cannot make decisions based on my fears, but, man, I want to. It is too easy to run off course when I let my fear of what others are thinking drive my direction instead of my own internal moral compass. Saying “no” is not one of my favorite things to do. I can become paralyzed by the fear of what might happen or of disappointing others. I know that when I start feeling like I am caged in, I am most likely thinking about making a decision that will go against what is best just because it is easier. Usually that means easier than just saying no.
“Would things be easier if there was a right way/ Honey, there is no right way” I hear Hozier’s “Something New” on repeat in my head these days. My mother-in-law also gave me this advice, in different words, one particularly stressful night right after Ellie was born when I really needed to hear it. She said, “There is no wrong answer. No one can fault you for what you do in this situation.” It gave me permission to let it all go and not worry about who is watching and judging. It is especially nice to remember and say to the critical voice in my own head.