I love Christmas time. Actually, I love all holidays where my family gathers together. I am drawn into the joy of wanting to celebrate the ritual -of thanking each other for the time we share together. Deepening the bonds that hold us tightly connected in our hearts. Sharing with my loved ones memories we have made together, praising God for all he has given us. Hoping to to share in spreading the peace and joy that was meant for us all.
So it is Christmas that offers me the most opportunity to rejoice. Yet it is this same magical season that finds me desperately needing and wanting. Yearning to rejoice in something, anything, I have gained, but tormented by remembering what I have lost. Delighted, I have family that shares, with love and admiration for my sons. Secretly still though, hiding my sorrow. So with much work I put to practice mastering the skill of feeling JOY IN SORROW. It is Christmas, and I rejoice that I am so blessed to have my sons with me. Happiness flooding me, because, also once again my sisters and their families join us in celebrating. Pleased beyond words, that I am able to be surrounded with love and share all this with my sons. But some what Saddened, that a Christmas lost, has even entered my mind. Alone in thought, facing realistic realization of what the future holds, in the darkest corners of my mind. Also feeling somewhat angry that this is a fact in my world and in my sons world. Feeling also that I must state-Absolutely not needing to hear some unsympathetic remark that there is hope, from a fragment of a human being.
So I watch as Cody struggles to lift his fork to his mouth while we feast and also fight to hide my tears as Josiah is in need of assistance to help him rip off the wrapping paper from his gifts. My eyes follow my niece and nephew as they move so freely about passing out the gifts. Rejoicing they are here with us, but remembering a Christmas not to long ago, when it was my own child under the tree pulling out a present to pass around. Wanting it to be my sons joining my nieces and nephews as they run to go out side and play on the icy lake. Feeling sad that when my beautiful niece Kayla asked if Josiah and Cody could join them I had to decline, because I was limited in my own physical capabilities. I simply could not safely maneuver them down the icy hill leading to the lake let alone help them through the snow. So I embrace the joy I feel as my sons accept playing with Legos.
I watch in awe of the glory that surrounds me. Love filling me as my nephew Blake kisses my sons, his cousins good night on the forehead then, makes time to cuddle by me. Holding captive the warm feeling I have as out of town friends take time to spend with us. Graciously, accepting whatever accommodations I can give them, just happy to be able spend the night. Embracing all the merriment brought to my home, by loving family and friends. Making new memories of another Christmas
Hoping that the joy I see in my sisters eyes, as they celebrate with their husbands, might some day be in mine. Shyly, watching as they toast Christmas cheer with a kiss. Wanting desperately, to know that kind of love they share together. Yes, it is Christmas, soon to be a New Year and I celebrate. For a split moment I wonder how I appear to them. Holding my sons in my arms, laughing, smiling, and hoping that I am hiding the fear, the sorrow, and the loss I feel. Wishing that the emotions pulling at me now would vanish, or somehow for just a mere second, leave me to feel anything other than sorrow and joy at the same time- for just once.
We celebrate a joyous Holy Holiday. Me beaming when we attend Christmas eve mass where, My eldest son plays his violin. So proud, as I sit, alone, amongst my sisters and their Husbands in our pew. Wishing the church was remotely accessible, to accommodate Cody and Josiah. Thinking back to a time when I too had someone special next to me, along with my two younger children, as Zach played for the service. This year feeling thrilled, when my overnight guests teenage son agreed to adorn my Santa suit and make a surprise appearance outside our back door, to give my boys more Christmas excitement.
Somehow just now I realize, not from venting, but by my writing, sharing from my heart, I begin to see- it doesn't matter to me anymore how or why these feelings are coming to me-Just that I am blessed to have them and share them. What ever JOY I can find, I will take it. Run with it. Though I may shed tears to find it-I embrace it just the same.
As only God can do, the timing (his timing) was perfect- I walked in on Cody today, scooting down the hallway in his desk chair heading to the family room from his bedroom across the house. He looked up at me and said "let me do it myself mom." I stepped back and watched him scoot across our rambler, tears of joy running down my face. ( yes joy with sorrow still) But so intended for me. Joy that I shared with Cody. I in my human state of mind of course wished I had someone else to share that instant of a moment with other than just Cody. But I am learning- this was something God intended for me, just me. Perhaps because I too in some obscure way am special.
It is the Christmas season and a New year approaches. My thoughts and prayers are with so many of my DMD friends that are also struggling at this time with something. I pray that you all will be surrounded by love and joy, And that you will always find strength especially when you need it most. MERRY CHRISTMAS and HAPPY NEW YEAR!!!
Sunday, December 30, 2012
Saturday, December 1, 2012
There was not a trace of snow to be found, as I scanned the courtyard. No matter, I thought to myself, as we watched a sleigh with two reindeer attached pull up in front of us. Eagerly, my two younger sons Josiah and Cody waited at my sides. Amazingly along the sides of the sleds runners, were wheels. I smiled as I explained to Josiah, that this was exactly how Santa's sleigh must be, so he could visit warmer climates that did not ever get snow. Excited we approached the sled that harnessed Donner and Blitzen. Cheerfully we were informed that the reindeer were a bit anxious themselves and on a ride earlier, had attempted to speed up there pace. Warning us we could feel a bit of a jerk, should they decide to gain speed again. However, they would do their best to keep the sled grounded and not let us take off in flight. Josiah's beautiful brown eyes widened as he smiled- the mere thought of this undoubtedly sounded utterly fantastic. Flying through the air just seemed to be in their blood-we joked together.
I sized the sleigh up along with my brother in-law Bill, who had graciously agreed to accompany us today, along with his wife, my sister Marie. We are so blessed, with both of them always lovingly and eager to assist us, whenever possible. Lifting my sons high enough to place them inside the sleigh was our only posing problem. As if on Que, and not letting us fret for a moment, two men approached us offering to help load both of my sons. With in seconds it seemed we were all comfortably seated covered with a blanket and off on our journey.
Our ride was wonderful, and it was the first time my sons had ever been in a real open winter sleigh. Having reindeer pull it made our experience even more festive, with the Holiday spirit seeming to be all around us. It did not matter to us nor the reindeer that there was no snow to be found anywhere. Relaxing during the ride I had decided it was a most pleasant joyous way to share with my sons the beginning of the 25 days of Christmas.
It is this magical season, where joyous events can occur and often brings out the warmest welcomes, filling us with the wonder and awe of the season. At the end of the ride as I lifted my Josiah in my arms-(while still in the open sleigh)- to lower him into the waiting arms of a kind stranger, that instantly filled my heart with the magic of the season. As I stood holding Josiah, like Mary may have held Jesus on that first night, and welcomed strangers that came to adore her infant son, I could not help but feel joy, that this was all made special for my sons. This stranger carefully listened to my instructions, and with waiting arms embraced my youngest. I watched as he carefully placed Josiah back in his waiting wheelchair. Then swiftly, he turned around to offer me his hand to help assist me in getting down.
It is not always easy for me to ask for help on this arduous journey with my sons. However, I try to not let my pride prevent me from accepting a helping hand when ever offered. For I know, often I am giving back by allowing others to experience the joy in helping and giving of themselves. In this Christmas season as I reflect on the good Blessings we have received by the generosity of so many, I give thanks to our Lord for allowing me to see and feel Joy in Sorrow.
I sized the sleigh up along with my brother in-law Bill, who had graciously agreed to accompany us today, along with his wife, my sister Marie. We are so blessed, with both of them always lovingly and eager to assist us, whenever possible. Lifting my sons high enough to place them inside the sleigh was our only posing problem. As if on Que, and not letting us fret for a moment, two men approached us offering to help load both of my sons. With in seconds it seemed we were all comfortably seated covered with a blanket and off on our journey.
Our ride was wonderful, and it was the first time my sons had ever been in a real open winter sleigh. Having reindeer pull it made our experience even more festive, with the Holiday spirit seeming to be all around us. It did not matter to us nor the reindeer that there was no snow to be found anywhere. Relaxing during the ride I had decided it was a most pleasant joyous way to share with my sons the beginning of the 25 days of Christmas.
It is this magical season, where joyous events can occur and often brings out the warmest welcomes, filling us with the wonder and awe of the season. At the end of the ride as I lifted my Josiah in my arms-(while still in the open sleigh)- to lower him into the waiting arms of a kind stranger, that instantly filled my heart with the magic of the season. As I stood holding Josiah, like Mary may have held Jesus on that first night, and welcomed strangers that came to adore her infant son, I could not help but feel joy, that this was all made special for my sons. This stranger carefully listened to my instructions, and with waiting arms embraced my youngest. I watched as he carefully placed Josiah back in his waiting wheelchair. Then swiftly, he turned around to offer me his hand to help assist me in getting down.
It is not always easy for me to ask for help on this arduous journey with my sons. However, I try to not let my pride prevent me from accepting a helping hand when ever offered. For I know, often I am giving back by allowing others to experience the joy in helping and giving of themselves. In this Christmas season as I reflect on the good Blessings we have received by the generosity of so many, I give thanks to our Lord for allowing me to see and feel Joy in Sorrow.
Sunday, October 7, 2012
I found myself tonight looking for soft music to help set the mood to help me write. While I wanted something inspiring I also wanted it to be soothing. After playing several of my favorite popular pop hits -and still no flow of thought, I decided to try a more spiritual approach. My search ended when I came a across Phillip Phillips "Home". How fitting I thought, given the weekends course of events.
I listened to his beautiful strong voice and moving lyrics. He definitely was one of my favorite male recording artist. His words reached inside of me giving me much more than I imagined to think about.
I reminisced momentarily about dinner out tonight with my youngest son Josiah. The uneasiness he felt from a near by table as they occasionally looked at him and the approach I decided to take to help him overcome his uncomfortableness. I had thought about rearranging our seats at the table. Putting his back to the situation would most certainly ease any apprehension he felt and allow him to escape stares. But this was not how I wanted to teach my son to deal with situations that left us feeling uneasy. Like the lyrics in the song I listened to tonight I wanted Josiah to not let fear control him. I wanted him to feel every where he went he was welcomed and accepted and NEVER ALONE. So turning to the table behind me I gave a fearless hello at the eyes that had glanced in our direction.
I spent time later in the evening discussing with Josiah that the looks he might receive are not meant to make him feel self conscience. More often than not it is empathy if anything at all. Most importantly I wanted him to know he is loved by so many. I also wanted to help him feel confident and proud of who he was. We talked about how many of us have special things about our appearances that might not be labeled as beautiful by the fashion world , such as; being over weight, crooked teeth, thinning hair or wrinkles around the eyes to name a few. But each and everyone of us are created by God and are beautiful. In our own unique special way we are beautifully different-just like snow flakes no two exactly the same.
I tucked Josiah in tonight, before we said our good nights, I snuggled in next to him and we listened to Phillip Phillips sing "Home" on youtube. When the song was over Josiah told me he was not going to let the demons make him afraid. That was a wonderful idea I told him, and it was exactly what I had hoped he would say.
We might not always have nights that work out so nicely. One of the females from the table behind me gave Josiah a cupcake from their party tray. Josiah smiled at her for the kind gesture and accepted her treat. We enjoyed our dinner together and I felt happy that the experience was a good one for us both. I felt relieved that Josiah was not as troubled by the looks he felt upon him tonight. But after Josiah fell asleep I was left with so much more to think about.
Cody my middle son went to his homecoming dance this year. This was his very first dance and although I was excited and proud of him, I felt fear. Fear because his disease posed another problem socially. Cody bravely set out to attend this dance with out a group of friends or classmate to hang with. He and his para from school arranged to meet at the dance. Cody assured me he enjoyed his time with Julie -his para, who graciously gave up her time to spend an evening hanging out with my teenage son, however he admitted the night left him feeling a bit left out. He did not dance with friends or have any interaction with his classmates. He told me he received a few smiles but mostly looks. Looks that left him a little self conscious. What Cody could not tell me, the photos taken on the camera I sent with him showed me. His pictures were all of him alone.
Yes, I could hire Cody a date easily. I could even keep that secret from him. I can not however make someone be his friend and I also can not shield him from the harsh reality of the world. I can let him hold on to me as long as possible but like all teenagers he wants to soar and travel down unfamiliar roads. This new level he has reached I embrace, as much as it scares me, I rejoice that Cody faced his demon and went to the dance alone, confident and proud.
We live in times that are truly trying to address bullying and social acceptance on many levels. I have taken several steps in helping to approach the obstacles Codys physical and mental impairments present. At his last IEP meeting this past week I enlightened his school staff on the social aspect Cody was challenged with recently. We discussed several ways to try to attempt to help Cody feel a bit more accepted amongst his peers. Unfortunately the answer is not a simple one, not for my son or any teenager faced with the longing to belong. So it brings me to think more about the demons that feel all of us with fear, as in Phillips song.
My boys are home tonight, tucked in bed safely, knowing they are loved and have a place they call home. I say good night with one thought- just imagine, how it would feel if we never had to feel alone and if the world felt like our home where ever we went. So I ask when you see that someone that might be different from you in some obvious way, smile at them even offer a hello, you might just be the ONE friendly face they see.
I listened to his beautiful strong voice and moving lyrics. He definitely was one of my favorite male recording artist. His words reached inside of me giving me much more than I imagined to think about.
I reminisced momentarily about dinner out tonight with my youngest son Josiah. The uneasiness he felt from a near by table as they occasionally looked at him and the approach I decided to take to help him overcome his uncomfortableness. I had thought about rearranging our seats at the table. Putting his back to the situation would most certainly ease any apprehension he felt and allow him to escape stares. But this was not how I wanted to teach my son to deal with situations that left us feeling uneasy. Like the lyrics in the song I listened to tonight I wanted Josiah to not let fear control him. I wanted him to feel every where he went he was welcomed and accepted and NEVER ALONE. So turning to the table behind me I gave a fearless hello at the eyes that had glanced in our direction.
I spent time later in the evening discussing with Josiah that the looks he might receive are not meant to make him feel self conscience. More often than not it is empathy if anything at all. Most importantly I wanted him to know he is loved by so many. I also wanted to help him feel confident and proud of who he was. We talked about how many of us have special things about our appearances that might not be labeled as beautiful by the fashion world , such as; being over weight, crooked teeth, thinning hair or wrinkles around the eyes to name a few. But each and everyone of us are created by God and are beautiful. In our own unique special way we are beautifully different-just like snow flakes no two exactly the same.
I tucked Josiah in tonight, before we said our good nights, I snuggled in next to him and we listened to Phillip Phillips sing "Home" on youtube. When the song was over Josiah told me he was not going to let the demons make him afraid. That was a wonderful idea I told him, and it was exactly what I had hoped he would say.
We might not always have nights that work out so nicely. One of the females from the table behind me gave Josiah a cupcake from their party tray. Josiah smiled at her for the kind gesture and accepted her treat. We enjoyed our dinner together and I felt happy that the experience was a good one for us both. I felt relieved that Josiah was not as troubled by the looks he felt upon him tonight. But after Josiah fell asleep I was left with so much more to think about.
Cody my middle son went to his homecoming dance this year. This was his very first dance and although I was excited and proud of him, I felt fear. Fear because his disease posed another problem socially. Cody bravely set out to attend this dance with out a group of friends or classmate to hang with. He and his para from school arranged to meet at the dance. Cody assured me he enjoyed his time with Julie -his para, who graciously gave up her time to spend an evening hanging out with my teenage son, however he admitted the night left him feeling a bit left out. He did not dance with friends or have any interaction with his classmates. He told me he received a few smiles but mostly looks. Looks that left him a little self conscious. What Cody could not tell me, the photos taken on the camera I sent with him showed me. His pictures were all of him alone.
Yes, I could hire Cody a date easily. I could even keep that secret from him. I can not however make someone be his friend and I also can not shield him from the harsh reality of the world. I can let him hold on to me as long as possible but like all teenagers he wants to soar and travel down unfamiliar roads. This new level he has reached I embrace, as much as it scares me, I rejoice that Cody faced his demon and went to the dance alone, confident and proud.
We live in times that are truly trying to address bullying and social acceptance on many levels. I have taken several steps in helping to approach the obstacles Codys physical and mental impairments present. At his last IEP meeting this past week I enlightened his school staff on the social aspect Cody was challenged with recently. We discussed several ways to try to attempt to help Cody feel a bit more accepted amongst his peers. Unfortunately the answer is not a simple one, not for my son or any teenager faced with the longing to belong. So it brings me to think more about the demons that feel all of us with fear, as in Phillips song.
My boys are home tonight, tucked in bed safely, knowing they are loved and have a place they call home. I say good night with one thought- just imagine, how it would feel if we never had to feel alone and if the world felt like our home where ever we went. So I ask when you see that someone that might be different from you in some obvious way, smile at them even offer a hello, you might just be the ONE friendly face they see.
Saturday, September 22, 2012
Beyond Barriers
I surveyed the large canoes as they rested in the water. Not exactly sure how this next adventure that awaited for me and my sons would accommodate all our needs. I looked back at Josiah and Cody where they sat waiting for me, with their 16 year old cousin Nathan- who had generously agreed to accompany us on our family camp trip. He was my muscle support for the weekend. Standing at 6ft he easily could help assist with lifting Cody, allowing me and my boys to participate in MDA's family fall camp. The weekend had gone so wonderful and this last adventure was the perfect ending to yet another experience I shared with my sons. Yes, the the wilderness guides that were scheduled to take us on this canoe ride had assured me that my boys would be supported comfortably and safely during our trip. I was anxious and excited to be able to have this opportunity with them. I threw them the thumbs up, immediately seeing smiles cross their faces.
Carefully they approached Cody and with my suggestions of the two man lift, raised him from his electric wheel chair into the awaiting canoe. Next to Nathan, Cody sat fitted with back support and an oar strapped to his hand allowing the ability to help paddle. I marveled at the sight, Cody placed the oar in his hand down in the water. Never did I imagine I would see this happening. Carefully I followed as as my little Josiah was cradled in to the next guides arms and carried to the canoe. Gently and smoothly he was placed in the specialized seat. Tears of pure joy filled my eyes as I stepped back to capture the moment on film. I paused looking over at the three of them. It had been such a wonderful summer and this moment now just added to all the wonderful memories we created together. This was the world I wanted and strived for, for my sons. This moment right now, seeing past the ugliness that DMD caused our lives. Yes, I was convinced I had did good this summer in CREATING LIFE BEYOND BARRIERS for them. I climbed into the canoe next to my Josiah, wanting to savor the joy from what we were sharing. A single tear trickled down my cheek as I looked out into the water, I had and was still succeeding in my ambition, creating an accessible world for my two physically challenged sons. I smiled and felt joy fill me, embracing all that was good in our world right now.
Carefully they approached Cody and with my suggestions of the two man lift, raised him from his electric wheel chair into the awaiting canoe. Next to Nathan, Cody sat fitted with back support and an oar strapped to his hand allowing the ability to help paddle. I marveled at the sight, Cody placed the oar in his hand down in the water. Never did I imagine I would see this happening. Carefully I followed as as my little Josiah was cradled in to the next guides arms and carried to the canoe. Gently and smoothly he was placed in the specialized seat. Tears of pure joy filled my eyes as I stepped back to capture the moment on film. I paused looking over at the three of them. It had been such a wonderful summer and this moment now just added to all the wonderful memories we created together. This was the world I wanted and strived for, for my sons. This moment right now, seeing past the ugliness that DMD caused our lives. Yes, I was convinced I had did good this summer in CREATING LIFE BEYOND BARRIERS for them. I climbed into the canoe next to my Josiah, wanting to savor the joy from what we were sharing. A single tear trickled down my cheek as I looked out into the water, I had and was still succeeding in my ambition, creating an accessible world for my two physically challenged sons. I smiled and felt joy fill me, embracing all that was good in our world right now.
Wednesday, September 12, 2012
age is more than a number
I glanced at the calender and saw the scribbling in ink that I had marked earlier. A day highlighted only to remind me of its true meaning. Aging. My aging to be more specific. I sighed heavily, and for a split second tried to imagine what it might be like to see it differently. No, the thoughts that came to me brought me right back to reality. Aging was simply down right scary.
I finished cleaning the dishes that remained from Bill, my brother-in-laws surprise 60th Birthday party, we had thrown the day before. The event turned out wonderfully. I felt pleased we had managed to keep him at large from our planning and pulled it off in spite of a few minor set backs. My sister Marie his wife did not let breaking her arm slow her down. With her arm in a cast she still worked her magic in the kitchen, creating side dishes to accompany the delicious fried chicken she had decided to have catered rather then put her and myself through overwhelming stress by creating a feastful buffet. Unfortunately also though the weather had not cooperated completely. Strong winds developed in the late afternoon, which left us celebrating indoors. I could still see the decorations my great nieces had helped me put up outside, as I looked out the window. It was a little disappointing that our efforts had not really created any impact on keeping with our luau theme. But what left me truly troubled was that none of my brother in-laws family made an appearance at his party. In spite of all my sisters attempts at inviting them and reminding them of the event, we were left with no shows-for lack of any other way to put it. It saddened me some, that his siblings did not want to have the same closeness he shared with my family.
"Yes", I said to myself as I scanned the room for more remnants of the fiesta, "the event did in fact go very well". I was so happy I could be a part of something special for Bill. He was truly my big brother in every sense of the word . This was the least I could do for the man that gave so willingly of himself and accepted my sons so lovingly into his world. I smiled thinking about the morning before when he had agreed to take my sons to the MN Gopher football game, that I manged to get tickets for. It pleased me so much that I was able to have a strong male role model for Josiah and Cody. A male figure other than their big brother Zach to bond with. With his own children now grown and having children of their own, rather than enjoy his freedom of an empty nest and the ability to freely come and go with it, Bill took on the role as a Personal Care Attendant (PCA) for my sons. With out any hesitation he and my sister Marie adjusted their own lives to readily make themselves available to help assist me with the care of my two younger boys almost daily.
So now with the dishes done I was left alone in thought again with my obsession on age. I actually felt an ache inside as the number of my own years flashed in my head. I stood staring out the window that over looked my large deck facing the lake. It was not the wrinkles I feared, or the softened flesh I would develop, where once my toned muscle existed. It was not the fact I would be celebrating yet another birthday home with my boys, wishing for just once to have a bit more. Enjoying the thought of a date out, that I did not plan. My mind drifted for a moment. I tried to imagine what it might be like to celebrate a Birthday over a romantic dinner. Gazing into the eyes of someone who thought of me in a special way, knowing that he had planned this time for just me. As fast as that thought entered it fleetingly left me. A concept to foreign to me. Yes I had had romantic dinners since my divorce but sadly never dinner out on the Day or actual time spent with some special guy on my Birthday. "Hmm" I thought, I still have hope.
Now openly and very honestly I admit there is a bit more to my obsession, "Fear of growing old alone". Not the fear that I might live a life without a partner, but that the hands I hold now daily, through everything- are my two younger sons in wheelchairs, it was just that simple. Fear, because it is solely up to me to make each day work for us. Its the fear that each year, I feel, I have to strive so much harder to ensure my sons will be fully cared for. Age haunting me, almost scoffing at me because as my own body wears, I have to find ways to still be able to lift and care for my sons. An even greater fear, that as I age so do my terminally ill sons. Okay- I said it, fear that I want them with me as long as I am here, but realistically, Duchenne shows no mercy, in the end it will win. Gut wrenching heartache, knowing the devastation- that is to come, when I will no longer have them to hold. At times I almost feel as though I am drowning with the realization that right now today is as good as it will ever get for them, for me, for us. Worried that if I slip up, my mistakes will have the most impact on my sons.
I picked up a photo of me with all three of my boys. Cody and Josiah were still able to stand when it was taken. My heart at this moment ached for those days. Not that life was easier, but age did not seem to be as big of a factor to us then. I did not worry then that time would somehow destroy my ability to be what I needed to be for my sons. I also did not think about age being a threat to their own life. Slowly I felt a tear trickle down my cheek. I wondered briefly what it might feel like to not have this constant fear. The fear that with each Birthday something heartbreaking loomed closer. Wiping my cheek I felt almost embarrassed that I had allowed myself to cave into this admission of weakness. But, standing there right now I just wanted to understand why I felt so stressed over a coming birthday? I had what I treasured most in this world now with me, my sons. I was still strong and clearly capable to care for my sons. But was that it? And if quite possibly so, why was that not enough for my restless soul? Just like magic it hit me. There it was. Yes, I had made it my ambition to meet the needs of my children. And it was " time" now that secretly I believed worked against me. I feared I would have to settle because age was calling to me, to my brother in law, to the family that I and my sons relied on. I was fearing that somehow I would be forced to settle for less of myself, and so would my sons. It was that fear of settling for less that surrounded me now. I desperately did not want to feel age become my enemy too.
Its is amazing when you can face a realization of yourself. When you can acknowledge your fear, almost hold it in the palm of your hand. I wont say I had a life changing experience in that moment. I will still struggle with seeing myself as an old maid, I will still have to fight my own despair that Duchenne brings to my world. My fear of aging and caring for my sons is still with me. But its what I do with this discovery " that fear is my own demon and at times holding me back", that will help me and my sons to grow to another level.
I finished cleaning the dishes that remained from Bill, my brother-in-laws surprise 60th Birthday party, we had thrown the day before. The event turned out wonderfully. I felt pleased we had managed to keep him at large from our planning and pulled it off in spite of a few minor set backs. My sister Marie his wife did not let breaking her arm slow her down. With her arm in a cast she still worked her magic in the kitchen, creating side dishes to accompany the delicious fried chicken she had decided to have catered rather then put her and myself through overwhelming stress by creating a feastful buffet. Unfortunately also though the weather had not cooperated completely. Strong winds developed in the late afternoon, which left us celebrating indoors. I could still see the decorations my great nieces had helped me put up outside, as I looked out the window. It was a little disappointing that our efforts had not really created any impact on keeping with our luau theme. But what left me truly troubled was that none of my brother in-laws family made an appearance at his party. In spite of all my sisters attempts at inviting them and reminding them of the event, we were left with no shows-for lack of any other way to put it. It saddened me some, that his siblings did not want to have the same closeness he shared with my family.
"Yes", I said to myself as I scanned the room for more remnants of the fiesta, "the event did in fact go very well". I was so happy I could be a part of something special for Bill. He was truly my big brother in every sense of the word . This was the least I could do for the man that gave so willingly of himself and accepted my sons so lovingly into his world. I smiled thinking about the morning before when he had agreed to take my sons to the MN Gopher football game, that I manged to get tickets for. It pleased me so much that I was able to have a strong male role model for Josiah and Cody. A male figure other than their big brother Zach to bond with. With his own children now grown and having children of their own, rather than enjoy his freedom of an empty nest and the ability to freely come and go with it, Bill took on the role as a Personal Care Attendant (PCA) for my sons. With out any hesitation he and my sister Marie adjusted their own lives to readily make themselves available to help assist me with the care of my two younger boys almost daily.
So now with the dishes done I was left alone in thought again with my obsession on age. I actually felt an ache inside as the number of my own years flashed in my head. I stood staring out the window that over looked my large deck facing the lake. It was not the wrinkles I feared, or the softened flesh I would develop, where once my toned muscle existed. It was not the fact I would be celebrating yet another birthday home with my boys, wishing for just once to have a bit more. Enjoying the thought of a date out, that I did not plan. My mind drifted for a moment. I tried to imagine what it might be like to celebrate a Birthday over a romantic dinner. Gazing into the eyes of someone who thought of me in a special way, knowing that he had planned this time for just me. As fast as that thought entered it fleetingly left me. A concept to foreign to me. Yes I had had romantic dinners since my divorce but sadly never dinner out on the Day or actual time spent with some special guy on my Birthday. "Hmm" I thought, I still have hope.
Now openly and very honestly I admit there is a bit more to my obsession, "Fear of growing old alone". Not the fear that I might live a life without a partner, but that the hands I hold now daily, through everything- are my two younger sons in wheelchairs, it was just that simple. Fear, because it is solely up to me to make each day work for us. Its the fear that each year, I feel, I have to strive so much harder to ensure my sons will be fully cared for. Age haunting me, almost scoffing at me because as my own body wears, I have to find ways to still be able to lift and care for my sons. An even greater fear, that as I age so do my terminally ill sons. Okay- I said it, fear that I want them with me as long as I am here, but realistically, Duchenne shows no mercy, in the end it will win. Gut wrenching heartache, knowing the devastation- that is to come, when I will no longer have them to hold. At times I almost feel as though I am drowning with the realization that right now today is as good as it will ever get for them, for me, for us. Worried that if I slip up, my mistakes will have the most impact on my sons.
I picked up a photo of me with all three of my boys. Cody and Josiah were still able to stand when it was taken. My heart at this moment ached for those days. Not that life was easier, but age did not seem to be as big of a factor to us then. I did not worry then that time would somehow destroy my ability to be what I needed to be for my sons. I also did not think about age being a threat to their own life. Slowly I felt a tear trickle down my cheek. I wondered briefly what it might feel like to not have this constant fear. The fear that with each Birthday something heartbreaking loomed closer. Wiping my cheek I felt almost embarrassed that I had allowed myself to cave into this admission of weakness. But, standing there right now I just wanted to understand why I felt so stressed over a coming birthday? I had what I treasured most in this world now with me, my sons. I was still strong and clearly capable to care for my sons. But was that it? And if quite possibly so, why was that not enough for my restless soul? Just like magic it hit me. There it was. Yes, I had made it my ambition to meet the needs of my children. And it was " time" now that secretly I believed worked against me. I feared I would have to settle because age was calling to me, to my brother in law, to the family that I and my sons relied on. I was fearing that somehow I would be forced to settle for less of myself, and so would my sons. It was that fear of settling for less that surrounded me now. I desperately did not want to feel age become my enemy too.
Its is amazing when you can face a realization of yourself. When you can acknowledge your fear, almost hold it in the palm of your hand. I wont say I had a life changing experience in that moment. I will still struggle with seeing myself as an old maid, I will still have to fight my own despair that Duchenne brings to my world. My fear of aging and caring for my sons is still with me. But its what I do with this discovery " that fear is my own demon and at times holding me back", that will help me and my sons to grow to another level.
Tuesday, August 21, 2012
The words stung at me as if a wasp had just left a bite. I felt heat rush to my face as my emotions turned to anger. I had to leave before things were said that we might regret later. Slowly I reached for my purse and began to walk toward the door. I glanced over to wear he still sat, blankly looking in my direction. We had been here before. Challenging each other verbally, had we learnt nothing from sharing our honesty. I paused for a moment wanting to turn back to his direction, hoping somehow magically we could change the moment. Sadly there was just nothing I could do, with out surrendering my dignity. I opened the door half hoping that I would feel his presence behind me. Wanting desperately to be reminded of the warmth we once shared. The night air chilled me as I stepped out into it. I knew this was what I had to do. Taking a deep breath I opened my car door, and climbed in. He was no where in sight , and for a split second I pondered the thought of running back inside. I imagined myself falling into his strong arms. Could walking away be this easy, I thought to myself. For the both of us, it just seemed to be to easy. Could we really have came this far only to throw it all away?
My drive home left me alone with my thoughts. I wondered why I did not even have a single tear. I felt nothing, a feeling that had become very familiar to me. It seemed if I showed emotion I was being dramatic, and if I showed nothing I was cold. It just seemed clear to me that whatever I was, it was just not the right thing for him.
My drive home left me alone with my thoughts. I wondered why I did not even have a single tear. I felt nothing, a feeling that had become very familiar to me. It seemed if I showed emotion I was being dramatic, and if I showed nothing I was cold. It just seemed clear to me that whatever I was, it was just not the right thing for him.
Sunday, July 8, 2012
Though you may mean well, please remember, I am only human. I am a person just like you. I bleed when I am cut. I cry when I hurt. I become angry when provoked. Smile when I am happy. Like you, I also can be over come by fear when I feel helpless. Like you, I feel joy and sadness. Like you, I seek love and love back.
I thank you for caring, and taking time to listen. Bless you for making the time to read my words. I understand the sentiments that you offer from the bible are meant to comfort me, to give me hope and inspiration when I feel devastation. It is not God I find fault with, or his love I doubt. It is not my lack of faith that has me lost and in pain.
Just like you, I praise God for all his blessings. Like you, I rely on hope to get me through each day. But, also like you, I am human and struggle with fear, loss and abandonment from this world. Like you, I strive for acceptance and search for fulfillment. Like you, I seek peace and joy. Like you I pray.
Although you want to offer me support, quotes from the bible will not make my sons disease go away. Telling me to have hope, will not stop their disease from progressing. Encouraging me to be strong, will not lessen my heartache as I watch them struggle daily with muscle loss.
I ask you to please allow me the dignity to show my sorrow when my heart is breaking. Give me time to work through my frustration and heartache. Be patient, while I try to heal my wounds.
Be be the friend I can turn to in my time of need. Be the hand that holds mine when I feel alone. Be the arms that embrace me when I need comfort. Loan me your heart when mine is breaking. Help me to see light, when darkness falls upon me. Give me understanding without judgement, forgive me of my shortcomings with out shame. See me for all the goodness I posses.
I thank you for caring, and taking time to listen. Bless you for making the time to read my words. I understand the sentiments that you offer from the bible are meant to comfort me, to give me hope and inspiration when I feel devastation. It is not God I find fault with, or his love I doubt. It is not my lack of faith that has me lost and in pain.
Just like you, I praise God for all his blessings. Like you, I rely on hope to get me through each day. But, also like you, I am human and struggle with fear, loss and abandonment from this world. Like you, I strive for acceptance and search for fulfillment. Like you, I seek peace and joy. Like you I pray.
Although you want to offer me support, quotes from the bible will not make my sons disease go away. Telling me to have hope, will not stop their disease from progressing. Encouraging me to be strong, will not lessen my heartache as I watch them struggle daily with muscle loss.
I ask you to please allow me the dignity to show my sorrow when my heart is breaking. Give me time to work through my frustration and heartache. Be patient, while I try to heal my wounds.
Be be the friend I can turn to in my time of need. Be the hand that holds mine when I feel alone. Be the arms that embrace me when I need comfort. Loan me your heart when mine is breaking. Help me to see light, when darkness falls upon me. Give me understanding without judgement, forgive me of my shortcomings with out shame. See me for all the goodness I posses.
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