Collateral Damage

Collateral Damage

With any hard-fought war, there is pain and suffering and destruction unintentionally inflicted upon the areas surrounding, but not directly on the battlefield. “Collateral damage,” they call it. There has been so much in the way of collateral damage when it comes to Avery’s health journey, but what I’m referring to isn’t so much a thing as it is a person. That’s right, I’m talking about Mady. This is the girl that made me a mom. She had my heart the minute I heard hers. I lived every moment devoted to her for the first two years and 3 days of her life. And then came Avery. As it goes when any new sibling is added to a family, it took Mady a while to adjust to the fact that she could no longer have my undivided attention. I told myself that I would find a balance with time, and that the gap would eventually close as the kids got older and started becoming interested in similar things. I could picture myself with the girls playing outside, riding bikes, and going to the park. That’s the way things go, I was told. But what happens when that attention never goes back to being divided equally? What if that new child continues to require more and more attention as the years go on and the medical complications and diagnoses add up? What is it like to grow up living life on the sidelines as the sibling of a medically complex child?

At the age of eight, Mady has seen more than most people will experience in a lifetime. The trauma that I struggle with daily as an adult is the same trauma that is the backdrop of Mady’s childhood. It is a thought that comes up throughout the day, and each time I am reminded of this, my chest tightens with guilt and grief. That guilt taunts me, reminding me that people only get one childhood. I have so much regret and I am so terribly sorry that these are the memories Mady will have as she grows up.

In dealing with this the past few years, I have received plenty of opinions and ideas about the consequences of growing up alongside a sick sibling from friends, family, child-life specialists and therapists. My mind swirls with all of these opinions:

It will make her stronger…

Maybe she will be a doctor someday…

                                                          If she doesn’t find a healthy way to cope she could develop eating disorders or self-harming behaviors…

She will have so much compassion for others who are struggling…

                    These are the kinds of experiences that can cause long term emotional damage to a child if things aren’t handled the right way…

…and I struggle every day to do the right thing, make the right call, cause the least harm.

Some advise to have frequent, open discussions with Mady to allow her to express her feelings and process all that she’s seen, while others believe it’s in her best interest to sweep it all under the rug and focus on moving on. Smiles are best. Mady is of the latter mindset. She would be content to never bring up or discuss any of the trauma she has witnessed throughout all of this. I think that she hides it very well, and most people have no idea that there is a lot of pain and fear and anxiety that lies beneath her out-going, happy personality. I know that she hides it because she is scared to upset me. It breaks my heart and makes me hate myself as a mother for being so weak and not instilling confidence in her that I am strong enough to shoulder her pain too. In thinking back about all that she has witnessed, I am amazed that she still finds happiness and fun in life, and I often find myself admiring her strength and resiliency.

Choices. This is a hard one for me. There have been many situations where I feel like I am having to make a choice, pick one kid, let the other down. It broke my heart last fall when Mady came home from school with a fever. We got her medicine and blankets and set her on the couch to rest. An hour later, the school called to let me know that Avery had a fever as well. As Avery’s fever started to climb, so did Mady’s, but, sadly, my worry was for Avery. I ran back and forth to both girls, bringing them what they needed and quickly packed up our suitcases to head to the hospital. It took all of my strength not to break down as I pulled a sick, feverish, crying Mady out of my car on the way to the hospital and handed her over to my parents to take home with them. Of course, she just wanted her mama like any kid (or adult) that is sick and feels awful. The image of her face pleading with me to stay, or take her with, is haunting. I made a choice that day. I know it, and, regretfully, she knows it too.

Mady was there during that horrible seizure in July to witness her sister being carried out by paramedics. As I yelled for Joe to call 911, she started crying in the kitchen. I could hear her cries but I couldn’t compel myself to break away from Avery to comfort her. My sister was there, so she was able to try to comfort Mady while the rest of us surrounded Avery. That wasn’t the case for her most recent seizure in December. It was just Mady and I who were with Avery when we first noticed the tremor in her hands spread to her whole body, then watched as her eyes rolled back in her head and she began convulsing. Joe was upstairs in the shower and Mady ran up there to get him to help. Once Joe was downstairs and the two of us were furiously trying to replace her sodium, Mady ran up to her room and started sobbing. She was pacing upstairs between her room and the front bedroom where she could see the ambulance pull up. I think she came down at some point to see how Avery was and I could see that her face was red and wet with tears. I was pushing salt water into Avery’s g-tube and didn’t stop to comfort her or give her a quick, reassuring hug. That, too, was a choice I made, though it didn’t feel like one at the time. Since that day, Mady has said very little about the whole experience. The only thing she tells me is that she was upstairs crying and screaming and we didn’t know because we were helping Avery. I can’t begin to imagine what a lonely, terrifying feeling it must have been to have to cope all on her own, wondering if her sister was going to be ok.

There have been several more of these dramatic moments where I feel completely torn, trying to meet the needs of both of my kids and always failing, but what is, by far, the hardest is the day to day stuff that tears me in two. Most evenings, Avery is sick and wants to just lay on the couch and watch TV, whereas Mady is full of energy, bouncing around the house wanting me to play with her. Of course, I try my best to split my time between them, but Avery almost always gets more attention as I try to help her pain with medications, patches, heat packs, venting, and on and on. I have to prepare Avery’s TPN every night which takes more time away from Mady. While these things feel like necessities to me, they are viewed by Mady, and can technically be classified, as choices.

I think of and worry about Mady all the time. When I am away from her, I panic inside about what this is doing to Mady, what it’s doing to our relationship. After this last admission, I was talking to Mady when I got home and told her that I am sorry and feel bad that we spent so much time apart. She responded that I should feel bad for Avery because she is always in pain. I told Mady that while Avery’s body is in pain and we can see it on the outside, I know that her heart is in pain, and that is just as important as Avery’s pain. She seemed genuinely surprised when I told her I think about her heart pain often and it makes me sad that she didn’t know my heart hurts for her as much as her sister. Watching the movie “Wonder,” it was hard for me to watch the section from Via’s point of view because it is a heart-wrenching and eye-opening look from the perspective of a person living with a sick sibling. The part that stuck with me is the scene where Via is on the beach with her grandma and her grandma tells her that Via is her favorite. Surprised, Via asks, “What about Auggie (her brother)?” The grandma says she loves Auggie but he has so many people praying for him and worrying and caring about him. She tells Via that she will be that person for her. It rings so true, because I am so often asked how Avery is doing and the focus of many conversations is her health, but I am not asked nearly as much about how Mady is. We are guilty of this ourselves. Often at the end of the night, Joe will call me from work and say, “I just wanted to see how Avery is doing. How was her day?” I totally get it and it is completely understandable and unintentional, but I’m sure that Mady notices this, and it hurts. Mady loves when she can be the center of attention (and being a middle child, I can relate) and does what she can to make sure she is seen. I occasionally take her out for an hour or two while Avery naps on the weekends and Mady loves every second of it, but I know that it isn’t enough to make up for all the times I “choose” Avery.

One of the hardest aspects for me as a mom, is to see how all of this is slowly draining the joy from Mady’s childhood. Anxiety has become a big part of her life, though it’s not always obvious to others. Ever since the seizures, anytime Avery is very tired, or hard to awaken, Mady immediately gets nervous and will do just about anything to elicit a response from her sister. If Avery doesn’t answer her, Mady will pinch her nose or touch her in the face. If Avery responds, even with irritation, Mady is relieved. She worries about things that no child should have to think about. She questions everything and wants to learn the details of Avery’s care so that she can help, and while that is incredibly sweet, it is more responsibility than she should be undertaking at this age.

There is so much I wish I could change about her childhood. This isn’t the life I planned for her. I grew up with very little to worry about, and with me and my sisters in perfect health. I don’t really know and can’t say exactly what Mady’s perspective on her life is, but I can only imagine the pain and confusion and resentment and fear that she must live with every day. I know that there isn’t much I can do to fix the situation we are in, but I wish that Mady could know my heart, see inside my mind. Though, externally, she sees me taking care of all of Avery’s medical needs every day, I want her to know that I am thinking of her too, and feel tremendous guilt that so much of my day revolves around her sister. I wish she could see inside my mind and my heart so she would know:

That I am incredibly proud of how strong she is dealing with what life brings.

That I would give her all my time and love and attention if I could.

That every day I am away from her and in the hospital with Avery, I am thinking of and worrying about her.

That I admire what an amazing and protective and caring sister she is to Avery.

That if I could, I would take away all of her worry and make her feel safe to express any and all emotions without fear of consequence.

That she is the best helper I could ask for, and does it all without being asked.

That, many days, she is the light and the laughter that makes it all better.

My wish for Mady is that she always knows how much she is loved and feels just as special and taken care of as Avery. I hope she continues to make sure speaks up and is heard amidst the chaos of our lives. I want her to grow up knowing that while Avery’s illness is part of all of our lives, it doesn’t have to define or limit how we live. I need her to know like she isn’t just “Avery’s sister”. She is Mady. And that is more than enough.