We were so happy ~ Part one.

I was half awake and couldn’t will myself to open my eyes. I wasn’t ready to move my body. I heard little footsteps walking up the stairs and into my room. I still couldn’t open my eyes. My little cherub of a daughter put her face close to mine and whispered, “Maaaawmaaaaaw, it’s a wondooful daaaaayaaaaay!” Before I could respond she said, “The woostuh said, cock-a-doodle-doohoooooooh!” Well, how could I possibly stay in bed then? She had given me the will to move my body, just like that! Imagine having done nothing at all apart from waking up in the morning and already knowing that it was a wonderful day!  It was that very thing that kept me moving forward at a pace that as I look back on it now, seems truly unbelievable

Three years earlier, I was pregnant with that little cherub of a daughter when my husband, Andrew, received a job offer too good to pass up. He was offered a position as a Corporate Chef for a winery.  The move would also land us in a great city not only to raise our family, but it was also a place I’d long imagined living some day.  It was a sweet little town with great opportunities for me professionally as well. After all, the girls wouldn’t be babies forever! The decision seemed obvious. So, at 38 weeks pregnant, me, my 18 month old daughter and husband moved across state. We were thriving!  Andrew was loving his job and I was loving being a momma to my sweet babies. As expected there was opportunity for me. Sooner than expected, I went back to work as an events coordinator for a company who owned multiple wineries. It was ideal in that I could do much of my work from home, needing only to leave the children when we had on site events and when I had meetings with prospective clients. We acclimated quickly and very well. It was a dream! We were beginning to plan our long term future with our family. Things were starting to come together in all of the ways we’d hoped. At the rate we were going, we would likely be able to buy a house within 3 years. We were so happy!

One morning in November, the baby woke in the middle of the night. She was 8 months old and had caught her older sister’s head cold, so sleep wasn’t a thing that week. I went to get her out of her crib and grabbed all of the things I needed to comfort her, including the book “Goodnight Moon” by Margaret Wise Brown. When I got to the page with the “three little bears sitting on chairs”, I realized that I was seeing double. I saw 6 bears in chairs! I rubbed my eyes and tried squinting, which didn’t help much. I chalked it up to being tired. This went on for about a week, but usually resolved after being awake for a couple of hours in the morning. I thought that I was just so tired from having two sick babies, that I was literally seeing double. I mean, the expression came from somewhere, right? A couple of weeks later, it wasn’t resolving and it seemed to be lasting longer throughout the day than before. I was still so incredibly tired though, so I thought it was as simple as that. I was just tired.  Thanksgiving was just a few days away and I had decided if my vision hadn’t improved by the end of the holiday weekend, that I would call my doctor. We had Thanksgiving with our dear neighbors that year. The host happened to be a medical doctor. I told her about what had been going on with my vision and she urged me to call right away on Monday. She suggested calling the eye doctor to rule out anything simple first. I went for my appointment a few days later. The eye doctor could find nothing that would explain my symptoms. He referred me to see a general practice PA. I didn’t have an established physician yet, as we’d so recently moved. I saw the PA a couple of days later. When he heard I had a family history of Parkinsons and chrohns disease, he ordered an urgent MRI. I went in for the MRI 2 days later.

The morning after the MRI, I felt unwell. I was terrifically off balance and my entire head felt pain. Not my head like a headache, but literally my entire head –  as if it had been chopped off. From my face to the back of my neck. I was feeling pins and needles, stabbing pains and burning pains. On top of that I was feeling off balance and dizzy. There was a heaviness in my legs that reminded me of my marathon training days. It was as if I had gone for a long run after taking a break and woke up the next morning to the feeling of having done too much. I walked down the hall of our bedroom after waking up. My husband was at the end of it. I met him there, wrapped my arms around his neck as he held me and whispered in his ear, “baby, there’s something wrong with me.” Tears we’re quietly running down my face. He asked what was wrong but before I could answer, the phone rang. It was the doctor’s office. It was my practitioner. Andrew handed me the phone. The clinic wasn’t even opened yet and he was calling me personally. I was convinced I had a brain tumor. My heart was in my stomach and I was trying to sound even in tone when I said “Good Morning” from my end of the phone, in my most pleasant voice. The doctor informed me that they found multiple lesions in my brain and that it was pretty clear that I had multiple sclerosis. He explained that I’d need to come in that same day if possible for some blood work as well as to schedule another MRI for the spine. He’d sent in a prescription for prednisone that I’d need to start as soon as possible to help slow the progression of the disease and help with the symptoms. He’d also sent my information to the neurology department and they were expecting my call, as I’d need to make an appointment with their office as soon as possible so that we could begin treating the disease. My husband and I sat next to each other in silence for what seemed like forever. It was likely only a couple of minutes. We had an almost 9 month old and a two year old fumbling around and waiting for breakfast so it can’t have been long. We proceeded to do the things we needed to do that day in a robotic way. We could talk more after I actually saw the doctor with all of my questions. In the meantime, he’d go to his demanding job and I’d put on a smile for my babies and love them as best I could while trying to coordinate the last minute childcare I’d need in order to get to the clinic for the various appointments. I’d know better what to do after I got through them, I was sure.

I sat in the waiting room riddled with anxiety, waiting for them to call my name. I was in a trance of my own thoughts, too many to even list here, that the sound of my name almost startled me. I went back to my room and the wait there was even worse. I mostly thought about my girls. The doctor tapped on the door and stepped in. He went over the information we’d discussed over the phone earlier in the morning. He showed me the MRI results and said that it appeared that I’d had the disease for quite some time, as there were several older lesions. He then pointed to the “active” and newer lesions. These were the areas that were causing my current symptoms. The more brightly lit and the larger they were, the more inflamed or the newer they were. It was easy to see. He had ordered a blood test, as the blood will generally also have a marker that indicates a Multiple sclerosis diagnosis. In order to legitimately diagnose M.S., there needs to be 3 diagnostic factors, though as he explained, based on the MRI, there was really no doubt between himself, the radiologist and the neurologist that it was almost certainly M.S. He had also ordered another MRI to be done the following week. This time it was an MRI of the spine. He gave me the numbers to call for the MRI appointment. I needed to contact the billing department as well as the scheduling department. They were expecting my call. The nurse ushered me to the pharmacy which was in the lobby. Thank goodness for this small thing. I wouldn’t have to drive to the pharmacy. One less detail to worry about. I had the prednisone in hand which would hopefully stop the symptoms and slow the progression of disease. They took my blood and I was all set to go home and begin the process of making appointments. I’d need to completely reschedule my entire life for the next couple of weeks. I had a little extra time to think about all of these things while I waited for my childcare provider to pick me up. I wasn’t able to drive myself to the appointment as a result of the vertigo and head pain. I was both grateful and gutted. So glad to have a wonderful person able to help in so many ways, whom I trusted with my children; but also, quietly devastated that I wasn’t able to drive myself. Fiercely independent and schedule oriented, it was difficult for me to let go. It was difficult for me to let go in my mind, at least. It seemed easy for my body. My body had given up for now. It needed a break. It was screaming at me to please give it a break!  My body decided that the choice was no longer mine.

The high dose oral prednisone was working, but as soon as I started to taper down, not only did the symptoms return, but they were worse than before. I began experiencing so much pain in my feet, it was difficult to walk. The doctor decided I should be given I.V. Steroid infusions instead of the oral suspension. I needed to go in daily for 5 days to get these infusions. They made a big difference for me and the symptoms began to subside. Within a few days of finishing the infusions, I began to decline again. Much like the first time I had tapered down with the oral prednisone, I began to feel worse. On Christmas, we tried to celebrate with our sweet young daughters as if all was well. I tried desperately to be positive not only for them, but for all those in our lives. It helped me to be THAT person. The one who looks on the bright side and remains hopeful and positive. I was convinced that this would help to determine a successful path for me in my healing journey. Our Christmas was sweet. We had a darling 9 month old and a 2 year old. How could it be anything but sweet under those circumstances? I was not steady that day. I was feeling weak and was experiencing muscle spasms, neuropathic pain and intermittent vertigo.  Andrew had a tradition of making us eggs benedict for Christmas breakfast.  Mimosa’s were also always a part of our Christmas brunch. I joked with him that I may as well have 2 since I hadn’t even had one and already felt slightly tipsy. Why not let it all loose for the Christmas holiday and forget our troubles? I had half of a mimosa and called it good. After brunch we called the clinic. It was decided that I’d need to be seen the next day. The 26th of December, 2014,  I was told I’d need to do another round of I.V. steroid therapy and that hopefully it would stick this time. The treatments were to begin the following day. My husband still had an incredibly demanding, new job. An important job in terms of his career. We had a 9 month old, a 2 year old, and I still wasn’t able to drive. Now, I needed to figure out how I was going to get to my infusions for the next 5 days and also coordinate childcare. The irony wrapped up in all of that is that at all costs I was told to avoid stress. Anybody who has gone through an unexpected and life changing diagnosis understands how ridiculous that directive is. Being in that situation is inherently stressful.  This is an unavoidable truth.  I cannot tell you how grateful I am that we had the neighbors that we did. We had lived there for less than a year and not for the grace and kindness shown by our friends and neighbors we would not have made it through this ordeal.  I was driven to and picked up from every single appointment by a dear neighbor, so that our nanny could be with the kids without disrupting their schedules. It was all hard enough on the girls as it was. As a result of the infusions, I needed to keep a heparin lock in my arm wrapped with medical tape to secure the tubes. That was a bit scary for Charlotte, my 2 year old. That and the fact that I was obviously sick. I was not the momma she was accustomed to. Before getting sick, I was always high energy. We went outside daily, rain or shine during her first 2 years on earth. Now, I struggled to walk and limped terribly. Everything seemed a laborious chore. I tried to hide that from her, but children know. They always know. One day as I was walking towards the bannister to go downstairs, Charlotte came to me and gently took my hand. She looked up at me with her twinkling, concerned blue eyes and said, “ It ok, mama. I help you!” She was worried. She wanted to take care of me. It made her feel better when she could be a big girl and helper.  As for my Georgia.  My sweet baby. I had to abruptly stop nursing her. Between the MRI contrast given and the medications I needed to follow, nursing was no longer an option. If I had known the last time I would nurse her, would be my last time – our last time – I would have nursed her and held her a little bit longer. Every time she’d reach for me and I had to reject her was absolutely crushing. Heart wrenching. Even writing it now, the grief wells up inside.

3 Comments

  1. Beautifully written. Can not imagine how you managed, except you are a very strong woman. I have a grandson with MS. Chad is 40. Right after his diagnosis, his 2.5 year daughter was diagnosed with diabetes 1. Love ❤️

    Like

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