Acceptance

Coming to terms with, learning to live with, and becoming resigned to. These are all ways to describe the word acceptance. Reading the title of this blog, I am sure that many of you were expecting to read about how I have finally made peace with the reality of our situation. I haven’t. And I think that Avery will be all the better for it. I have come to hate that word over the course of the last six months as this life of doctors and hospital stays and medical tests has become more and more familiar to us. I distinctly remember the first time the word was used in regards to Avery. I was on the phone with my mom telling her how exhausted I was dealing with all of Avery’s medical issues and everything we face on a daily basis. I was feeling burned out and groaned, “I just want my old life back. I can’t wait until everything gets back to normal.” Expecting to hear reassurance and consolation that everything would, in fact, return to normal, my mom’s response startled me. With carefully measured words, she said it. “Maybe it’s time to accept that this is going to be your new life now.” Her words, although said with nothing but love and good intentions, hurt. Maybe it was because these thoughts already lingered somewhere deep down where I didn’t have to acknowledge it and her words forced me to deal with them, but whatever the reason, I was left feeling hollowed out and hopeless.

After carefully considering her words for awhile, I decided we all might be better off if I stopped fighting so hard to get back to life before surgery and started living in this new reality. Acceptance. But I couldn’t. My mind kept coming back to the words of the Serenity Prayer:

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Being a permanent staple in the form of a magnet on the side of my parents fridge, I must have read the words to this prayer hundreds of times throughout my life. While always finding this prayer thought-provoking and intriguing, it has never been more relevant in my life than it is now. The wisdom to know the difference. This is the part that always catches me. How would I know if I should accept this? At what point would I realize that this may be something I cannot change?

Turns out the answer to these questions was there all along. I saw the answer as I watched silent tears roll down my daughters pained face. I felt the answer as I rubbed her large, swollen stomach trying to let her know that I would take the pain from her if I could. I heard the answer when her teacher came to me and said she hadn’t seen Avery smile in more than a month. Of course I know the answer and, most likely knew all along, that I can not, will not accept this.

I cannot accept her simply surviving. Since the beginning of October, Avery’s health has been declining. She unexpectedly started vomiting in the morning a couple days per week. At first, we mistakenly thought it may just be a stomach bug, but when it kept happening week after week, we knew it was something more. When it first started, we would keep Avery home from school after she would vomit, but as it persisted, we decided we couldn’t allow her to keep missing so much school if this was just going to be her new normal. It has become routine now in the morning when Avery says she feels sick, Mady knows to grab the bucket and I get the paper towels and we are almost always able to contain the vomit and keep her and her clothes clean so that as soon as she’s done we can get her on the bus and off to school. Her sodiums have always fluctuated and this new vomiting certainly hasn’t helped anything. She looks chronically pale and weak. We have been called quite a few times to come get her from school because she is too fatigued or sick or in too much pain to stay there. The people who see her on a regular basis have voiced concern at her quick decline over the last two months and during a meeting at her school last week we discussed ways just to get Avery through the day such as increasing her use of a stroller in place of walking and setting a goal of just 3 minutes of participation in gym class as tolerated. Although I live, breathe, and feel her pain and sadness every day, having other people notice and worry about her makes it achingly real.

And the pain. I cannot accept the pain. Avery’s pain has increased the last few months and she is taking Tylenol and Ibuprofen every day, often around the clock. She has no energy when she gets home from school and no interest in doing anything other than laying on the couch with a heat pack and watching a movie. A very good day for her lately will let her do a puzzle or color after dinner, but most times if there is something she needs to get done she tells us that she better get it done before dinner or she won’t be able to do it at all because of how bad her distention gets after she eats. Her quality of life is worse than it has ever been because she is dealing with all of her “attachments” and the interference they cause, in addition to her pain and distention. We have been documenting her distention with photos and have been able to compare “before and after” pictures to show her doctors how little all this has actually done for her. She has been waking up out of her sleep at night in pain which never used to happen. More recently, there have been a couple of times when she was just writhing in pain, trying to find a position that would relieve her pain and suffering for hours before, thankfully, her little body exhausted itself to sleep. At her motility appointment last month, we were happy when they finally agreed that we need to do something about her pain. They referred us to their pain management clinic. I was filled with hope thinking that maybe we would finally be able to control some of her pain and she could enjoy Christmas for the first time since she was a baby. Hope is a dangerous thing and I paid the price for allowing myself to feel it when it abruptly vanished. The next available appointment wasn’t until February. February?!? That was 3 months away. I immediately started to cry being powerless to do anything about the months-long wait list and knowing that Avery would have to suffer through yet another holiday season.

 

As luck would have it, Avery developed another PICC line infection on Thanksgiving. The silver lining of this latest medical adventure was that I requested a pain consult while we were inpatient. Not only did they come see her, but they also moved her appointment up to December 11. While there, however, due to her small size and motility issues all they could prescribe at that time was lidocaine patches. It was almost comical. The patches didn’t begin to cover her abdomen and the parts of her stomach that were covered by the patches didn’t feel any better. Then came the TENS unit which is a little machine with electrodes that send electrical sensations to the body in hopes of disrupting the pain signals and reducing her sensitivity to pain. Shockingly (no pun intended), that has also been ineffective. Despite being irritated that we couldn’t try “real” medicine, I was grateful to have other options available to offer Avery even if it was only a psychological comfort for her. We just saw the pain team outpatient on Monday and they prescribed her gabapentin for nerve pain. They are also going to try to get approval from her motility specialist to give low doses of the pain medication tramadol as well. I am thankful that her pain is finally being taken seriously, but part of me feels like we are just putting a bandaid on the problem instead of working to actually fix it.

As far as “fixing” the problem goes, Avery was put under last Wednesday to get an EGD (looks at esophagus, stomach and duodenum) with full thickness biopsies to see if there is something at the subcellular level that is malfunctioning. She also had four injections of botox around her pylorus which was done in hopes of widening the area where the stomach meets the small bowel to see if it would stop the vomiting. They were hoping that it was something as simple as her pylorus spasming that was causing this new symptom, and we were hopeful too when she didn’t vomit the day after the procedure. The day after that, she started vomiting again.

My instincts told me that this pylorus issue was not the answer to her problems, so I wasn’t all that surprised or upset about it not working. The part that really bothered me was something her doctor said after coming out of the OR last week. Although he never spoke the words, I heard the implied message. Acceptance. There’s that word again. What he actually said would sound professional and responsible to most people. He told us that he was going to be here to “nutritionally support” her. Sounds good, right? All I heard was that there was nothing else he could do or try to help resolve the issue and he was simply ready to start focusing on just keeping her alive. I heard that he was out of ideas, out of options and content to just work on putting out the fires instead of trying to find who is lighting the matches. I understand that nutrition is extremely important, especially for kids, but I don’t want to give up yet. I want more. Selfishly, I want more than her to just be alive. I want her to live.

As mentally draining as it is to all those involved, I need to stay in this uncomfortable state of unease, and restlessness, and dissatisfaction. If I allow myself to find the peace that we all want, it would mean I have given up and accepted that this is the life Avery is meant to live. It would mean that I am giving her doctors permission to stop searching for answers to resolve her problems and instead allow them to simply manage her symptoms. That is why I must find the courage to change the things I can. I need to fight, even when it feels like others have given up. I need to reject the idea that this is our new normal. I need to keep pushing for answers and never become complacent. I know that this is not it for Avery. It can’t be. There is so much more out there for her. I want so much more for her. And as long as I am never at peace with this life and never allow myself to accept  that she will always be sick, always be in pain, we will get her there.