the night call

I arose from a deep sleep upon hearing my little Josiah softly ask me to come check his heart. I quickly pressed the return call button on the monitor to let him know I was on my way. Without hesitation I was up rushing to his room. Josiah immediately whispered he had dreamt his heart had stopped. Looking into his deep brown beautiful scared eyes I placed my hand gently on is chest. He appeared fine and the beats that I felt seemed some what quickened but not alarming. He asked if he could press the record button on his heart monitor to get a recording, in case his heart was acting up again. I smiled at him telling him yes that was a good idea and that maybe we should send the reading out. Some what relieved he had no symptoms of discomfort and given the fact he had awoken from what most likely was a disturbing dream, I felt myself lesson in concern. But still very heart broken that fear invaded my sons life in so many ways.

Life watch responded fast. Josiah's reading was not out of normal range but did show some increase in pattern. To put both Josiah and myself at ease I decided I would sleep on the recliner next to his bed. I laid a wake for the next several hours listening to his breathing and wondering how frightening this all must be for him. How frightened I felt. Hating how helpless it left me. Also wishing Josiah did not have to live with this added fear on top of living with Duchenne. The roller coaster ride was on again. Only now I had no idea if we were going up or down.

He did not awake anymore that night and in the morning Josiah did not make any comments about his dream. I was tired and still very upset that this new symptom had entered his world. Still though, very pleased and thankful the night before did not turn out to be an emergency episode. I watched as he played with his legos later that morning. Smiling and busying himself with building the cars 2 kit I had recently purchased for him. He seemed no different.

Today sadly though I felt control slipping from us, from me. In spite of every ounce of strength I put forth, Duchenne was gaining. We were losing and it teared me inside to admit. A friend once told me after her son graduated from high school at the age of 18 she felt sadness overwhelm her. While for most young people it was a time for a new adventure, for a child with Duchenne it had a different meaning.

I walked into the room where my Cody was playing a video game. In a little more than a month my Cody would turn 18. Having grown up with Duchenne I felt and understood what my friend meant. A child with Duchenne rarely made it pass the early 2OS. Today I was facing that same fear. The same fear my parents also had too. Unlike my friend though I would see Duchenne take both my younger sons. A reality I could not ignore today. Perhaps it was the new heart monitor making it all seem so much closer. What I did know was unlike my friend we now had cardiac issues attach itself to our already complicated lives.

From another part of the house I could hear Josiah sweetly calling me. Reminding me it was time to send another cardiac reading in. As if by some magic it was the tech on the other end of Life Watch that gave me my hope again. The readings were found to all be in normal range, very good for Josiah, and music to my ears. As if sensing my concern she reassured me every reading so far has been in normal range. I could not help but embrace my sons after hanging up the phone. At least for today I could help Josiah let go of his fear. I could reassure him his heart was beating strong. And possibly for just today the roller coaster ride was at a halt.

its anything but

All I can say is, I put on my bikini and its complicated. Why you ask- it fits perfect, but I am the fading old. I like my bikini but I am not sure it likes me back. LOL. I want to take it out and show it the world but I am not sure my friends approve.

Over due with my writing and with a very serious attempt at exploring the finishing touches of my book, I once again find myself lost in the midst of events surrounding me.

New relationships have been bubbling up all around. I am so excited for some of my friends and family at finding someone to engage in heart felt feelings with. I have been priviledged with romantic news and announcements. My insight to the romantic happenings surrounding me leave me so much more aware, that, yes perhaps, Love is in the air for some. However drama is even more heightened for others. I've become more and more aware of the people declaring they are in a relationship and "its complicated". This lines popularity has flourished since the Movie "Its complicated". A romantic comedy starring Meryl Streep and Alec Baldwin, who after having been divorced for 8 years flirt with a short lived affair between them. The ending thankfully puts Meryl Streeps love interest toward pursuing a HEALTHY relationship with Steve Martin.

I cannot help but wonder though, the meaning behind all the postings I see lately of, in a relationship and "Its complicated". Are this many people sleeping with their exes but secretly wanting another? Really, did I miss something in my long dating life where it becomes difficult to say to someone I like you and want to see just you. Somehow after our grade school days of passing love notes around- some of us have graduated from "Do you like me" check here yes or no to the popular "ITS COMPLICATED". I find it even more perplexing to see that some relationships existing are over ten years and still complicated.

What is this new relationship status? When did our feelings for someone become so widely complicated? Hoping and waiting for him or her to change is ridiculous. You need to open your eyes. If you are keeping those special feelings a secret it can not be all that good. Those of us in Love want to shout it from roof top not hide it in a locked room. Check the box already and move on. Girlfriends and boyfriends those break ups and arguments are telling you something. It is not good. Lets be honest if it is bringing out the "complicated" announcement, that might be a red flag, if you are hoping for more.

As for me I plan to work out this bikini relationship soon. Neither one of us enjoying the "Its complicated" status and need to commit to each other or move on. Tankini is on stand by.

The sun was just beginning to make its appearance. Shades of pink, yellow and orange hovered above the horizon as I looked out over the lake. The morning sky was beautiful and life on the lake was beginning to awake. A family of ducks swirled across the rippling water. I was distracted from the beauty as I heard a small voice call out to me.

It had been two weeks since Josiah's spinal surgery. He was now home in my care recovering. I was just beginning to feel comfortable moving him around and the night before I had actually manged to move him myself for the first time.

Surgery had went well, though Josiah had lost quite a bit of blood. His incision seemed to be healing good and he was asking for pain meds less often. Turning him every few hours was still very important and like a clock he seemed to wake up letting me know it was time. Sleeping next to his bed on a recliner had become my new resting place, making it easier for me to be there for him.

I rolled Josiah over slowly to his side. Swiftly I worked positioning pillows to aide in keeping his body as straight as possible. Tucking him in again I bent in to give him a light kiss on his forehead. Josiah was already drifting back to sleep by the time I curled back into the recliner.

I was so happy to have the surgery behind us. The care that was needed now to meet his needs left me most days drained. But we were managing. With the help of my sister Marie, my brother in-law Bill and my eldest son Zach, we had a system in play that worked.

It seemed I hardly had enough time to shut my eyes and my Josiah was calling for me again.

Overwhelmed with emotions, I search frantically for some way to resist the surrender to the panic and fear I feel growing with in me. Apprehension, provoked by my Josiahs' upcoming spinal surgery. The ominous anger that consumed me years ago when my two younger sons were first diagnosed with DMD once again enervate my strength. Duchenne, again, paralyzing me in my fear.


The months and weeks of awaiting Josiahs' surgery date has now turned into days. As we approach his surgery date I feel my existence tested more than ever. For the first time in seven years I feel the travail of this life threatening disease and my abilities of single parenting. Having never questioned my capabilities to care for my two sons with DMD alone before, I am lost to this new sense of insecurity.

In my heart I am paralyzed with daunting fear I may some way fail in my attempts to be all he needs. In my mind my I know I have no choice but to be the strength he will rely on.

Path ways

I looked out the window today at the heart shaped path a friend had plowed for me the weekend before. The lake descending from my back yard now frozen was bare, except for my heart. I followed the long path from my knee deep snowed covered yard, leading to the shoreline. Then continued, stretching out to the corridor of plowed snow, several yards onto the lake. Alone in my thoughts I let my mind take me back in time. Back to the days when I myself shoveled paths throughout our back yard, before we moved to this lake. Days when shoveling was all that was required of me to allow my two youngest sons the capability to wander through the snow covered yard.

Recalling the laughter and fun we shared together, I smiled to myself. Cody and Josiah would follow each other through the winding maze I created. Cautiously raising each foot at every step. Along the twisting isles they would stop and giggle at the snow creatures I sculpted for their delight. Then somewhere in the pathway they would find me collapsed. Laying, in the snow resting, from all the shoveling. Watching and waiting for them, filled with great joy that I was able to create for them a winter wonderland. Overwhelmed with hope that somehow walking would not be lost. Together, laughing we would tumble in the snow until our fingers and toes would begin to feel the slight sting from the cold.

Looking out today where my friend had plowed, I realized getting my sons out on to the lake would be a task that I could not manage on my own. A mission, even if possible, that would most certainly require the enlisting of more help than just my sister Marie who has become my right hand lately. Scanning the lake and then back to the heart shaped trail, I wondered if my sons ever thought about those memories. The days when they were able to walk in the snow. The winters when going out doors merely required some assistance with dressing and help with maneuvering the stairs. The days when lifting was hardly a concern, a time when when the pathway seemed easier and more accessible. Moments when being a single parent did not seem to challenge my own physical strength so much.

I knew Cody and Josiah remembered walking. It still was not all that long ago. We had just reminisced the day before, recalling memories of walking in the old house. we talked about the phase 2 PTC drug trial and the 6 minute walk test Josiah had no problem completing. A Beautiful visual of them out in the snow flashed before me. I envisioned the two of them walking as they had in the past following a groomed winter trail, smiling and walking.

Winter had now become somewhat trying on us and often required more assistance than what I was able to provide alone, but we were managing. Only two weeks before we participated in our community out door Winter Fest. Trudging through snow with electric wheelchairs, bundled to soften the effects of a typical wind chill for Minnesota we went dog sledding and enjoyed a sleigh ride. With the help of family we were hardy Minnesotans enjoying winter.

I stared at my carved heart. Its symbolic meaning calling to me. Today might not be the day I get my sons out on the lake to play in the snow. This most likely was not going to be the day I would see some actual difference that PTC was making in my sons lives. All the energy that caring for them demanded of me did not change. We would still have to prepare ourselves and face our fears of Josias' upcoming spinal fusion surgery. But, I was ready to give DMD another fight.I was ready to accept the new challenges that lay ahead. Most importantly, we had been given back an extra glimmer of hope. We were back on PTC. It looked promising. Cody and Josiah were tolerating the medication very well. We would embark on this next phase of our journey with DMD, hoping to be following the pathway to help cure Duchenne.

Lego athletes

Today I decided to stop wondering what it might be like to see Cody shoot a basket during a basket ball game. Or see Josiah hit a baseball and run like the wind to get on base. In stead I took a deep breath and sat down be side my sons as they put together a new Lego kit. I leaned in between them fitting myself in the tiny space between their wheeled chairs. Happily they made efforts to pull themselves a few inches over to allow me space enough to be apart of their fun. Cody eagerly showed me the progress he had made on the building he had created. Josiah quietly worked on the new kit the tooth fairy had left him the night before. I looked around the beautiful Lego room I had created for them. Buildings and vehicles that they had put together lined the shelves. This was the world my sons knew. This was one of their past times they had grown to love.

Marveling at the patience it took to work their weakening hands and arms I leaned over to give them both a little kiss on the head. I watched Josiah look at the directions and search for the correct piece. Cody chatted on about how fast Josiah worked and how proud he was for him. Together we sat, away from the outside world lost in Lego land. My sons were happy, they accepted this was what they could do. I wanted to be at peace with that acceptance. I wanted to embrace all the enjoyment they felt building with Legos. I felt happy that I could give them a place to be creative, a place that they could shine and display there skills. I was so very proud of the abilities they possessed with such little strength. It pained me though knowing that this could and most likely would someday become an impossible task for them. Our friends and relatives pushed and cheered to help their children become athletes and dancers. The world I knew loved stronger and faster. The world we lived in did not know the magnitude of strength it took for Josiah or Cody to build a small structure. Or the concentration it took for either of them to follow instructions. My two younger sons would never have the athletic abilities my friends shared about their own children. They would struggle more each day to use their dying muscles. Inside I was horrified at what was inevitably to come. I knew thinking past today would however take the joy we held on to at this moment away. So Legos was our now. I picked up some blocks asking Cody if I could help make his wall on his house stronger. He smiled at me saying "mom you are good at finding ways to make something be stronger." Hugging him I said "sometimes being strong is all I know".

impact

On any given day someone somewhere is going that extra step to make a difference. Being on the side that so desperately reaches out for the compassion of others, I can not say thank you enough for the generosity of those who give of themselves. Several months ago I spent the day with my two sons afflicted with Duchenne Muscular Dystrophy, along with my sister Marie, helping out at a Lock-up for MDA. Our job was to greet and tell our story to the representatives who came to make donations for MDA. Volunteering for this cause has become a big part of our world and speaking on its behalf is very near and dear to our hearts. While it is not always very easy for my sons Josiah and Cody to attend some events they willingly accompany me on request.

This day at the lock-up was a special time for us to share our story because we are involved personally in research. For the first time in a long time I felt I could talk about Duchenne with hope. My boys sat in their chairs next to me, quiet and feeling quite shy while I spoke about The PTC study my sons were enrolled in. PTC laboratories had enlisted several young boys to part take in a on going study using the drug "Ataluren". Research reports were indicating that Ataluren was showing signs of slowing the progression of Duchenne and in several cases some strength was being maintained. My sons both showed some healthy muscle tissue to be present, which told us something was deffinately happening with in their bodies. We had hope given back to us and that alone gave me the courage and energy to let anyone who cared to listen, learn that research was vital to my sons lives.

Both my sons being extremely shy stayed close to my side remaining very quiet. On occassion responding verbally to hellos or compliments but mostly smiling and nodding through out the day. Cody seemed to be relieved when I finally had no one left new to speak to and announced we could go. We graciously thanked all those who came out to help cure Duchenne. It was not until we headed home that I realized the real impact my openess to speak had. The two people who had the most to gain from hearing me talk were my sons. As I loaded my boys in our van, Cody simply said thank you mom. Surprised I asked why. He told me for not letting him give up on hope.

That night I sat in my room alone thinking about research, the study, my fears of allowing my sons - for the most part to be part of an experiment for this new drug. I thought about my desperation and anger I feel daily from watching my sons muscles waste away. I also thought about hope. I knew we had come a long way in research. Science understood so much more about this disease. But yet a cure for Duchenne still does not exist. However, I was happy my son had hope.

It is now several months later. Much has passed since that day. Josiah has undergone major spinal surgery and has had to relearn to hold his head up and sit unsupported. We continue to move forward even though at times there have been some set backs. I look at my sons and know deep with them is a drive and determination to fight. I believe that we are getting closer to cure and will not give up on my sons. But for the most part I still remain a skeptic to some degree and a hard judge to pass regarding this new drug. I cling to the hope that it is helping. When those low moments happen and we struggle to make sense of why, I turn to my boys. Watching them continue to hold on to their hope lets me know I am doing all the right things.