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Wednesday, November 18, 2009

Waiting can be so difficult. It seems as though I have spent much of my life consumed with waiting. While my life will still be filled with periods of waiting, none will be has difficult as the past 15 years.

Today Wednesday November 18 my middle son Cody has begun the first stages of participating in a study for treatment of nonambulatory DMD patients with ataluren Cody is the first child to take part in this phase of the study in the world. The years of waiting for some treatment since Codys first diagnosis almost 15 years ago with this disease has ceased, giving us renewed hope.

I watched today as Cody performed multiple test and set standards of performance for the boys to follow him. My eyes at moments filled with tears of admiration as my child dilligently struggled to perform range of motion most of us never give thought to. As he accomlpished each task he beamed with pure confidence in his ability. Never once giving up as each test of strength became increasingly harder. Cody spoke today with excitement of his plan to become stronger. Joy over came me, this truly is a time of thanksgiving for us.

As we enter into this phase of the study I carry with me a light I have been blessed to see. My youngest son Josiah has been part of the first phase in ambulatory DMD children taking ataluren, for a month now. We have just begun to notice a small increase of strength and walking. While we are still at baby steps each effort and increase of strength brings me joy beyond words. Where once I saw fear and disappointment in my Josiahs eyes I now can see
determination and confidence. I see restored faith in himself. I rejoice in the blessings that once were only in my dreams.

While we enter into this new journey of our lives I am filled with the belief that waiting and hoping, while hard and almost impossible at times, often it is all we can do. Knowing, that had I given up on seeing my sons thrive we would not stand where we are today. Having had the courage to face the many obstacles in our way has now given my boys another outlook on their life. After all, I was told Cody would never make it into the research study. Waiting does not mean dismissing ourselves from working toward our goal. Staying focused and driven in our mission may be at times the only way to keep our hope alive.

We may stumble and even fall at times but we will always pick ourselves up again. We will take baby steps and some tims stray away from the path. We will not be afraid to be scared. We will continue to have the courage to turn to those that love us when we feel we have yet hit another barrier. we will follow our heart and take chances. We will wait in hope and joy and embrace every triumph. We will not ever give up.

Sunday, October 11, 2009

Josiah my youngest became ill this evening. Seems a strain of a virus has interupted our lives. While I held Josiah in my arms this evening he fell a sleep. At last a moment of rest for his fatigued little body. He breathed deep with a kind of half snore and was beginning to feel warm to the touch. Rest was good and needed.

Tenderly I ran my fingers through his hair gently stroking his forehead every so often. My thoughts drifted away from the movie I had been watching. I looked down at Josiah as he lay asleep in my arms. Like any parent it pained me to see my child suffer. I had spent the last few hours watching his already weaken body from DMD become weaker. Holding him was all I could do right now. Hold him, love him and wait.

Moments like this make me so aware of how much we do need and depend on others. How the big plan was not designed to have us be alone. How we need human contact and touch to be truly happy and healthy. We have all heard miraculous stories of healings. Some through touch others through prayer. All having a few things in common; compassion, love and faith from someone some where.

I am not sure we will ever know why some of us seem to suffer more than others. Why we have some who live through tragedy and others who do not. Why children die or some elderly adults are left alone and forgotten. Its those times when someone we know is ill or hurting that give us the opportunity to show compassion and love. When we are needed to offer our healing touch of kindness. Our love.

I close in thought: God created mothers, to hold and heal. Oh, I do so miss mine.

This virus shall pass and I am hoping soon. Super mom I am not. I am finding it difficult to assist Cody while holding Josiah and his bucket.

Saturday, October 10, 2009

Snow was on the ground when we awoke this morning. A lite dusting had appeared in the night. As I opened my door to let out the dog a sharp sting could be felt from the wind. It Seemed our seasons had truly changed. The trees were much barer. On the ground laid massive piles of leaves that occasionally were whirled around by the cool autumn wind. Outside indeed was different.

With this new season I wondered would it bring along change for us. Change that we would embrace. Change that we desperately wanted and needed.

I felt as though every step forward lately sent me back spinning to no where. My time in the past months had really not measured up to what I expected of myself and of some of those around me . The only thing that did seem to be clearer was the way I was beginning to see others label anyone different.

Cody asked me the other day, why people look at him when he goes places. He did not like it and wanted them to stop. His beautiful eyes eagerly searched my face for an answer. Like any mother who protects her young I new I had to tell him something that would make him feel good. "Because the world wants to know why someone so beautiful is in a wheel chair". I said to him. "They wonder if you hurt or if they can help in some way". Cody smiled at me for a moment. " Mom they stare" he said. "They do not smile or say hi". "Just a dumb stare". He looked down as he spoke his smile fading. I knew the stare, he spoke of. The look, he felt.

My older sister Marie had sewn Cody a cape last Fall that we called the invisible cape. It helped Cody feel more comfortable when he was out in public places with large crowds. He could feel hidden and safe from the stares in the large hood. The cape helped with the transition from walking to wheelchair for Cody. A time we all struggled with. A time we all needed to adapt too. This was good he was talking to me now about his feelings. Cody was not showing me anger like he had in the past. He seemed more sad that this was happening. I have to admit I felt some what helpless. I can no more change the people than the seasons. This was something I could not fix or change but ,once again show Cody he would have to accept this also in his life.

I spent the rest of the morning while my sons were in school thinking about people. I thought about the past months and the changes I had experienced in relationships with friends. I thought about how my three brothers who also lived with DMD had to deal with stares and comments. How often I heard hurtful remarks from people who claimed to be a friend. While there are more services to help the disabled, and we see less discrimination, people are still uncomfortable around someone who seems different. Why even the people in my life who have known my sons since birth seem unable to feel comfortable, that this is part of who my sons are. It tires me deeply trying to help my boys fit in. I want to carry a sign at times saying-Its fine to not treat them like a child who can run, and walk with no limits. My sons need to have those around them accept them. Adapt to the physical changes that are happening to them.
We adapt to the old, the toddler, pets, just about anything. We had yet to be invited to a home that was made accessible for them even temporarily.

I thought about how Cody found himself feeling safe and secure in his home. I had to agree there were no uncomfortable stares here. He had room to move and his needs were met here. We did not feel like we were imposing on anyone or intruding. Cody could be happy or sad no one thought less of him. I took comfort knowing that all three of my sons loved home and while the weather changed outside my sons were comfortable and safe inside.

Cody came home from school that day happy, after all he did not have to go outside of the school room today.

My night was spent still pondering change. I had experienced the demise of some friendships this summer. Which left me feeling some what sad. I was at a time when I needed more understanding and love in my life. I once again, could only find comfort in my love for my boys.

Feeling some what worn out from the last five years, of putting the pieces back together from our shattered life, the spinning feeling returned to me. I appeared to be no closer at controlling my relationships with anyone outside my family. One step forward seemed to make me feel in less control and labeled for my choice.

My son Zach can see so much more beyond his young years of 19. He is probably, second to my friend Cindy, the most non- judgemental person I know. Not to long ago I learned he was very upset to hear that a close friend of mine had stated that she knew more about his feelings than I did toward someone in my life this past summer. Her interpretations were untrue. Zach being a very forgiving person moved on keeping in mind some people have special needs. Some people are shallow, selfish, rude even. Zach made a very good point how we just need to adapt. When ever someone that may be some what difficult is around we need to adapt. I felt sad that friend and friendship did not necessarily come together with some of my relationships. Totally getting what Zach meant it made sense. I would not give her nor anyone else the opportunity to drag me down to there unhappiness.

As the season changes and my friendships I hope I will still continue to see the depths to which living was intended to be. While not all changes are pleasant or easy many though will take us to great lengths. Such as finding peace within our world and ourselves. Create new relationships that will allow us to grow richer in love. Change can help us find new and better ways to help each other. Give us in sight to who we really are and who our friend really is. As every season brings about change we are given a chance to see the world in a new way.

Tuesday, October 6, 2009

Watched the boys swim today. If only we were fish, or a species of man that lived in water. Cody would be walking. I love his independence and confidence in the water. I see so much of him come alive as he becomes weightless. I see him use muscle that otherwise seem to be of no use. Swimming is truly a benefit to his well being.

Josiah has came such a long way from when he first began to go under water. The fear in his eyes has totally vanished, replaced by a confident smile as he surfaces. I see joy in his eyes that once was not there. I see strength where there was once fear. I see my child growing and maturing before me.

Lifting is not becoming easier though for me. My determination now is not enough alone. I fight to maintain his balance as well as my own while transporting Cody. I did feel his legs give out today while he was in my arms. Holding him up took all the strength with in me. we managed but, for the first time I felt a slight rush of fear surge through me. I am his legs and arms most of the time. If I fail where does that leave this beautiful young man. He depends on me I must be strong at all cost.

I thought about the word strength today. It came up in several conversations I had with friends and family. Strength-physical and emotional. Both making up who we are, what we can do and how we do it. I have heard people say " they just are not as strong as some people". Hmm... We all start off the same. Coming from the womb. Each having to take our first breath, first swallow, most of us our first step and first word. Perhaps it is the way we approach and handle each event that makes us different.

We can choose to quit, give up. We can wait for help or someone to do it for us. We can also choose to push ourselves not let anything stop us from achieving our goal or finding a way to succeed. Often that might mean looking into our selves for something. Something that God has put inside all of us. It may not always be physical strength or emotional it could just be the strength to ask for help.

I was faced with finding strength today. Physical strength and emotional. A strength that held faith in myself and God. A strength to find the courage to handle my fear and doubt. I over came a weak moment and I carried my son up a flight of stairs. I know my God would not entrust me with the care of another human being if I could not do the job or find away to do it.

Failing or quitting would not be, trusting in him and the faith he has in me. There may come a time when I will need help with physical strength to help my sons succeed. I trust that God will guide me again. I still will have my days where I just do not want to face the world or lift another thing. I will have my sad moments of fear, doubt and lonliness. I will also always have free will to choose to quit. Or I can choose to be strong let others lean on me. To be the arms and legs for my sons as long as they need me. To be strong enough to face this journey alone if that is my fate. To also be strong enough to have the courage to seek help and accept WHEN I CAN NO LONGER DO IT MYSELF.

Strength is there for all of us, not a gift for a chosen few.

Strength lies in each one of us. Its our choice what we choose to do with it.

Monday, October 5, 2009

The boys started off for school a little more tired this morning than usual. As I stretched Cody's legs he pulled the covers over is head, not ready to fully wake up yet. He was so warm and content snuggled under his covers. What would a few more minutes of snooze time hurt before insisting and assisting him to sit up.

My Josiah on the other hand made it clear he was tired but, suffering from a form of "I must be first at all times", forced himself to allow me to help him out of bed and begin his morning routine. Which at all cost must not be interupted. Unless we have the time for tears and a display of complete emotional upset, routines are a very important part of both my younger sons lives.

It is just the way we aprroach most days to keep a happy balance of structure and maintain stability in their already fragile world. Children have been said to be so resilant yet, in this world we have adults who can barely function as quote un quote normal. My belief children are not so resiliant and the scarring occurred from such young ages does infact affect us later on in life. If I can offer my children Love, stability, peace of mind and an enviorment that strives to meet their ever increasing needs I am giving them my best.

Today we are off to a good start for a Monday. No upsets and the busses were on time.

As for me:

I spent the later part of my night last night discussing with a friend relationships
. By the time I did make it to bed I had firmly convinced myself that my past relationships since my divorce were merely phases in my life to get me to where I am today. Confident and Stronger than ever. Having said that I still was left with wondering if falling in love was something I would ever allow myself to do again. It was very obvious I had not ventured down that path in the last five years. Walking away from relationships seemed to cause me no more pain than blinking. Am I becoming hard?

My morning has started off with a few texts from some want to be suitors. Wishing me a good morning and wanting me to consider meeting for drinks later in the week. Oh, it can be a good feeling to be pusued. However, once again I am faced with the challenges of the dating world. Comfortable with who I am I still struggle with where I actually fit in any where and every where. Opening up my life for a mere stranger to peek in is at the very least a difficult task for me. I will admit new beginings do offer the opportunity to show a differnt side of myself. All the same in the end I am still me. Hopelessly searching for love in all the wrong places. Can this time be different?

Sunday, October 4, 2009

If you dare come have a closer look, I smile because;

Cody stood for me today again. I pulled him to a standing position from his wheelchair, wrapping my arms around him, to help support his balance. While it was brief, a mere 10 seconds, I embraced the strength he found in his failing body. He beamed. His beautiful smile touched me so deeply.

As I sat him down again he excitedly said "see mom, I can stand for you". Yes he did. That was all I could ask for today and that was all I needed. Holding my beautiful 16 year old in my arms and looking into his brown round eyes. This was our now. Like every challenge Duchenne Muscular Dystrophy (DMD)brings to our lives we face each one together, when the time comes. Today it was standing.

Again, by God's grace I was given the tools I needed to lift, carry and care for my two youngest sons. There are only 15 pounds between my Cody and me. He stands 3 inches taller than myself at 5'3 and 112 pounds. In spite of his size, I can still manage to put him on back and carry him upstairs when needed. I am able to lift him from the floor in my arms. My brother in-law Tony recently has referred to me as freakishly strong. I feel empowered by those words. I am after all a single mom doing it all. I have no problem standing out from the rest.

Today before Cody and Josiah my 12 year old returned form their over night visit with their father. I spent sometime thinking about the news we had received earlier this week. I am so thankful at times like this I have my eldest son Zach to share in my joy. Hope has been given to us and it lingers in my mind constantly. My sons have been given an opportunity to participate in a trial drug study. While this is in no way a cure for their devastating disease, it does offer us hope. Hope that this drug will alter the progression of Duchenne (DMD) until a treatment or cure is found. That alone fills my heart with the joy of hope.

I know we are blessed. Not in the way that can be measured by money or material things. We know love, we know compassion. We share true and unconditional love. My boys are my life, my strength and in my weakest moments I have them and God to turn to. But as the longing for that something more invades me on lonely nights I have been haunted by the desire to fill my need as a woman.

The attraction for adult companionship, romance between a man and woman has brought another whole host of events into my life. As if I already do not have enough ups and downs I have been lured into the life of on-line dating.

Me, single mom of three, two with special needs, home owner, with income, searching for love after divorce. Faced with the hurdles of dating in her 40's. I made the first step creating my profile and putting me out there. Discovering I apparently do have the necessary physical attributes to make me a favorable candidate on the dating website. Finding dates are not the issue at hand. Making the connection from date to healthy happy relationship is. Past relationships presented me with the ability to learn and grow inside myself, but also leaves me wondering if I may be traveling to an unrealistic land.

The romantic in me wants so badly to believe in love and all that it is meant to be. The realist in me knows my journey with my boys will be one of great depths. That it will bring me to challenges and emotions few will dare to embrace. In my heart I long for the love that will hold my hand on the days that cast shadows. My mind draws an ever more clearer picture of me standing strong but alone.

Tomorrow I have emails to answer, dates to make or decline. Tomorrow Cody will stand a gain, be carried and need assistance with dressing, toileting all the little things most of us can do. Josiah will need help to stand and assistance available through out the day with many things. We will smile and be happy we have another day to try to get it right, which is to love each other.