A single tear rolled silently down my face as I watched the emergency room team ardently search for a vein to connect IV lines into. Numbers on the monitors, recording my sons vitals, sent a surge of fear throughout my entire body. The EMT's eyes met mine, telling me I had every right to feel fear. I searched the room for a face that could give me some reinforcement of hope, but instead I saw something else. It almost seemed as though none of this could be real. As though, it was a bad dream, that I could not awake from. I stood holding the limp hand of my eldest son, watching in a frozen state of panic, as his swollen blood shot eyes rolled back into his head, leaving just a glimmer of white visible. His young, strong physique now collapsed. He laid curled in a half fetus position, unable to straighten from bouts of pain that ripped through his dehydrated body. Softly I whispered to my son the only words that mattered right then. How much I loved him and needed him, how much his brothers loved and needed him.
I watched for what seemed like hours unable to move as his blood pressure continued to slowly drop. This was my first born I was now watching, clinging to life. My strong healthy son who was not living with a fatal disease. My son who did not have Duchenne Muscular Dystrophy. Zach the son who had always been my light and support. The son I turned to at times for strength while Duchenne viciously attacked his brothers. My heart ached and my mind raced wildly, trying to make sense of what was happening to him now.
Briefly, Zach opened his eyes and looked at me, his face twisted as he winced in severe pain. Slowly in a weak quiet voice through sobs he told me, "he was sorry". His eyes rolled back exposing only the whites again, his body going limp once more. My mind screamed for him. I pleaded softly for him to hang in there, to be strong, for me. Holding his hand in mine I also silently begged God to not take him. I was breaking, feeling as though parts of me were dying. I was alone with my fear and begging for God's mercy. Watching helplessly as my eldest son fought for his very life, right before my eyes.
I tried to stay as much as possible out of the ER staff's way, while they worked on Zach. Periodically exchanging glances with his father, my ex. This was the second time in a month we had spent time together in concern and worry for our children. This time it was a serious matter of life and death that had brought us together. While Zach's father questioned every medical staff and procedure I held Zach's hand. His hand, that I had no intention of letting go until he was stable.
We arrived at the ER sometime around 5am, It was noon before Zach was stable enough to be moved to ICU. His blood pressure had risen just enough to safely start pain meds through his IV. Our wait had now only just begun. We were told several times Zach was lucky. We were lucky. Very lucky he got to the hospital when he did. What Zach had thought was only the flu and tried to let runs its course, turned out to be so much more and worsened very fast. Zach had contracted Bacterial Strep cal Meningitis.
After hours and some reassurance he was holding on, I walked to the waiting room with Zach's father to allow Zach's girl friend to have a moment alone with him. She had patiently sat waiting in the ER lobby, hoping and praying for the last several hours, while we hovered over our son. In over 9 years I had not heard my ex ever ask how I was doing. Not even 4 years ago when My youngest Josiah underwent a grueling 4 hour spinal fusion surgery. Somehow now, here it was. Compassion from him, meant for me. How was I, he wanted to know. I had to think for a moment. I really had no idea. My eldest son was critically ill, fighting an infection running throughout his entire body. We were now in the stage of waiting to hear if there would be any permanent damage and if the antibiotics were working. My two younger sons with a terminal illness were at home scared to death for their big brother. Wondering when they would see mom again. I had no idea if they had been infected. I was feeling overwhelmed with making arrangements to have them cared for while I was away. How was I? I was drained, tired, literally breaking inside, angry and hurt. I ached for something I did not have in my life. Something I did not want from him. Not now.
Tears filled his eyes as he looked at me. For the first time in a very long time I saw that he truly still cared. We stood looking at each other. Arms hanging at our sides. Every ounce of energy I had left belonged to my children. I would find time later to cry my tears. I smiled at him assuring him I was fine, telling him Zach needed us now and nothing else mattered.
It pleases me with over whelming joy, to say, Zach has since made a complete recovery. But the memory of seeing him so ill haunts me still. It took everything I had in me, to not completely break. I knew I needed to be strong, to be there for Zach, and still take care of Josiah and Cody. None of it would have been possible, without my wonderful supportive sister Marie, and her husband Bill. Who have always been there for us, no matter what.
However it scares me beyond anything imaginable. This is the fate to come with my Josiah and Cody. This is not the end of ER visits and quite literally life and death for us-for Josiah and Cody. Three days after Zach was released from the hospital as an outpatient in the agreement he would return for daily infusions, I was back to the ER with Cody. Its never a good sign when the hospital ER staff recognizes the family name. I had several more days spent holding Codys hand while in the hospital as he fought a virus, and also making sure arrangements were made to help Zach out. Luckily Cody's illness was not exactly life threatening. On the second night of Codys hospital stay a young male nurse introduced himself to me as part of the staff that would be helping Cody that particular night. With out even asking, this young man brought me a cot to sleep on. A pair of pajamas to sleep in and a bag of toiletries. I watched silently as he made the cot up for me. Slowly he held the pajamas out to me and said "mom, I watched you most of the day, you need rest". He was right. It had been a long difficult day, with Cody experiencing side effects, from a narcotic given to him for pain. But the night from hell, was yet to come. Cody had an even more adverse reaction, to yet another drug he was given for pain relief. It broke my very spirit to see him suffer even more. Curled up like a fetus, facing the wall, I let my tears silently and freely fall. There was nothing any of us could do, except wait for this drug too also pass through his system.
I realized something that night, that it was while I was holding Zach's hand when I first felt as though the life I once knew was truly and slowly slipping away. That has, in many ways really challenged my thoughts and me. Leaving me questioning what really matters in my life. How do I find away to rejoice for those around me, while slowly my heart breaks for the losses Josiah and Cody face daily?
I celebrated this Christmas feeling absolutely joyful that I was able to share this Holy time with all three of my sons at home. Giving thanks for the tremendous support we are blessed with. Very thankful for all the prayers and love that was sent to us. In all honesty inside though, it was a very difficult and emotional time for me to be with my sisters and their families. I love them all dearly, and yet I find myself in deep sadness, because they know and live a life I will never know. Some of you will not ever get this. Perhaps that is your own Blessing. But to those of us (You) who truly understand parenting a sick child, single parenting, loosing a loved one, letting go of a dream, or my favorite( the big) feeling- joy in sorrow (perhaps now I have reached more of you)- you will understand. I am at present still fumbling through jarred emotions that leave me feeling a bit crippled and lost. As though I am with out strength and unable to move beyond them. As much as I dislike some of what has been awaken in me I can not deny its existence. I can not ignore how utterly different and disconnected I feel at times even from my sisters and their families.
I am not searching for any answers. Perhaps just the occasional comfort, from knowing, that somehow all of this suffering, especially that of which, I see in my wonderful loving DMD families, has somehow made a difference in the world -our worlds-somehow, somewhere. That if nothing else, the daily battle alone of living with Musclar Dystrophy is enough to cause a change in hearts. To bring out LOVE when it is needed most.
Thursday, December 26, 2013
Laying next to my mother, listening to her shallow breathing, I felt a small flutter with in my womb. I knew I carried life inside of me and was over joyed with the very thought. It was just a few days before Christmas, and I wanted desperately to share my joyful news with her. It had been days since we had even seen her beautiful hazel eyes open, or flutter once. The Hospice team had alerted us as her time to leave us draws near we would notice changes in her. Within the last several days she had become almost unresponsive to our touch and movement around her. Needing to feel her presence more I snuggled in closer, to her warm motionless body. She had grown so fragile since the cancer had taken over. I felt as though my own petite size was almost amazon next to her.
I was expecting my second child and was not yet showing, but the fatigue and morning sickness were a daily reminder to me of my own present delicate condition. Laying my head next to where my Mother rested hers, I watched my first born as he danced around her bedroom, excitedly singing Christmas carols with all the sweetness of his young voice. It brought me great joy that the spirit of Christmas bubbled with in him. I embraced this opportunity to rest and be entertained. Wishing ardently to be absorbed into the joy this magical season brought to him. I was just nearing the end of my first trimester. Fear, left behind after a miscarriage in a previous pregnancy cautioned me in the timing of my announcement, that I was indeed with child. I smiled as my eyes followed Zach my then three year old first born, as he happily moved around the room. His innocence and joy almost illuminating. He did not question anymore why Grandma slept constantly. Almost as though he simply accepted that things were what they were and that was fine. All he knew was that it was getting closer to Santa's coming, and that gave him reason to celebrate. My news that he would be a big brother could wait for another time. A time when we could embrace life together.
Zach slowly disappeared to gather up some more furry stuff animals to join in his celebration. I seized the moment to then softly whisper to my Mom, I was expecting. She laid silently next to me. I snuggled even closer. Hoping to have some sign she had heard me. She never responded. I may never know whether she actually heard me, but just knowing I was given the chance to tell her filled me with a sort of teary peace.
The advent season is once again amongst us. As I begin to prepare for another Christmas season with my family I find myself recalling more recently passed holiday seasons that have also presented me with a few challenging heartfelt moments. Moments that at times left me feeling lost in fear and sorrow. Clinging to hope and prayer. It was just 2 Christmases ago when my two oldest sons both became ill and had to be hospitalized. First my eldest son Zach contracted a very serious case of bacterial Meningitis. The days that he spent in ICU fighting for his life is etched in my memory for ever . As we watched Zach slowly become stable enough to be moved from ICU to a hospital room my second son Cody became ill with a virus and was also admitted to the same hospital for treatment. They both recovered in time to celebrate Christmas at home.
Today all my sons continue to be doing amazingly well. While Zach has recovered remarkably, Duchennes symptoms have progressed considerably, in Cody and also my youngest son Josiah. But even with that, for now, I happily can claim they all continue to thrive. Even with all the challenges that Cody and Josiah are faced with daily. But as I recall those special holidays I am flooded once again with emotion. No longer a sadness dwelling in me. But now, a realization of how precious memories are and how triumphant love is. I am still reminded of the fear that swept over me as I searched inward years ago to find courage, to be the strength that was needed of me for my family. During those extreme times that demanded so much from me, also came some very real self examining of my life, hopes, and needs.
We did manage to celebrate Christmas 20 years ago for the last time with my Mother. Gathered around her bed, we all sat softly singing Christmas carols through quiet tears. We took turns opening up small gifts in an effort to maintain the ritual of giving, for our children's sake. Its a Christmas I will always cherish, a time very close to my heart and a time that I turn back too from time to time when I am in a difficult place. A special time when I relied heavily on love and hope to help me move past my pain. A time that I shared with my amazing sisters. A time where we were given the gift to spend one last Christmas with our mother together. My mother never regained consciousness and passed away three days later. Just as she took her last breath a single tear rolled slowly down her cheek. She held on for those last days we know for us. To give us a gift, one last Christmas together. Yes, Christmas is a most magical time. A time for giving and loving and making memories. A special time to tell the ones you hold dear in your heart that you love them. A season that gives us hope and the chance to rejoice with LOVE. Love, Peace and Joy to you all this Holiday Season .