Pity Party

I’m throwing myself a party. A pity party. There will be plenty of whine. Instead of streamers and balloons, I am going to decorate with all of the most heart-breaking photos that depict Avery’s pain and remind me of all that she has been through. I need to do this. While it most definitely seems masochistic, my hope is that this post will serve as a reminder of the “why.” On days when I question my choices for Avery, and the guilt I feel because of these choices becomes overwhelming, I can look back at all she’s been through and remember why our decision is necessary and why we never want to go back.

I have so many memories related to all of the health issues Avery has had over the years, but one that sticks out is the first time Avery had an IV placed while she was awake. We were inpatient at RUSH and Avery was scheduled for an MRI of her brain the next morning which required anesthesia and therefore she was NPO (nothing by mouth) and needed an IV placed to keep her sugar from dropping overnight. Now, by this point, Avery had had her share of IVs placed, but we were fortunate that all the previous times she was “gassed” first before they placed the line and so she never felt it or was aware that they were placing it. That night there were at least 3 different rounds of nurses who came to try to get access before they called in the PICU nurses who were used to babies with tiny veins and who, after trying many times themselves, finally agreed to let the anesthesiologist place it in the morning as she was being put under. I will never forget the sound of her screaming throughout the entire 90 minutes of them trying off and on, and over and over to find a vein that would take. She was 2 1/2 years old and was just really beginning to talk and I can still hear her begging, “Help me mommy! They’re hurting me. Stop! Stop! Is it done? Are they done? Done? Done?” I can still see her tear-soaked face looking up at me desperate for me to tell her yes. I wasn’t able to numb myself back then and I was sobbing right along with her, my face right on top of hers to block out the sight of the nurses with their needles, the two of us sweating, her from fighting us and me from trying to hold her still. The trauma of that night, although over something seemingly so small, will stay with me forever.

I remember how scared I was handing her off to the OR nurse the morning of her first surgery when she was 6 months old. Although the fear surrounding her surgeries or procedures requiring anesthesia has been replaced with a familiar, almost routine, feeling that comes with experience, the sadness I feel looking at my daughter covered in tubes and wires never goes away. When she first comes out of surgery, before she wakes up and begins her usual angry and agitated return to our world, she looks so helpless and vulnerable. While awake, her frantic attempts to get the IV out right away and the way she lashes out at me or Joe remind me that she is a fighter, but before that, I am painfully aware of how tiny, and sweet and fragile my little girl is. Having not been able to eat since the night before, her stomach is always unusually flat and she looks so thin and frail that it reminds me of how much her little body has been through already and makes me question how much more it can take.

The hardest part of all of this, by far, is watching Avery in pain and not being able to do a single thing about it. It makes me sick to think of all the nights, especially the last 9 months or so where she just swells and swells to the point of being slightly breathless. She cries that she is hungry and wants to eat, but she says she knows her stomach will hurt her immediately afterward. There have been so many nights where I have felt so helpless and hopeless being able to offer nothing more than ibuprofen or tums or a heat pack as she cries from the pain and I watch her struggle to find a comfortable position to lay down in. There are times when she has been so distended that even sitting vertically to go to the bathroom is too much for her and I have to hold her reclining backwards just to relieve the pressure on her abdomen so she can take a full breath. Some days she will stand bent forward, grabbing her stomach like a pregnant women and shuffle slowly holding onto the wall because of the intensity of the pain. Even though I have always known Avery with this extremely distended abdomen, I am almost always in awe of it still to this day. The physics of how she gets around and adapts to her body in that form is pretty incredible, especially on days when she is still very distended but feeling good and able to run and dance with that tummy. Even though she has a diagnosis now that explains her distention, I still look at it and wonder how can her stomach can grow to that extent and what pain she must be in with the way her skin stretches so taunt over her ribs. There is nothing I can do and Avery knows it. In the midst of her pain, she will refuse my attempts to comfort her and yell, “You’re not helping me! You never help me!” She is right. And there is no more desperate feeling in this world than having to stand by and watch your child suffer as you realize the only relief you can provide is your love and the comfort of your arms and you know, sadly, that that isn’t enough.

As loud as her cries of pain can be, it is her silence that is most deafening. The nights when the pain is so intense she just doesn’t have the energy or strength to cry are the hardest. Although there are no tears, I can see the pain in her eyes. As often as her crying can be, it is easy to become distracted by the noise and forget the reason behind it. Her pain is more visible on the days she is silent because, having nothing to distract me, I am forced to really look at her, and it breaks me. Maybe it’s not even the pain that is the hardest to take, but the sadness and defeat I see in her eyes. That scares me. And the ache in my heart is overwhelming.

Avery lives her life on the sidelines. It is a combination both of physical limitations as well as the weight of a lifetime of emotional baggage that holds her back. She has limited strength and stamina. Her nutritional status, due to this condition, leaves her with significant fatigue and a very noticeable lack of energy. As long as I can remember, Avery has been a very sedentary kid, her only regular activities being reading and laying on the couch. I can’t tell you how many birthdays, Christmas mornings, and other holidays she has simply been too tired or in too much pain to open gifts or even show excitement for all the other activities that most children look forward to. She very rarely plays at the park or with other kids. She will literally sit off to the side and watch as the kids chase and laugh and play with each other. Most days, she just lays in the stroller and doesn’t seem to pay attention to the activity around her, but recently she has been asking us to adjust her stroller so that she can see what the kids are doing. We ask if she wants to join in and she says, “No, I don’t feel good.” I don’t know what’s harder, watching her be completely checked out and showing no interest at all, or seeing that she wants to join the kids but simply can’t because of her pain and fatigue. There are times when we play as a family at home and Avery will literally lay right in the middle of the floor where we are running and playing, because although she can’t physically join us, she wants to be included in our game. I have to set up little “beds” on floors wherever I am in the house so that she can be near me as I go about doing our daily activities and feel like she’s a part of the family.

Whenever I am out with Avery at an appointment or somewhere where she has to be quiet for long periods of time, I am complimented on what a well-behaved child I have. I hate when I receive that compliment. Where they see obedient, I see pain and fatigue. It is yet another reminder of how very different her life is compared to other children. I often hear about kids who are fighting cancer or are otherwise very sick and people remark about how they still get up and manage to show interest in and play with their toys and smile and maintain their bright personalities. That is so far from the reality of Avery’s life and where many, who don’t know her well, think that she just must be shy and quiet around strangers, she is most often very quiet and subdued at home too.

Our whole family dynamic is affected by Avery’s illness. We plan our day around how she is feeling and we know to avoid making plans after dinner because she will be in too much pain to do much more than color or maybe play a board game. Mady is like an only child, only worse, because her mom is constantly being pulled from her either physically to take Avery to appointments and care for her, or mentally being distracted by all the chaos of coordinating care for a sick child. I am Mady’s only playmate most days which has me in a constant state of flux, moving from rubbing Avery’s stomach on the couch to playing soccer with Mady in the living room and then back to care for Avery and on and on. I feel torn, wanting to be what each girl needs, but always feeling like someone is left out. Mady is more caregiver than sister to Avery most days, and as sweet as it is to see her care so deeply for her sister, it is also heart-breaking. Sadly, a big part of Mady’s childhood has also been taken from her by her sisters chronic medical problems and I will always feel badly that I couldn’t shelter her from all of this.

Play dates are hard. I remember last summer at my sister’s house watching the kids playing in their backyard kiddie pool. All of the “cousins” were climbing in and out of the pool, splashing and having fun. Avery sat on my lap. That has happened on so many occasions that it usually doesn’t bother me like it used to, however, that day I watched as my nieces played together and it made me sad. They are sisters, just like my girls. Seeing them together, the way sisters are supposed to interact, it surprised me at how fast I felt the tears well up in my eyes. It broke my heart for both my girls. I sat there watching my nieces play and all I could think was that this is what my girls deserve, too. It amazes me how these every day things can trigger such a wealth of emotions in me, sometimes things that I never really knew existed inside my heart until I feel them rolling down my cheeks.

I think about what life must be like for her. She has known pain her entire life. She is constantly being forced to endure invasive and painful testing and procedures. Her mom, who should be protecting her, is the one holding her forcefully down while these things are done to her. She spends most of her time laying around waiting for the day to be over and asking over and over if it is time for bed. She sits by and watches her entire family swim and play at water parks, go on rides at amusement parks, have dance parties, and chase each other with nerf guns. And all the while she just waits patiently (most of the time) for us to finish our fun. The questions that circle my mind are painful. What does she think when she watches us? How does she feel about living this life? Is it too late to reverse the effects of all of this on her childhood? Will she always carry this pain with her, both physical and emotional?

It is hard for me to relive these memories and to open my heart to allow you to see and understand my pain. It leaves me exposed and vulnerable, two things you can’t be when trying to be strong and tough to fight for the best life for your daughter. I live most days with my heart covered by a wall of armor built from the years of watching Avery suffer. It is important for me, right now, to remember and feel that pain again. The pain is my why. Why I will continue to find help for Avery. Why I must make what seems like an impossible choice for her. Why I will be able to look back at all of this and finally be at peace with our choice.