Pick your head up

When you look at your child for the first time, you count 10 fingers and 10 toes. You examine them and they are the most beautiful creatures you have ever laid your eyes on.  That is what I saw. Perfection.

Flash forward 14 years, and he looks amazing. He grew, he is muscular, active, the best he has ever looked with the  exception of the first glance of perfection. However we are at the cardiologist appointment, loaded down with EKG leads which read out Complete Right Bundle Block. The thought now immediately swarming in you head is, well, that isn't good. Followed by your sons head hanging low, and voice sounding, that can't be good.  For when you have a cardiologist appointment, it isn't just a little listen, it us a full blown ECHO...this particular ECHO was longer in duration than normal.... again swarming in your head, not good....and while you watch the test unfold, you see the regurgitation, while trying to keep a poker face. Why? Because your 14 year old knows your facial expressions and knows when things just can't be good. As a parent, you keep your composure and play the hand you are dealt when your child has a Congenital Heart Defect. You sit in the cold room trying to keep the tensions light, while waiting for the cardiologist to come in and deliver the news.... you child's heart was repaired a short 20 months prior, leaving him with a war wound directly down the center of his chest, but there is now a right bundle block and regurgitation that you witnessed with your own eyes.  When the cardiologist enters it's all business....a little listen again, for what I believe is to make  you all the more nervous....only to tell you that the mitral valve still has a mild leak or regurgitation but his pulmonary valve has gone from a mild leak to a moderate regurgitation and now there is a complete right bundle block...his heart is working harder and has electrical misfires. His head is hanging low absorbing what she is diagnosing. When you see is face, it is full of anguish of not wanting to go through it all again. So now we need a stress test and holter monitoring. I say we, because he is 14 and while it might be his body, we do this together regardless of what he may think. I endure a different battle, that battle that you see what you believe to be perfection, but broken.

So now he is acting indifferent, standoffish even a times, down right nasty. What's wrong I ask? I get silence. Ignored. It is hurtful because I would trade places with him in a fraction of a second. I can't help feeling hurt. I understand he is growing up, getting more independent and certainly doesn't want to be sickly. You know the statistics, you know there is no cure for CHDs. We have done so much awareness and research, you know what your battle is and the challenges you must overcome. Breakdown, it's okay, because I will never leave your side.

So  here we are, going to get the new tests soon an the results are yet to be seen... how will this forever alter our lives again? Know this, even with your head hanging low or how not good this could be; it's  you and me. You are a warrior, a fighter who never backs down and always gives 110%. A broken perfection.

He is upset with me

He gets upset with me when I cry. I like to believe I am a strong person, however there is one situation that can bring instantaneous tears and he gets irritated with me.

Hopefully one day he will know the feeling of the love for a child and the overwhelming feeling of wanting to protect them from anything that may hurt them. I truly hope he never has to deal with having to care for a seriously sick child.

Let me tell you why I he gets upset with me… he feels like I shouldn’t cry because he never did. Yes, he was brave and didn’t let him emotions overcome him. He is a strong kid and certainly doesn’t act as if he has a heart defect, he never really did. He doesn’t understand how after a year, I can still be so overcome with emotions because it happened to him, not me.

Let me now tell you why I get upset … at no point in your life when you have a child are you ready for a doctor to tell you, your child is seriously sick, and when you hear those words, you can’t believe it. I guess that is the only emotion we had in common during this process, initial denial.

At no point in your life when you have a child are you ready for a doctor to tell you they are going to have to stop your child’s heart to fix the multiple holes in his heart. At no point in your life when you have a child are you truly ready to leave your child on the table to have them stop his heart, especially when you see the utter terror in his eyes. At no point in your life are you ready to wait in the waiting area for the surgeon to talk with you. At no point in your life are you ready to see your child for the 1 st time after open heart surgery… never ever. At no point in your life will you close your eyes or answer the phone and not worry about if he is okay. At no point in your life will you be able to talk the surgery and not have a rushing memory of your frail child, cut open, wired and glued shut, with tubes everywhere, swollen and gray, with oxygen helping him breath, laying in the hospital bed with noises from every possible monitor, drugged to prevent from feeling the pain, unable to sit up or even stay awake. At no point in time should a parent have to have this re-occurring nightmare, but there isn’t a day that you don’t think about all of it.

I don’t really care if he gets upset with me over my emotions, because I am his mother. I was the one who carried him for nine months, who loves him and takes care of him for 14 years and counting. I was the one left him on that table knowing they were going to stop his heart and there was a chance it wouldn't start back up. I was the one who walked alone down the hallway into the waiting area full of people staring at me and wanting me to tell them what happened behind the closed doors of the operating room. i was the one who waited for the surgeon to tell me it went well but we may need to have some additional surgeries down the road. I was the one who never left his side during his entire stay in the hospital and stared a cut and mended boy while he slept; helped him do the things he just couldn’t do until he was well enough.

So be upset with me…. but don’t think it didn’t happen to me just because I don’t have scar.  And i will do it all again, when  the time comes because i love you so much i cry thinking about what you had to endure and what is yet to come...i love you so much that i would give you my heart if you could endure no more. 

Dakota, our dog, our family

When you have a pet, dog, cat whatever they become part of your family.  It is our responsibility to love them, feed them, keep them healthy and free from pain and harm.

 

At the moment you realize your beloved pet is under the weather, a mired of thoughts run through your mind… did they eat something that didn’t sit well with them? Do they have a cold? Are they just getting old? Unfortunately they can describe their feelings, but just look at you helplessly with big sad eyes. It is your responsibility to take then to the vets, with hopes it is something simple that an antibiotic can correct. Not all experiences are that simple, ours was not….

 

Thursday all was good in the Dakota Enciso world, or so it seemed. She is 8 years old, maybe it seemed she was a little slower these days but she was still able to catch a rabbit just a few short months ago and place it ever so gingerly on the porch as a lovely token of her affection.

 

Friday, on the other hand was a not as good as Thursday.  Dakota was just off. She seemed dazed but still came out side and socialized with us, not in her normal spunky manner, rather she was reserved and lost almost.  I noticed her anti-social attitude immediately and gave her a little extra  love and all of the kids were home and loving on her and even the girls slept on the couches to comfort her… because everyone needs a little extra TLC when you feel under the weather.

 

Saturday was worse, I woke to see Dakota listless and dazed. She sat awkwardly with her neck sticking out a little. Her belly looked weird too. So I reached around her to see if I could feel a lump, but felt nothing.  Dakota was not the skinniest of dogs, she had a little extra roundness so I wasn’t initially off put by her belly.  I took her outside and she went to the bathroom. No blood, good sign.  She immediately wanted to go back inside, not like her at all. Once inside she sat next to the couch in the odd position again. I thought…  since she dug a small hole just last week, maybe she ate a mole and her belly was bothering her.  She sat there for 2 hours… 2 hours? Now, she is not the most active dog but she is not statue like either. The kids were playing outside and nothing, not her usual alert bark that she is famous for when a leaf blows past the window.  I started to worry a little and the kids took extra time to love her and dote on her.  She didn’t want to eat, but would drink. Okay, she is still drinking, but completely listless, just looked exhausted. Then as the night progressed, she started to breath differently. Almost as if she was taking deep breaths for each breath… again I checked her belly and she didn’t wince or make a sound, but I knew something was not right.

 

Sunday, the same, but she mustered up the energy to go on a brief walk with Maddy, brief.  She drank a little, didn’t want to eat but mostly sat there listless and staring at nothing. I thought for a while she actually started to look better, but then she wouldn’t come in, she would step up onto the porch and just laid down on her side.  Finally she jumped up and went inside when she thought we were all going to go in. After dinner we decided it was best to call the Vet. I know it is Sunday evening and we also know that we didn’t want to leave her in this condition while we went to work Monday… she was just not right.

 

We took her to the emergency animal hospital and she laid on Madison's lap for a while. I am sure this comforted her since she wasn't well traveled. Once at the hospital we told them everything we noticed over the course of the weekend.  They doctor examined her, looked at her gums, which were unusually lighter than normal, felt her belly as I did, took her temperature, gave her a CT scan, took some blood and did some other tests and came back in pretty quickly to the room where they left us. Not the waiting room, the exam room. That bothered me. He came back and said her gums were white which is anemia. That when he did the CT scan  it was alarming and he showed us pictures. Her spleen was not in the appropriate location and the black surrounding her spleen was blood, that she was bleeding  into the abdominal cavity, that she had was called hemanangiosarcoma, and cancer has spread everywhere, blood was surrounding her liver, lungs and pericardium sac and a tumor ruptured causing her to bleed out internally.  He gave us some options to treat the cancer.

1.       Surgery to remove the spleen and drain the blood. This option yields about a 20% that she would make it through the surgery tonight.  If she makes it, then a course of Chemo.
Her survival time from was 2 weeks with surgery without Chemo.  Survival of 2 months with surgery and Chemo.
2.       Euthanasia, because he didn’t believe she would make it the night, definitely not more than 2 days in her current state.

I wasn’t really prepared for all of this… I knew she wasn’t right, but this was all very sudden and so final.

 

We discussed the options, 2 weeks with a limited quality of life? Two months with a limited quality of life? What kind of pain would she be in after recovery, if she even made it? What kind a pain is she in now? How much more pain do we want her to have to endure?

 

They brought her back to us, and we had some special time with her, kissed her, held her, pet her, apologized to her all while she labored to breath and refused to lay down cause she just couldn’t breathe with all the blood building up inside.

 

We made the very difficult decision to ease her pain forever. Allowing them to take the life of a loved one is not an easy task. You feel guilty. Helpless.

 

Once again, the doctor came in and sat with us.  He explained what the procedure would be like, how she might act and how it would go.  He sat down on the floor with us and took her left paw and administered 3 shots. One to flush, one a sedative and one to ease her pain forever….and she yelped ever so lightly and fell into my arms where I held her as she took her last breaths as we sobbed.

 

Seeing her laying there at peace was difficult, she was our spunky girl. But after seeing life leaving her for the last three days it was the humane and loving thing to do for our Dakota.

 

This was not the outcome we wanted for this past weekend. This was not the outcome we want for Dakota. But the very last thing we wanted for Dakota was to allow her to feel pain.  Regardless of how much we miss her, her pain is gone and she is running around in digging up holes in heaven.

This evening Madison painted her paw imprint keepsake, we baked it and displayed it in the dining room so we can see our spunky Dakota everyday.

So tonight when you get ready for bed, kiss all your kids, even the four legged ones, because they are only with us for part of our lives, but we are their whole life 

Just getting started

What would you say if I said my son only really started to live recently? What would you say if I said he only started to grow recently? What would you say if I said he only started to breath recently. And he is 13?

A very short 7 months ago, Gregory had open heart surgery to correct the multiple holes in his heart. That is when he began to live. Maybe in his mind, that is when he stopped living the life he wanted to live, but that would not be accurate. That would be his "hard knock life" of no more wrestling.... however, that is when his life truly began.

The last 6 months had their ups and downs, he had to overcome pain and medication, he had to learn who he was and what he had to face, he had to come to an understanding that the potential for additional procedures is real. He had to learn to pick himself up when he was feeling down and keep pushing. He had to learn to accept what he can no  longer do, wrestle, because of the damage it can do to his mended heart.  He had to face the first CHD child that we knew of, who was right in the next room in the hospital, had lost his battle and passed away from Congenital Heart Defects. That was a terrible day. Knowing the child, the parents, having the bond of the same birthdays and hospital stays.... wondering why he lasted 13 years with multiple holes in his heart and the little boy next to him didn't make it.  There were some rough times over the last six months. There were also many ups. He healed and thrived. He bounced back and excelled in school. He gained a confidence he didn't have before and grew into his serious yet quirky teenager. He grew, not only is height but finally put on some weight to, I don't believe he ate as much in the first 13 years as he has eaten in the last 6 months. He doesn't get as flushed when he is playing, like a year ago. His heart is working significantly better now. He is living significantly better and his life is only really getting started.



Sure

Balloons in heaven

This Sunday, Mother's Day, we are will be sharing our day with another Mother. On November 11, 2013, a little boy, Ollie was born. He was born with hope, fight and will to inspire others. I met his amazing parents at Children's Hospital, and honored to call them friends. We will be celebrating Ollie's Birthday and filling the sky with a balloon release.

Ollie has been residing in CHP's CICU for 6 months now. He has spent his entire life in the hospital, too sick to come home, diagnosed with Total Anomalous Pulmonary Venous Return, a Congenital Heart Defect. His parents have sought every avenue for help yet they have received news that there is nothing more the Doctors can do for Ollie, and they will be "letting him go" on Monday. 

People have spoken of this bond children have with other Congenital Heart Defect children. I have seen it first hand, as my Gregory has taken a liking and interest to Jameson, a local boy who underwent a transplant. I have never really have seen Gregory so affected about anything before. Gregory and Ollie shared a wall at CHP in the same wing, they share a birthday, the share the fact that they both fight Congenital Heart Defects. There are no other words but he is just mad and sad, to the point of tears. Furious that Ollie is losing his battle, sad to know he will pass; all the same he thinks that Ollie is going to be his CHD Guardian Angel. Most teens would not have such a sincere overwhelming  feeling of loss, but Gregory expressed to me that he relives the night when he was in the hospital and Ollie was having a terrible night.  Gregory was to be getting transferred to step down but there was no time on the unit that particular night; so we sat quietly in our room hoping an praying the little warrior next door would make it through the night. The doctors never gave up, neither did Ollie.... Gregory in his youthful mind and mended but spirited heart wants that once again. He wants a cure for CHDs and a cure for Ollie. We all do. 

On Sunday, Ollie's  6 month Birthday and Mothers Day, we will share a moment with a group of extended Congenital Heart Defect families to celebrate Ollie's life, his fight, his fearless battle, his inspiration for people to love deeply.  We are going to support his Mother, on her first Mother's Day... a very difficult day for her knowing what's to come. We are going to fill the skies with beautiful balloons and let them float into heaven, where they will be waiting for Ollie when he gains his wings. 

The tight rope walk of parenting a CHD teenager

Some days are difficult; everyone has their days when things are just not good. You put on a good front, put a smile on your face and deal with the cards you have been dealt. Even as an adult and parent there are times when you feel as you are going to fail, or have failed as a parent but in the eyes of your children most parents are the “best Mom/Dad in the world”  Everyday it is as if you are walking a tight rope.

As children grow and age, teenagers begin testing and developing the interpersonal and occupational roles that they will assume as adults. Therefore it is important that parents must treat them as young adults. A teenager who thinks poorly of him, is not confident, hangs around with gangs, lack positive values, follows the crowd, is not doing well in studies, is losing interest in school, has few friends, lacks supervision at home is more vulnerable to peer pressure. This is true not only in all children but especially in children with Congenital Heart Defects. They are different, they cannot  or are not permitted to do what the “normal” kids can do… so not only do we parent as the “normal” parents but we encourage what you can do, help build scar self- esteem, worry, question and sometimes are over protective.  It is my job, as a parent to promote and support the physical, emotional, social, and intellectual development of my children from infancy to adulthood. It is my job as a heart mom to protect him and ensure he is being properly taken care of. It is also my job as a parent to allow him to have and enjoy his life as a child and teenager. That is his right.

I believe there are 4 types of parenting styles (Authoritative, Authoritarian, Permissive and Uninvolved.) I believe I subscribe to Authoritative parenting style. - Authoritative parents rely on positive reinforcement with minimal punishment. Parents are more aware of a child's feelings and capabilities and support the development of a child's autonomy within reasonable limits. There is a give-and-take atmosphere involved in parent-child communication and both control and support are balanced.

Last night, we had another moment. Let me begin with a little reference, he is a 13 year old boy with complete AVSD, repair. However there are a few little areas in his atrial wall and valves where there is still leakage. We have been advised against contact sports, i.e. wrestling or football.  I realize that is a difficult pill to swallow for a boy who wrestled for 5 years before his CHD of AVSD diagnosis.  After dinner but prior to taking his sister to Tae Kwon Do, I asked him if he was still planning on attending Heart Camp, in which his response was yes, only to be followed up with “ I want to go to camp like I did before” … and “I saw the Bones shirts and want to go to Steve’s Greco Roman camp again this summer.”   

I honestly was taken off guard and it took me a moment to get my thoughts together… because the last thing you want to do to a child that already feels different, weak, limited and not “normal” is limit them even more. 

I responded, “we will have to check with your cardiologist to see if you are permitted. You know, Dr. Lovig has previously advised against contact sports”.

In which I received a heavy sigh in return, “he might say ok, I wrestled with larger holes in my heart before”. 

  

I responded, “ yes, yes you did, but the very last thing I want is for you to put pressure on your heart, the holes to get larger, you to have a heart attack or worse, and if the holes tear and expand you may need to have another surgery.” 

He responded, “ I am going to need another surgery anyway, so why can’t I just wrestle? Can I just try? I won’t overdo it” 

Looking at his face, he was in total disgust with himself, I wasn’t sure if he felt as if I was holding him back or or he lost all confidence at that moment. I didn't want him to feel helpless and understand where I was coming from, so I responded again, “we can ask their opinion, but I want you to listen to what they say and understand what the potential complications might be for you. I don’t know how you feel inside, and I don’t know what you are truly capable of doing, only you do, but I am your Mom and it is my responsibility to keep you healthy and safe. I want you to live your life to the fullest of your ability and I don’t want that to be cut short because of unnecessary chances. If they say no, maybe you can do another sport?” 

With passion he said, “I don’t want to do anything else, I want to wrestle, Mom. I just want to be a normal kid, like I was before”  

I responded, “we can as Dr. Lovig’s opinion, but I am not supportive of you wrestling. I know your Dad is not either. We got lucky, you got lucky and you may not get another chance like that and that is not a chance I want you to take. If Dr. Lovig approves then fine, but I don’t approve.  However I won’t tell you no, because it is your life and you need to make to your own decisions, I can only guide you and hope you make a good decision for yourself” 

As I walked out of the room, I said under my breath … I hope Dr. Lovig says no… he heard me. 

Rise above tragedy and hurdles and make a difference

Six days ago today, a neighboring district endured a horrible tragedy. Many children were hurt, physically and emotionally. The news surrounding unfortunate event went for on for days poking and probing while children were laid up in the hospitals and in their homes recovering from not only their physical wounds, of which some more serious than others, but the mental anguish that accompanies a horrible experience such as the Franklin Regional Stabbings.

Today our district is honoring these children and acknowledging their bravery. I find this to be commendable. I believe when people need help, encouraged and supported during tough times, communities should gather together in support of them. I believe that not only the children that were intimately involved in the Franklin Regional Stabbings have a long road of recovery ahead of them but the entire school and district need to work together, and enlist the support from neighboring districts and other children to encourage and bully and violence free environment. I have encouraged my children to wear Franklin Regional colors to acknowledge their bravery, perseverance and recovery.To encourage them to grow from the horrible occurrence and move on to be better individuals. No one person is perfect and everyone makes mistakes, but people can make and effort to be better and do better. I believe Franklin Regional can overcome this hurdle.

Four months and two days ago, my son endured his own personal event, his own tragedy a lifetime in the making. He underwent open heart surgery to close multiple holes in his heart. Upon his diagnosis, he was prohibited to walk to school,  prohibited to carry his books or back pack, prohibited to participate in sports or gym class. He pondered for a month prior to being cut open on the statistics of the surgery, the mortality rates and what his limitations might be afterward. He plowed the month away and woke brave on the morning of the surgery to face a challenge no child should ever have to face. His recovery is going well and he was back to school one month from the date of his open heart surgery with no grand show of support. He has physical wounds healing, emotional hurdles yet to overcome. He has medications and limitations, he has a leaky heart and lifetime of disease and potential problems to face. He is a warrior, the bravest of the brave, to walking knowingly into a room not knowing if you are coming out. He may not have an act of bravery that was news worthy, tweeted, facebooked and broadcasted. He wasn't acknowledge by the district in which he is enrolled or any other but he vowed to make a difference. He gave it his all and was heard and acknowledged by local municipalities and our greater metropolis area, our State Senate and Governor, surgeons and staff at CHP interested in his diagnosis and story. He had family, friends, other heart warriors along with their families and his teachers from kindergarten to 7th grade who were encouraging and supportive. He has taken his own tragedy and turned it into something good... to help and encourage others, to promote awareness to fund for research and  he even speaks publicly about the # 1 birth defect in the country and world.

I am confident that if one boy, with limited resources, recovering, weaken by open heart surgery and facing a lifelong battle can make a difference, each of the children that were involved in or effected by the Franklin Regional Stabbings can overcome their tragedy. Together, with not only the encouragement of their district, other districts, government, news broadcasts and social media country wide, they can rise above their tragedy and vow to make a difference. Not only better themselves but help others that suffer from the same battles with bullying and violence.