I left off Part 1 by describing our response to Piper's diagnosis, but didn't delve into the course her disease took so I will try to put that into words here. Not for the sake of detailing her medical history, but to try to share both what our journey has looked like and how God has blessed us through her personality and tenacity! I may repeat some elements of the story that I have already posted about but if I do, please overlook the duplicity for the sake of continuity!
From day one Jordan and I prayed Piper would be strong and healthy. We also prayed that if she would follow another course, she would be strong and healthy for as long as possible; if she was to be sick, we prayed that her disease course would be swift and that God would be gentle and merciful. We shouldn't be surprised that He is answering so completely. Piper missed some of her physical milestones by about 6 months, but she was meeting all other milestones and exceeding many of the social ones. She seemed far more socially capable than her age would have suggested she should be and her favourite pastimes were ones that also seemed more appropriate for a child older than she. She would sit in her car seat from 5 months and read books to herself. I didn't go anywhere without a bag of books. She would turn the pages by herself and preferred books to just about anything. I remember driving Peyton to school one morning and Piper was starting to squirm. I asked her if she wanted a book and she reached her hand out to the side of her car seat, hand open and waiting! I smile now just remembering how proud I was in that moment. Silly mom, but those moments where you realize how capable your child is and that they understand you on many levels just continually left me in awe. She exceeded our expectations in so many ways!
When we received Piper's diagnosis on September 13, 2011, the first week was surreal. It felt like a fulcrum point, where we sat on this fine tip and had to decide which way to go. Do we fall apart? Do we yell and scream? Do we cry? Or do we rejoice over the privilege that we have known this little girl and that she has been well for so long? Do we dance more, laugh more and live more? The decisions we had to make were so simple and yet so difficult. A parent should never have to hear that they will not be able to dream about their child's future. That they will not be able to see them grow up. We worked through a lot of emotions that week and the groundwork we laid has helped ease the difficulty of the journey. With Drew, we were constantly grieving a new loss. The onset of each new symptom and the uncertainty of his diagnosis left us in a state that varied dramatically between confusion and hope and tossed us back and forth frequently. With Piper, we had a diagnosis and though the course couldn't be certain, we knew it was terminal according to the medical world. In that first week with Piper, we could grieve everything that we grieved over months with Drew. Ug. I don't want to have a week like that ever again. It was hard to keep moving and not to be hyper-vigilant with Piper. It's like finding out you have a disease but not knowing when your symptoms will start, and trying to live like you don't so you don't just stop living then!
We tried not to look for symptoms and attempted to treat Piper as normal as possible. For the most part it was not too difficult, but her diagnosis hung over our heads, if not in our conscious states, in our subconscious states. I found myself unable to plan for her future. I could not go buy clothes for her in any size but the one she was in. Where others would be planning for the next season and buying clothes on sale for next season, I was thinking, "What outfit do I want to make sure she gets to wear?" I longed to dream about braiding her hair and putting it into ponytails, but wouldn't allow myself that luxury. Instead I made bows like crazy for little wisps and there were very few days she didn't have some sort of bow to hold her little sweeps of hair. We knew that sleep and nutrition were important for her so we tried to keep on top of these but not become too protective because we knew it would only feed anxiety. So many times I had to remind myself that if she was going to get sick that it would only be a matter of time anyway, regardless of what I did, in order to allow myself the freedom to live and move in a day without fearing that I might do something to cause her symptoms to start. It really came down to living in the moment, not allowing room for any anxiety. I told myself daily, "All I have to do is love Piper. If I just focus on loving her, I will be able to handle any moment. I will be able to make the right decision in that moment because I love her." That was the best way not to fear her future, or any crises that might occur. I would be able to cope with them as they came in that moment, because my love would provide what was best for her in that situation. I hope I can take this practice forward as it served to richen my life and my experience of her so much!
There were some early signs of the disease such as inability to gain weight, low muscle tone (which led to those crazy splits!), and some missed physical milestones, such as sitting, crawling, etc but none of these required treatment. There were other things that occasionally made us nervous but we had to determine if they were just normal baby things. There was nothing to do but wait until something showed up that we could treat. Jordan and I had determined from the beginning that Piper's course would be different. Our goal was her comfort instead of treatment with a hope to cure. Here we deviated drastically from the course we followed with Drew. There would be no investigation, no trial treatments, as few drug switches as possible and as few interventions as possible. We knew there was still no cure, and not even a remote possibility for treatment on the horizon. We had not given up hope for a miracle but we knew medically there would be little that could be done.
Piper surpassed our expectations physically as she passed month after month, 5 months beyond the time when Drew began to show symptoms. By 12 months, she was learning how to scoot. She had the cutest commando-crawl! She could get just about anywhere but would go slowly and intentionally. You could tell it took a lot of work, but her determination exceeded her physical capability and off she went! At 13 months, she decided it was time to sit on her own and those adorable splits became part of our day. Every time she wanted to sit, she would spread her legs wide and push up to sitting, and vice-versa when she wanted to go somewhere. She tired more quickly than most children her age and I would find her laying her head on the ground to rest after moving a few meters. I don't think there was a single time she would travel to some destination around the house where I didn't find myself rooting for her, wanting to both cheer for her and to do it for her. I knew I couldn't do it for her and that letting her exercise like that would possibly extend the lifespan of the good mitochondria she had, but it was so hard to watch her work so hard! The first time I went in after her nap and found her sitting up I nearly bounded out of my skin to the crib and jumped with excitement and pride, clapping the whole way! She must have wondered what she had done to deserve such a response... what's up with this lady??? I cannot begin to describe what it was like to parent her, but it was constantly a source of joy and parental pride. Talk about celebrating accomplishments! Oh, I can feel the joy just thinking about it and my heart swells. What a treasure she has been! And lest I allow any to think Peyton was left by the wayside, I have to say that I enjoyed him more this last year too!
We hadn't told Peyton about Piper yet, thinking we would tell him when it seemed she was getting closer to exhibiting a visible symptom. We tried to prepare him in other ways by having conversations about Heaven, about God's amazing love and providence, and about how our lives may take different paths than we want them to sometimes. I don't know if there was really any way to prepare him. When we made it to March without any problematic symptoms we found ourselves in two places of thought at the same time. We were aware our world could change in a moment and found ourselves wondering when it might begin. Would it be in the middle of the night? In the pause of a day? In the bustle of activity? But as time continued to pass event free, we began to wonder if it might be possible that we could have years with her. Whatever the case, she was good now and we wanted to seize every moment. We decided at the last minute to take a trip to Vancouver Island, BC, for Peyton's spring break. It wasn't far away, only a one hour flight, and it was close to good health care if we needed it for any reason. She was doing so well it seemed reasonable. We thought it would be a great way to relax as a family and our real motive was to try to create a memorable family experience as it could possibly be the last one we could share. We also planned to tell Peyton then, in a place where we could surround him with love and support without any other distractions. Ah. Hindsight. But no regrets.
We arrived in BC on Sunday, March 25, before lunch. Piper had been a great little traveller. There was nothing unusual that would have given us cause for concern. Peyton was so excited to get there. We got to the condo and unpacked while the kids played on the floor together. Piper took a nap and we decided to go for a walk when she woke up. The condo we were staying at is right on a cove, and near a little recreational airstrip/marina. We loaded the kids up and went out to enjoy a beautiful sunny afternoon, one of the most remarkable days we have ever enjoyed in BC. Piper was in her element. She didn't let one detail of the walk escape her notice. Every little plane that took off or arrived, every dog that walked by and every bike that rolled by us gained her attention. We stopped by a little park to play and she seemed to revel in the experience, while Peyton ran in circles trying everything at least 3 times. I took Piper a little further to see the cove from a different view and in search of spring flowers. We found the most beautiful yellow flowers blooming in some brambles off the path. Beauty in unlikely spots. She refused to sit back and relax in the stroller, she had to sit forward, on the edge of her seat the whole time. I can't describe how she could be both eager and yet peaceful at the same time, but her mood that day was contagious. What an incredible memory. Peyton and Jordan spent almost an hour walking the beach while Piper and I explored life! Amazing.
When we got back to the condo, we made a quick trip to the grocery store and then back to the dinnertime routine of trying to feed Piper something she wouldn't want to eat or wouldn't eat enough of. After her normal hour in the high chair and at least 10 different foods, I figured she had eaten enough so I let her out to play for a few moments while I cleaned up. We got the kids ready for bed and I went to put Piper to bed. I dressed her in her jammies and after cuddles and prayers put her to bed. Not unexpectedly, she protested. New location, long day, new smells, lots of new experiences in her day, strange sounds -- who wouldn't have a hard time settling? I didn't find it hard to cuddle her to sleep at all. After she fell asleep I put her in the playpen. There was nothing unusual. My love tank was full from a great cuddle. After an hour, she was awake again, crying for mommy. She had been teething so I figured it must have been her teeth bothering her that woke her and went in to cuddle her again. It was not unusual for her to wake up once or twice before our bedtime, but part of me thought it was strange that she seemed like she was sobbing when I went in because she hadn't been crying hard or for longer than a minute before I went in. Looking back, she might have been having some seizure movement. The thought crossed my mind that the movement I felt could be something of the kind, so I held her longer and put my senses to work. Was there anything unusual? Any strange movements? Anything new? Just the lightest of sobs. And only for moments. Easily explainable. The mom in me wanted to attribute it to normal baby reactions. The Drew-shaped parent in me was not so easily settled. What if? I didn't want to overreact so I held her for longer than usual trying to settle my uneasiness and make sure it wasn't anything to be alarmed about. It stopped after moments so it could have been sobbing. She fell asleep and I held her for at least 1/2 hour until she was deeply asleep and then I reluctantly put her back to bed. I went out to read a bit longer and only a short time passed when Jordan and I heard a strange ticking sound. What was that? Where is it coming from? We were only a room away, but we had the monitor on to make sure we could hear her. Jordan and I realized at the same time that it was coming from the monitor. Was there something ticking in the other room or was it the monitor making that sound? Seconds of thought. Then a flash of fear. Oh no. If it was Piper, that was not a normal sound. I ran in the other room. Sound - unusual. Where? It was her. I was feeling in the dark. What am I feeling? No! She felt strange. Realization! Seconds passed. Before I had even confirmed my fear, before the lights were on, but after life had paused, I heard myself yelling, "Jordan!" Seconds. He knew. He called 911 while I held onto Piper as if I could stop time, stop reality. I couldn't put her down. I needed her close. Needed her to know I was here. That I was trying to do everything in my power to help her.
The ambulance was there within minutes. Piper and I were off. Starting on a journey I had hoped would never become reality. There was never a moment where I was scared somehow - Someone greater had already begun to work. He had been preparing us for a long time and it quickly became apparent to Jordan and I that He was putting so many things in place to make the best of the situation.
Life changed that night. Again. What would the path look like? We would be climbing a mountain blindfolded, waiting for guidance for most every step. Some of the path would be smooth, but some would be steep and bumpy, and most certainly every step would require the assistance of a Guide who could see more than we were able to. We are still climbing this mountain today and while there are challenging parts of the climb, there are also many amazing views from this vantage point. We have our sad moments, but we also have moments of comfort, of joy, of peace and even of happiness. It is a rainbow of emotions - there is no black and white here.
I will try to pick the story up from here later, but I want to go cuddle with Piper some more. Piper continues to amaze us and sends our emotions into a spin regularly. We shared a wonderful night with her last night. It seemed as if she was going to put her dancing shoes on Sunday morning but she rallied again and had a very calm day all day yesterday. She enjoyed cuddles of love from many of us and last night Peyton asked if he could snuggle with her while he was going to sleep. Why would we say no to that request? We decided it was worth it to arrange her limp body next to his for some much needed snuggles. He fell asleep as close to her as he could get it. We thought we might move her to her own bed after he fell asleep but they were both so peaceful that we didn't dare separate them. I snuggled in around her and fell asleep breathing her in. Jordan stayed up for a while, checking in occasionally to make sure all was well, exerting his protective love. After a while, he joined us too. (Thank goodness for king size beds!) We all slept deeply, even if some of us slept in a state that was listening for the slightest change in Piper's comfort. I woke at 6:30 and spent an hour watching my family sleep, constantly rearranging themselves within each others' space. What a treasure! I will value this memory for a long time.
Piper is very weak now and can only move her hand with quite a lot of effort. She does not open her eyes any more, but she is still somehow aware of us it seems. I try to listen for changes in her breathing that might indicate how comfortable she is, but this is a language I am not proficient in! She is very comfortable as far as we can tell and we are doing everything in our power to make sure we are meeting her needs both for emotional and physical comfort. Please pray that we will know the right things to do for her at the right moment. I pray her little soul is full from our love and full of comfort from knowing God's nearness. Thank you all for your prayers!