PERSPECTIVE

Caden was up all night. I mean, literally, up all night. If Matt and I got a half hours sleep we were lucky. Caden was in a lot of pain so we comforted him, did what we could to ease his pain and stayed awake holding him in our arms. Although we did not sleep, we considered ourselves lucky.

Why?... Because Caden was with us all night. While many would be spending the next day complaining to their coworkers about their lack of sleep, I am grateful for my lack of sleep. To me, it means Caden is here with us and for this, we are blessed.

Caden finally fell asleep around 4:30 a.m.

Too many Mommy's and Daddy's said good bye to their little one's this past week. Too many precious, innocent angels earned their wings. Some, from the day they were born, never had an opportunity to leave the hospital. Others were doing well and then suddenly fell ill and yet other's had been fighting long, hard battles struggling to hold on. Yes...today I am very lucky.

Everything in life is about perspective. While many are grateful for what they have because they see what we go through on a daily basis, I am grateful for what we get to go through on a daily basis. The very fact that Caden envelops our lives is a blessing. His daily struggles, which become our daily struggles, are a gift and we are thankful.

Today's post is dedicated to all the little one's who have briefly graced this Earth and left behind lessons of love and strength for all of mankind. These warrior's fought hard battles and far surpassed expectations. They hung on to give their families time and left behind a legacy that will remain in our hearts forever. In their short lives, they have given more, expected less and loved unconditionally. Without the use of words they have told stories that will always remind us of just how precious life truly is.

Although they have left us far too soon, I believe with all my heart they are in a better place. As much as I can in no way imagine the pain these families are going through, I believe these children will live on in the goodness of others who were impacted by their short time here on Earth. 

Their presence lives on in the acts that follow by those who became a part of their journey. Maybe we will all be a little kinder, a little more patient and a little more appreciative of the gifts we have. Maybe we will take time to enjoy the little things, hug more and hate less. Yes...these little one's will always be with us.

They are the gentle breeze on a warm summer day; the sweet smell of fresh cut flowers; a beautiful butterfly dancing; a breathtaking sunset on a summer evening. They will watch over and protect those children who continue to fight. They are the small miracles that occasionally happen and no one really understands why.

God bless the little one's lost and those who continue to fight.

I leave you with this...

THE BRAVE LITTLE SOUL by John Alessi

December 6, 2010 at 9:25pm

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

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MOVING FORWARD...

Thinking back to the day when I first learned of Caden's brain injury, I remember, well to be honest...I remember very little. I watched the doctor's face as she rambled on about what we need to start doing with Caden in order to give him the best opportunity for success and all the while, I was feeling numb. This couldn't be happening; not to me. This happens to other people; I have a plan and this is NOT part of it.

Over time the initial shock wore off and I began going through the stages of grief:  denial, anger, bargaining, depression and acceptance. Although these stages are generally reserved for those who have lost a loved one, parents of children who have special needs go through a similar course, but in a different way. I am not sure I have completely made it through this process, but the heavy heartache of knowing my son will never be able to do the things typical children do, has slowly begun to lift.

At first I was in denial. "How can this be happening to me after all I have been through trying to get pregnant in the first place?". "Haven't I been through enough?". "NO...he'll be fine. Look at him. He looks fine. Caden will get better. You'll see... and he will be able to do everything his brother and sister will do." "Besides, Caden was the strongest during my pregnancy. He was my Belly Bully."  Yes, I truly believed he would be fine and the brain injury would just go away.

Thinking back, this was a very selfish phase. Yes, my heart ached for this little baby who I hadn't even gotten to know yet, but I had just been through a horrible pregnancy and now this was getting thrown at me. Of course, I am no longer in denial and I am grateful for that.

I am still angry but not as angry as I once was. I was mad at God. I didn't understand how He could do this to my son; to my my beautiful, precious, innocent little boy. I was angry and jealous of others with "typical" children. I believed their lives were so much easier than mine and it just wasn't fair. I am still angry but not just for what my son goes through everyday but for ALL the children. The last few years have opened my eyes to the world of sick and special needs children. It is a world I wish didn't exist but one that is more beautiful than anything I have ever seen.

I will never stop bargaining. Why should I? My husband and I would both sacrifice our lives in a heartbeat to give Caden the opportunity to do the things his brother and sister can do; to give him his health. I know this is not an option but I will never stop bargaining.

I often feel sad but I don't allow myself the time to be depressed. I think this is where starting this blog comes in. I needed an outlet and a way to express my feelings and I have found it in my writing. My blog has allowed me to open myself up to the world and in return has allowed the most amazing world into mine. I am less lonely now because I have found others who grieve and cry for their little ones, who inspire to make the world a better, kinder place and who advocate and fight with all their might for their little superheros. 

Acceptance...I am slowly finding my way and I love it. There is a sense of peace here. Acceptance is place where you can let go and start living again. It has allowed me to embrace Caden's demons and turn them into useful tools to hopefully help others. As I have said before, I live in the "now" and am happy here. It is acceptance that allowed me to scream in sheer delight when Caden army crawled backwards the other day. No...he didn't do it right and he should be walking, but he did something I have never seen him do before and I was the proudest mommy in the world. I have accepted what I can not change and, although I will always wish for Caden to be like other toddlers, I couldn't imagine Caden as any one other than the perfect little boy he is.

I have learned that it is okay to have bad days and there are days where I find myself back in denial, but I can move away from these emotions when I look at the beautiful boy in front of me. A boy who has inspired a world and has done more in his short life than many do in their lifetime. I have turned these emotions into positive energy; a force which drives me to fight for him and other children like him; a passion to do good and a spirit to live.

Click on the following link to watch the You Tube video:

Caden and his sister, Emily, singing their hearts out

CADEN'S JOURNEY

I have created a montage and story to share Caden's journey through pictures. As the montage shows, despite all he has been through, Caden continues to smile and light up the world.

This past weekend, many family, friends and acquaintances, came together to hold a fundraiser for Caden and our family. It was an unforgettable night of laughter, fun and generosity.

As I looked around the room at the many faces, some I had never seen before, it reminded me of just how lucky we are. So many people sacrificed their time and gave so much of themselves to help our family. We are forever grateful to all who have been there for us through this journey.

I don't watch the news and I, honestly, rarely pick up a newspaper for what I would see and read would be far too depressing. No...I read about the "little" people, I seek to know those who give more than they receive. I have learned that the world IS a wonderful place because of the kind, caring and generous people in it. I have surrounded myself with those who love more than they are loved, who give more than they get and who laugh more than they cry.

It is because of YOU, that Caden smiles. It is because of YOU, that we believe, hope and will never give up. Caden may be an inspiration to you, but know that it is because of YOU that he fights so hard.

Thank you from the very bottom of our hearts and God bless each and every one of you for being a part of our family and for coming along for the ride....

The GOOD, The BAD and My Downright UGLY!

The GOOD...

For those who have been following my posts, you know I generally try to stay positive. This has been a work in progress as I have a history of being negative about almost everything. Seeing the glass half full has allowed me to enjoy more from life and to appreciate even the smallest of "perfect" moments.

When I was first told of Caden's brain injury, life came crashing down for me but the shock of it all hadn't sunk in until much later. It was when I saw Caden's triplet siblings progress ahead of him, that I realized despite them being the same age they were in very different places. Nonetheless, I believed Caden would develop at his own pace and with his brother and sister as a driving force of inspiration, Caden would become a "typical" little boy someday.

As time passed and I saw the "typical" world around Caden develop while my son stayed behind, I realized that the idea of Caden doing what his "typical" peers were doing was not in the cards. It took a long time to except this, but I have and I am good. 

Caden has brought more joy to my life than I could ever have imagined. Despite the many struggles, set backs and defeats, his strength has inspired me in ways I never knew possible. As I have expressed before, I am better because of him and this is GOOD.

The BAD...

However, I am human. As much as I try to stay positive, whether through my writing or general attitude, I too, have my BAD days. When Caden first began therapy at eight months old, I would watch the other children around him and often wonder where my son would be one day. Would he be like the little girl taking steps on her own or the boy using a walker? Or would he be like the older child who can do very little at all? It scared me to think that one second of Caden's life (the moment of the brain bleed), could lead to so many frightening possibilities. I remember crying at many physical and occupational therapy sessions because of my feeling of loneliness and sense of doubt. It was then that I began to live in the "now" and brush aside trying to imagine where life would take us down the road.

I remember feeling angry, jealous and bitter of "typically" developing children and their parents. I constantly compared Caden to "typical" children. "Wow, that baby can do that and Caden can't even..." or "I really wish Caden could do what that little boy the same age can do." I resented the norm because I had three developmentally delayed children at the time. I threw away all the baby books or "What To Expect In the First Year" type of books. They only frustrated and upset me more.

Eventually I watched Emily develop into a typical little toddler girl. Ethan, although delayed, learned to walk and talk and play as any three year old would. But Caden is still physically where a four month old should be. When Caden first started going to the pediatrician, the doctor would tell me Caden was behind in this and that. Now, the pediatrician doesn't even look at those milestone charts anymore as if to say there is no hope for Caden to ever make his way onto one of those "typical" charts.

I no longer compare Caden to "typical" children. I have gracefully accepted the fact that he is not nor will ever be "typical". Caden is special in more ways than I had ever imagined and I cherish the little gift I have been given.

This is not to say that I never get jealous of "typical" families or "typical" children. I often ask "Why?" and often think the dreaded "It's not fair". I question, scream and yell at God. I cry myself to sleep. I know I should not feel this way and I must embrace the gifts I've been given, but I am human and some days I just want run. And when I feel this way...I feel BAD.

My Downright UGLY...

When I started this blog I promised to be honest and speak from my heart. My heart hurts today. This is for no particular reason but I woke up, after a rough night of little sleep, feeling sad. Maybe it's the miserable weather or maybe hormones are going haywire but I ache today. Today is a day where I want to throw things, kick things and run away. Obviously none of that will take place, but it is how I feel... today.

So here is my downright UGLY.

I no longer get jealous and compare Caden to "typical" children. It is unrealistic to do so. Now I find myself comparing Caden to other children who have special needs and are fighting battles of their own. Caden began therapy with a group of children similar in age and similar in abilities. I see these children doing things now I only dream Caden could do and I get angry. Yes...angry and jealous of "special" children who have their own battles and have sacrificed so much. I hate myself for having these feelings but I look at my little boy and only wish for the miracles many of these children have been given; taking that first step, saying "mommy" for the first time, rolling over, sitting up and playing. I am even jealous of the mother's who's little one's now hit and bite them because at least it shows initiative to do something. I would do anything to have Caden hit me because he didn't want to do something or was angry at me.

Instead my sweet little boy just lies there. He watches the other children in therapy more than he works himself. It is as if he has given up on himself and tries to live through the lives of others. Sometimes I wonder if he is jealous too, but then I see him smile at the other children as if saying to them "Good job. Keep up the good work". 

How can he not be angry? How can he not resent those who can do so much more than him? Why do I have these horrible feelings and yet, my sweet angel does not? I know there are so many other little children out there that have it so much worse and I have seen it first hand when Caden is at the hospital and yet, I still cry as if no one out there has it worse than Caden; or better yet, worse than me.

These are open and honest feelings that I have at times. Caden is perfect to me despite his limitations but it would be a lie to say I didn't wish for more for him. I just want a small miracle; nothing impossible, just one little step forward. I do not expect to wake up one day to find Caden chasing his brother or having a conversation with his sister. No, all I ask is to wake up one day and find Caden moving somehow, someway across the floor; or sitting for a few minutes on his own; or simply saying "mommy" and giving me a hug. Simple wishes, simple miracles I have witnessed from other children like Caden. 

This is my UGLY; jealous, bitter and angry at those who struggle and have their own limitations. I am not proud of these feelings and I know most will not understand, many will be offended, but maybe a few will relate; maybe a few of you understand these emotions and I hope you know you are not alone.

Tomorrow is a new day and I hope to see the grass as green on my side as that of my neighbors. Maybe tomorrow his miracle will happen. This is the hope that keeps me going; the hope that I hold on to. Yes...tomorrow will be a wonderful day filled with magic, memories and moments because miracles do happen.

BENDY BOY...

For a larger picture click the following link
Why The Zebra? 

When you have as many diagnoses as Caden, you have a lot of Awareness Months. In March we "celebrated" Cerebral Palsy Awareness Month, we were a part of Rare Disease Day, in October we honor Dysautonomia Awareness Month, but May is a particularly important month for Caden. May is Ehlers-Danlos Awareness Month and we believe it is the Ehlers-Danlos, and the many symptoms of this genetic disorder, that have affected Caden's quality of life most.

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Symptoms of EDS

So what is Ehlers-Danlos, you may be asking? To be honest with you, until about three years ago I had never heard of it. If it hadn't been for a urologist who suggested that Caden's brother, Ethan, may have the disorder, we may have never even thought to look into it for Caden.

Ehlers-Danlos is a connective tissue disorder which affects about one out of every 5000 people. It genetically affects the collagen of the body. Collagen is the "glue" which holds the tissues of the body together. In fact, 80% of our body is made up of collagen, so if there is a defect in the make up of the collagen, a person's entire body is affected. Skin, muscle, ligaments, blood vessels and every other tissue of the body is weakened and defective because of EDS.

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Classifications of EDS

Caden has been diagnosed with Type III - Hypermobility

Three years ago, and after two failed inguinal hernia repairs for Caden's brother, Ethan, a urologist suggested that maybe Ethan had a connective tissue disorder which was not allowing the tissue to heal properly. We decided to take both boys, since they are identical twins, to a geneticist. Because the boys were less than a year old, she did not feel they had Ehlers-Danlos, but rather were flexible as most babies often are. Fortunately, the third attempt at Ethan's hernia repair was successful and because of this we put the notion of the boys having a connective tissue disorder out of our heads.

This was until about this time last year when we noticed Caden was regressing. Prior to his regression he had begun to take a few supported steps, had a small eight word slurred vocabulary and was beginning to army crawl; all very delayed milestones but being he has Cerebral Palsy, they were milestones nonetheless. What we didn't understand was why he was regressing and had all of a sudden, lost these skills. Cerebral Palsy is a non progressive disability and children with CP will make little or no progress but should never lose milestones gained. We began looking into what else could possibly be going on with Caden and that is when Ehlers-Danlos popped back up in the picture.

We presented this idea again last year to the geneticist who originally looked at the boys back in 2011. She was still not convinced Caden had a connective tissue disorder. Where it becomes difficult to diagnose the type of EDS we felt Caden has is that there is no genetic test for it and it is simply diagnosed based on family history and symptoms. One month later, we had Caden transferred to Cincinnati Children's Hospital where one of the best EDS geneticists in the country finally did diagnose Caden with Ehlers-Danlos Hypermobility. In fact, the letter she wrote states that she is without a doubt convinced he has EDS. EDS Hypermobility affects about one in every 10,000 to 15,000. Apparently I have EDS Hypermobility but am fortunate in that it has not dramatically affected my quality of life. But for Caden, it has. Caden has many symptoms of EDS including a blood disorder, capillary fragility, Postural Orthostatic Tachycardia Syndrome, Strabismus of the eyes, brittle bones, hypermobile joints, Neuropathy, easy bruising, Hypotonia, fragile skin, poor wound healing, Gastroparesis, Irritable Bowel Syndrome, Cranial Instability and Dysautonomia. (Click on any of the bold terms to better understand what they are.)

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EDS Facts

Now you would think we would have been devastated by this news, when in fact we were relieved. EDS explained many of these symptoms Caden was having and it put a name to an otherwise undiagnosed little boy. It tied most everything up into a "neat" little package. Of course, there is no cure for EDS and all one can really do is try to manage each of the symptoms, but at least we had some idea of where to start.

One year later and still many doctors are still not convinced Caden has EDS, but we are. EDS does not explain everything that is going on and we are still waiting to see what the genetic study shows, but we have begun the process of finding doctors who are experts in this rare disorder and we are working towards finding ways to best manage Caden's care.

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May is EDS Awareness Month

So to honor all those suffering from Ehlers-Danlos, I would like to dedicate this post to you.