HIS GIFT TO ME...

For years I had wondered...what was my purpose in life? Many of us have pondered this ultimate question. For most it has taken years to find the answer; some will never know. For me, it took thirty seven years to understand why I had been placed on this great Earth. But for Caden, I believe, his purpose was determined the moment he entered the world. Caden, and so many other children like him, offer so many simple life lessons; ideals to live by. 

I have always considered myself a good person, caring, compassionate and thoughtful. I was raised with morals and was taught to lead by example. I have made mistakes, but have learned from them and allowed them to help me grow as a person.

However, since Caden, and the world he has allowed me to be a part of, have entered my life, I have learned more in three short years than I had in the thirty seven prior.

This is Caden's gift to me.

Caden has taught me...

1. To take each day as it comes...      

    

I have always been a dreamer; my life mapped out in my head. Everything had a plan. Because of this I was often disappointed when things did not work out as expected. Because of Caden, I have to live in the "now". I don't know where we will be tomorrow. It is unfair to visualize what life will look like for Caden down the road. Caden has his own plan and will work at his own pace. Today is what matters. The fact that I have my son with me TODAY; that I saw him smile and was able to hold and comfort him is what matters. Tomorrow will come, yesterday has happened, but we live in today and I have learned to embrace the "now". I am no longer disappointed because I don't have a big plan. I am HAPPY for today.

2. Perseverence, determination and to never, ever give up...

I have always been a determined person but in a very different direction. As with most, I would set goals and work towards meeting those goals. I rarely gave up. What has changed in me now is how I persevere. It is with an undaunted drive like none I had ever known I had. I will not allow anything to stand in the way of doing right by my son, or any of my children. The fight in me and the fact that my husband and I have never given up that fight has kept Caden alive. We do not allow those to tell us there is nothing that can be done. Where there is a will...there will always be a way and we will find it.

3. Confidence, strength and to never stop questioning...

I have always had confidence. However, I cared all too much about what others thought of me. I aimed to please even if it meant surrendering my ideals and what I knew was right. It sounds awful, but I don't care as much anymore about what people think about me. Caden's journey has showed me that accepting what others say and believing that others, such as doctors, know what is best for him, may not be what will help Caden. My husband and I know Caden best. He is OUR son. We are his voice, his advocates and we will never stop questioning those who feel they know what is best for him.

4. Patience, perspective and to let the "little things" go...

Those who know me know that I am not always the most patient person. I am the definition of a Type "A" personality; a perfectionist who expects everything to be a certain way. Caden has showed me that it is okay to let things go and that life is messy and often unorganized. Perfectionism is nothing more than a fictitious fantasy. I have more patience and try to put things into perspective. Caden will grow and develop at his own pace; the simplist little things he can do are still things HE CAN DO. Many parents hope, or downright expect, their children to be scholars, star athletes or talented musicians. All I ever want for my children is for them to be HAPPY.; for them to enjoy the little things in life; to smell the roses; to play and to use their creativity and imagination. My children do not need to be the smartest or the best. They are THEIR BEST and I would rather leave this Earth one day knowing I allowed them to laugh, get messy and explore the the world around them than expected them to over achieve and be something they're not. A child's laughter is greater than any skill or talent. HAPPY and hopefully HEALTHY is what truly matters most.

5. Kindness, forgiveness and generosity...

Caden's journey has not been easy and has affected us financially, spiritually, physically and emotionally. However, his journey has allowed me to meet so many wonderful and amazing people; people who, otherwise, may have never entered my life. Many are strangers whom I've never even met. His journey has also opened the eyes and hearts of so many of our family and friends. I believe that anyone who has become a part of Caden's life has grown a little from following his journey. The many people in our life have given so much to us in so many ways. It has shown me that the world is still a good place despite what the evening news may show and that there are more kind and moral people than not. I often tell people that if every person spent a day walking through a children's hospital, the world would be a much better place. These children open you up to a world of purity, innocence and hope beyond measure. Despite what these children endure, they smile, laugh and forgive. They FORGIVE. It is hard for me to forgive but I watch Caden smile up at the nurse who just stuck him repeatedly with a needle and I believe he forgives her. Caden has taught me that forgiveness allows us to move forward.

6. Faith, hope and that life is much bigger than me...

This may stir up some discussion but I have often questioned why God allowed this to happen to my son. I don't understand how God could allow a little boy like Caden to struggle every day and to miss out on so much of what a little boy should be doing. My faith has been tested and I want to believe, but it has been hard. Lately, Caden and so many of the little children that have entered my life, have given me hope and something to believe in. I don't know why what happened to Caden happened and I may never understand but what I do know is that life is bigger than what I know. I believe that there is more and that maybe everything does happen for a reason. I look into Caden's eyes and there is so much hope. Maybe miracles do happen. I believe in them. It is what gets me through each day. Without hope and the possibility of a miracle, I would be broken. Caden's spirit rises within him and lifts the spirits of those around him. He is more than just a little sick boy with special needs. He is a hero, a teacher, and an angel here on Earth.

7. To smile more and complain less...

I have to. Caden does. Many people don't understand how we do it; how we get up each morning, go about our day and continue to smile. It's simple. We are very lucky. Caden is a part of every day of our life and we are grateful for this. We don't know how much time we have with him. We pray for a lifetime but know it's not that simple. I value every day I have with him. I enjoy the DANCE. I appreciate the RIDE. Life is precious; every moment of it. It is a gift to treasure and one that can be taken from us at any time. Although Caden's journey has taken it's toll on all of us, I have never SMILED more in my life.

8. To listen and to truly see the world around me...

I have always considered myself to be compassionate but because of Caden I allow myself to become a part of so many more lives at a much deeper level. I listen to what people have to say, I value their ideas and have come to understand that no one person's life is any less important than another's. I do not truly know what goes on deep inside the life of another person and therefore I do not judge. Caden has allowed me to open my heart to others in ways I never knew possible. Caden has opened my eyes to a different world; a world I new existed but one I never truly understood. Caden's world is simple and pure. Children with special needs, children who are chronically ill and children with terminal illnesses define the true meaning of unconditional LOVE. 

9. The meaning of heroism...

Few are more heroic than a child fighting for his life. Caden has endured more in three years than most do in a lifetime. He does not allow setbacks to stop him. He is a warrior, a champion, a winner. I look up to him. He is my HERO and always will be.

Caden met one of America's hero's

10. To live life to the fullest without ever looking back...

It is hard not to wonder what might have been. What if I was able to keep my babies inside me for just a little bit longer? What if whatever caused the brain bleed hadn't happened? What if I had stayed with him and his brother and sister every minute while they were in the NICU? What if the doctors listened to me when I first knew something bigger was wrong? What if....? If I allowed myself to do this, I would not be able to enjoy the beautiful gifts I've been given. I have learned to believe I have done my very best. I have accepted what I can not change. I have forgiven myself for what I could have done better. Caden is the most amazing person I have ever known. He, along with his brother and sister, are the greatest thing I have ever been a part of. They are a gift I will treasure no matter how hard each day is. I am the luckiest person I know in that I have been touched so deeply by one little boy who has given me so much in such a short time. I am a better person because of Caden. I believe many people are better because of him. Caden has touched so many lives; has impacted so many people and has given so much to the world around him. His spirit shines within me, it guides my way. He is the light in my dark. He has brought back my faith and has allowed me to believe again. Yes...I am the luckiest person in the world because...

Caden loves me...

                                                                  

BACK TO "NORMAL"...

Finding the time to write has become more difficult over the past two weeks and that is a good thing. It means Caden is home and things are getting back to "normal". Although Caden's five week hospital stay was not as productive as we had hoped, we were able to eliminate possible diagnoses and are now in the process of reaching out to other doctors with fresh eyes and hopefully fresh ideas.

We will be traveling to north Jersey next week to meet with a highly regarded pediatric neurosurgeon out of Columbia-Presbyterian. Caden's neurosurgeon at CHOP has reached out to Dr. Anderson who seems anxious to meet our son. He is an elite spine and neck surgeon who can hopefully offer more insight into what may be causing Caden's declining health when upright. Our concern is that he may not be familiar with Caden's connective tissue disorder, Ehlers-Danlos, which is crucial in getting to the bottom of Caden's mysterious medical behaviors.

We are also in the process of reaching out to Dr. DiLorenzo, a top notch pediatric gastroenterologist out of Columbus, who is known through out the world as the doctor who has put a gastric pacemaker in a child as young as two. We do not know if Caden would be a candidate for a pacemaker and his G.I. at CHOP does not seem to think so, but we want to hear it from the horses mouth. If Dr. DiLorenzo does not feel he can help Caden with his motility/vomiting issues, then we will let it go; at least for now.

Our annual trip to the Cape May Zoo

Caden at the park

So how are things now that Caden is home? "Normal" I guess. Caden continues to vomit daily, is up most of the night and is happier and more active when laying flat. In other words, he is the same Caden who we brought to the hospital back in the beginning of March. As I always say when people ask how Caden is doing, "Caden is Caden".

That's not necessarily a bad thing. "Caden is Caden" simply means he's stable and for Caden, that's a good thing. Stable means we are not headed to the hospital. Stable means we can go about our everyday "normal". 

On the way to Nana and Pop's for Easter

Our "normal" is like most in that it is our routine. It's what works for us. It is the routine I find boring after doing it for months and the one I long for when Caden is in the hospital. It means lining up the kids clothes for school, making lunches, giving baths, the never ending potty training, filling prescriptions (the pharmacists at Walgreens know me all too well), taking the boys to therapy, driving the kids to school and going to work. In fact, I might have been the happiest person walking into work today because it was "normal". When I'm at work it means Caden is home... being Caden.

It feels good to be together again as a family. It is one of those things that when deep into our daily routine, I often take for granted. It is something that today, I cherish. I know that Caden has a very long road ahead of him but for now he is home, enjoying the world around him; taking in all he can. Today was a good day because today was "normal" and Caden was Caden.

The kids got fish for Easter. Caden named his Dusty.

ONE CHILD...ONE CHOICE

Today was not a good day. Honestly, most days lately haven't been all that good. But today, was a particularly bad day. Don't worry...Caden is okay, at least as okay as Caden has been. This was one of those days when we started thinking about choices again. Choices we are not ready to make. Choices we should never have to make.

You see, I can ask Emily what she wants for breakfast and she will tell me. Ethan will tell me he needs his Tigger because he is tired. Like most three year olds, they can tell us what they want, what they need and to some degree how they feel. At times they drive us crazy vocalizing their needs and more particularly their wants, but they can tell us. They tell us by whining, screaming, begging, hitting, biting and throwing tantrums. That's what they do and as much as it frustrates us, it is a gift that they are able to express themselves.  

Caden can not. Caden can not tell us what he needs, what he wants or even how he feels. Yes, he cries and laughs but even that is inconsistent because he has emotional lability which means he doesn't always have control over his emotions. Where Emily and Ethan can tell us the simplest things they need, my little boy who has to make the biggest quality of life decisions, can not. Those decisions are up to us. We have to make them for him.

Caden needs to go home. This much we know. This hospital stay has done more harm than good. The sick little boy we brought in almost five weeks ago is still sick. In fact, he's sicker with more damage to his already fragile little body. He was scheduled to have his Broviac removed today; the first step in getting home. Last night when the nurse came in to do vitals I noticed he felt warm. He had a fever and when a patient has a central line there is a risk that the fever is a sign there is a central line infection which can be very dangerous. They started him on I.V. antibiotics and Caden settled in for the night.

I was worried in the morning that they would delay the surgery due to his fever but the doctor assured me that the surgery was still going to take place and that his fever only justified the necessity of taking the central line out. Rounds ended and I sat waiting for the call to surgery.

And then I was told the surgery might not take place today. Apparently there was an emergency that would take up Interventional Radiology all day. Not only that but Caden's surgery was then delayed two days and would be scheduled for Thursday. Thursday? Seriously? I was hoping to get Caden home on Thursday.

So needless to say, the poor twenty some odd year old resident who drew the short straw and was forced to tell me the bad news got quite an earful from me. If you live in the Philadelphia vicinity you may have actually heard me. I lost it. I mean, full blown, all out lost it. 

Then this resident tried to "calm me down". She attempted this by saying "I know your frustrated but...". This must be what they teach residents to say to upset parents in How To Be A Doctor 101. I know this because I have heard this line over a hundred times. "Frustrated"...really? I get frustrated when I am stuck in traffic or when I can't get a stain out of clothing. No honey...I am NOT frustrated. This is NOT frustration I am feeling; it is DESPERATION. I am desperate for answers. I am desperate for hope. I am desperately trying to save my son.

You would think the resident would have been smart enough at this point to stop talking and either just listen or leave the room. Instead she decided to say "I understand how you feel." Do you? Do you have a sick child who no one can seem to help? Do you? No, my dear, you do NOT understand. I hope you never have to understand. Four years ago, I didn't understand either.

After I "calmed down", the doctor came in. She sat down and we talked for a while. She told me I was a wonderful advocate for my son. I told her I was not advocating for him, I was fighting for his life. I spoke honestly about how disappointed I was in the care my son was receiving and the medical profession itself. As tears poured down my face, I asked why no doctors ever really touch my son, hold him or try to get to know him. I wondered when they lost sight of why they became doctors in the first place. I questioned the purpose of this children's hospital. I felt that all that truly mattered were the numbers and statistics. My son and the others like him are not numbers, they are children. They are children who dream, who hope and who, despite the hell they go through, somehow, someway, find a reason to smile. When did they get lost by the system? She did not have any answers. 

I then asked, as I held my peacefully sleeping little boy, when would it be time for us to stop? When do we say he's had enough; been tortured enough? When was it time to just walk away? Matt and I talk about this all the time. Not because we want to but because we have to. We want Caden to decide when he wants to stop looking for answers and when it's time to just live the best life with what time he has. It is his life; his body; his spirit that has been through hell. This should be his choice. But we aren't sure if he's already tried to tell us or if he wants to keep fighting. 

I have been with him almost every hour of every day these past five weeks. I have watched him, searched his eyes, looking for an answer; looking for any sign. And I still don't know. 

We have a few more doctors to see. We will find a way to go to Ohio and Illinois to see some of the best doctors who specialize in what we feel is wrong with Caden. The fear in doing this is what do we do if they say there is nothing that can be done. Do we stop looking for answers? Or do we keep searching for something that may not exist?

My heart tells me that time is running out and that we need to allow Caden to smell the honeysuckle, feel the sand between his toes, listen to the peepers sing on a warm summer night and watch the sun set. We need to make his wishes come true. We need to be together as a family for as long as we are allowed to be. That quality of life far surpasses quantity. I truly believe that but what if I'm wrong. What if we stop looking and we miss an opportunity. We would never forgive ourselves.

That's when me head tells me that there must be an answer somewhere. If they could put a man on the moon forty-five years ago, they should be able to, at the very least, figure out what is wrong with our son. But my fear is that while we are searching for answers, Caden never knows what it is like to just live; to live without pain; to live without fear. And that he never gets to smell the honeysuckle, feel the sand, hear the peepers and watch the sun go down.

This doesn't mean we are giving up. We know we can't and we don't want to. We are still hanging on to the hope that someone, somewhere has an answer and a way to help our son. We will continue to search. But we must keep in mind the value of experiencing life and all its wonder. Caden is a three year old little boy and despite the fact that he can not always tell us how he feels, we know he does feel. We know that there is so much for him to see; so much left for him to experience. And we don't want him to never have the opportunity to be a part of it.

And therefore...

Sometimes...

There is beauty in walking away...

IN SEARCH OF DR. HOUSE

I was laying with Caden, in his hospital bed, waiting for him to fall asleep. I was watching an episode of "House" when I realized that this was who I needed my little boy to see.  In one hour, with commercials, a man and his team solved a very complicated medical case.  They not only diagnosed the patient, but miraculously healed the near dying, young woman.  All of this in one hour.  Caden has been in the hospital for four weeks.

Now we all know that reality does not work this way but the means by which he and his team reached a diagnosis is feasible.  All you really need is time and a white board.

I know this seems ridiculous but when you think about it, it could work. I often suggest that ALL of Caden's specialists should get together, with Caden, in a room with a white board and marker for one week. They could all spend 24 hours a day watching and getting to know him. They could see, with their own eyes, what I try to describe to them. Symptoms could be written, diagnoses could be discussed and treatments could be suggested. As with a jury, they could could work towards reaching a verdict. One that could hopefully help my son thrive and improve his overall quality of life.

I am disappointed in the medical profession as a whole and I know I am not alone.  I realize that much of what takes place is dictated by insurance companies, policies and law, but the lack of the personal side of getting to know the patient is what is most upsetting. So I guess, a Dr. House with a heart would be ideal.

On an outpatient basis, Caden sees his various specialists three to four times a year.  When we arrive at an appointment, it can take up to three hours before we are even seen.  This is unacceptable, especially when the patient is a child.  With children like Caden, who are complex and often see three or four doctors in one day, it becomes impossible and we're often left cancelling appointments we have waited so long to get in to.

Yes, I have been know to cause a scene at times.  I am proud to make my opinions known to others "patiently" waiting that I am unhappy with the lack of respect towards my son.  I have even been prompted to wait in another room so as to not cause an uproaring of angry mother's.

So after waiting for an absurd amount of time to see a doctor, we are transitioned to a little room that is supposed to be comforting to a child. We continue to sit as we wait for the nurse to come in.  She comes in, asks us a bunch of questions that we know we will have to answer again for the doctor, and types away on the computer.  Eventually the doctor comes in, asks the same questions, types more into the computer, yells at me for talking too fast saying he can't keep up with his typing, takes a few minutes to look at Caden and then comes up with suggestions as to what to do next. Usually these suggestions are nothing more than bandaids to temporarily hold Caden over until the next visit. Medications are prescribed and we are making our way towards the door.

So for about fifteen minutes, four times a year for a total of approximately one hour, his doctor is hands on with my son.  That is too little an amount of time spent on a healthy child, let alone a medically complex, chronically ill, medical unicorn.  

On top of this, doctors are so specialized that they only look at their "piece of the puzzle" and I often feel, at least in Caden's case, that if their piece doesn't neatly fit into solving the puzzle, they pass the buck onto some other specialty.  It is as if taking the time to work with the other specialists to put the puzzle together is way to time consuming and not worth the effort.

This is where diagnostics come in.  Caden is part of what's called Integrated Care, also known as Complex Care and Diagnostics.  It is a fairly new specialty because twenty years ago most children like Caden did not survive past infancy.  The responsibility of the diagnostician is to take all of the information gathered by the specialists and try to tie it all together.  When Caden is inpatient, they coordinate all of Caden's services, tests and care.  I understand it is not an easy task, but as problem solvers they should want to rise to the occasion.

Caden's current diagnostics team and his neurosurgeon are on board with my diagnostic theory.  This took some convincing along with ruling out many other possible diagnoses.  The problems now lies in how to test for the possible diagnoses and if confirmed how to treat a child as young and small as Caden.

His current hospital does not feel they have the means to properly address Caden's issues and are now reaching out to doctors across the country. So, what next....

First, we need to get Caden home.  Because I am pushing to take him off TPN before going home, this will delay his discharge.  Caden will most likely be hospitalized for at least another week.

Then, we have the task of finding a doctor somewhere who feels he has the ability to meet Caden's medical needs.  We will search for a pediatric doctor who specializes in Ehlers-Danlos and other connective tissue disorders.  This doctor, depending on his specialty, would then need to direct us to someone who could possibly treat Caden's symptoms and/or condition.  

Now, in a perfect world, these doctors would all be in the same hospital, located within walking distance of our house.  In reality, these doctors are all over the country.  I expect in the next few months we could be traveling to several of the following states: Ohio, Illinois, Tennessee, New York, Delaware, Utah, Maryland and Washington.  These are the states with doctors who may be able to help our son.  Of course, we will not go to all and hope to stay as close to home as possible, but we need to do what's best for Caden no matter where the road may take us.

Somewhere, out there, is the real Dr. House; one with compassion and understanding.  That certain someone who has an answer and has a way to help our little boy.  We will never stop trying. We will never stop searching.  But we will always weigh the value of childhood and the happiness and innocence that comes with it.  Caden will tell us when he's had enough.  I know he will. And if that day comes, we will honor his wish.