Shield HealthCare is pleased to announce its 5th Annual Readers’ Choice Contest winners, as chosen by the voting public. We would like to extend our sincere thanks and appreciation to all the dedicated caregivers who shared their stories, and to all those who voted to make these caregiver rewards come true.
Congratulations to our Top 3 Winners with the most votes: Sylvia L., Megan L. and Evelyn T.!
I always wondered what “unspeakable joy” looked like. Perhaps it was a day at a lazy beach somewhere in an exotic land, my husband and I walking side by side, our hands intertwined while our two happy girls ran into the sunset before us. I never imagined “unspeakable joy” would be a four year old little girl, with no words and shining eyes melting my heart. Right before my first daughter turned two, we welcomed into our family another beautiful bundle of smiles and curls. She was as exquisite as her sister and proceeded to reach every developmental milestone early. Then a few days after she turned one she began to have seizures.
It was a very difficult time but I was determined we’d learn how to cope with what I assumed was an epileptic condition. Then she stopped saying words, started to stumble when she walked and forgot how to use her hands. Things got much harder. A year later she was diagnosed with a very rare and severe neurological disorder called Rett syndrome that occurs almost exclusively in girls and leads to impairments affecting their speech, mobility, eating and breathing. Suddenly our lives became consumed with hospital stays, visits to specialists, behaviorists, and all other kinds of therapists. I was abruptly jarred out of my ‘normal’ life into one of full time care giving for a child who needed maximum assistance with every aspect of her life. I found myself in a dark place, grieving for her and for everything she had lost. Then slowly, the mourning gave way to a new awaking, a renewed sense of appreciation for the important things in life. As I released my death grip on the things I once imagined I needed, the things which we couldn’t have, there was room to embrace all we really did have.
True, our life was quite different than other families with all typically developing children, but it was rich in its own way. We learned so much, and we continue to learn every day. We are amazed by our little girl’s big resilience in the face of such difficult challenges. We proudly watch as people unknowingly ask her questions and rather than get frustrated to be unable to respond, she simply smiles back disarmingly. I am also a proud mama as I watch her older sister notice the other kids that are ‘different’ in her class and go out of her way to be kind. My husband celebrates the achievements, big and small, with an excitement that is infectious.
There are frustrations on this journey, sleepless nights, tears, and hurting. But there are also miracles, like watching her in the middle of our living room on her small trampoline bouncing up and down and giggling endlessly, something we had been told she would never be able to do.
I sometimes wonder if I’ll burn out, yet I’ve discovered that caregiving in its purest essence is not only perpetual giving… it’s also receiving. We don’t lose ourselves, or our dreams for life, rather, we receive a different kind of life, a different dream, one that gives us permission to slow down and be fully present in the moment, to be fully alive and engaged, resilient, caring, celebrating, and full of joy, no matter what happens to us in life. I can’t imagine my world without my beautiful daughter; our family just wouldn’t be the same. I now know that in my dream world my definition of joy was once just too small.
Caregiving: more than a job it's an attitude, a way of life and bringing love into the world.
Life can be challenging. People are rushing around and trying to get ahead. This is natural. We often pass by people on our daily routines who are disabled or struggling with illness. But how many people really have any idea of what that must be like or stop to help someone in need? That is where the caregiver comes into the story. Caregivers are everywhere working so hard to give those in need an emotional boost and help them with the struggles of their daily lives.
Having worked in the Seattle Public School System as a Paraprofessional for many years while my son attended Elementary and Middle School, I often was assigned to work with students who were challenged. I remember coming home to my own son and feeling ever so grateful that my child was not challenged. "How lucky I am," I thought. I worked closely with many challenged students and I tried to make them feel special and appreciated. I had the utmost respect for their parents who worked so hard to care for their special needs children.
When my son reached High School we relocated and my son attended a new High School where there was so much peer pressure to "be cool" and "fit in." My son decided to take up body building at this time. It wasn't long before he was buying products on-line for body building. Some months after my son began using these products I noticed he was becoming more involved in body building and not interested in his studies. As the continued to use these products his moods were changeable and his health was in question. THEN IT HAPPENED, he become very ill from these products.
We moved away from this environment and he stopped taking all body building products however things just went from bad to worse. He sought medical attention and within two years of being given many harsh medications he became violently ill and incontinent. Now it is seven years since this experience and I am care taking my son. For six years my son was ill he was in and out of hospitals, on many different medications and he became sicker and sicker.
Once a straight A student and personable young man, my son is struggling to get well. He has severe memory loss, difficulty speaking and concentrating and I must be with him at all times due to his inability to focus and be attentive.
I knew in my heart something was not right and continued to search for an answer. Then I found the Amen Clinic where they diagnose difficult medical issues using sophisticated brain scans. We did go there and my son was properly diagnosed using their brain scans with severe brain inflammation. Upon learning this we immediately began working with an Expert in Traumatic Brain Injury. Now a year since this time my son has made major strides forward in his recovery.
I AM MY SON'S CARE GIVER AND I AM MY SON'S MOTHER. Sometimes I say to myself "aren't these words interchangeable?" The difference however for me is that since my son fell ill and needed very special and intense care I have dedicated all of my life for him. Caregiving for my son has taught me that it is a giving of one's heart. It expands your ability to love, be compassionate and makes you a better person. Caregiving is the power of love that moves mountains.
I never gave up on my son. For the years he was on all kinds of medications, in and out of hospitals - it was almost too much to bear. I knew however that I must dedicate myself to getting my son well.
I have learned that caregivers are special people. True caregiving is an act of love, an art form, a calling. I have utmost respect for caregivers. We as caregivers are rewarded by growing every day as compassionate, loving beings who do great service to the world and our work as caregivers teaches us about what is important in the world - Love
“If a family has an old person in it, it possesses a jewel.” -Chinese proverb
My name is Cyndi and I currently care for my 92 year old father in my home. In May of 2010, my mother passed away suddenly after a very brief illness. She was 85 years old and my parents had been married for nearly 63 years. They raised 8 children and were really quite the best parents anyone could ask for, loving, supportive, and encouraging. They were very compatible couple so, when our mom passed away suddenly, we were all in disbelief, but no one more so than our dad. We didn’t think he would be able to manage being on his own. But with all our help, he did a great job of living alone. He lived alone from the ages of 87 to 91 and he was still driving, volunteering at church, shopping, and living independently. He eventually had to give up his volunteering at church. Though he was still driving, he found himself lost on a few occasions in a city where he had lived in for 40 plus years. We all knew that the time was approaching that he would no longer be able to live by himself. Then the unthinkable occurred, as many seniors are targeted in scam situations, our father was scammed by a phone call and although he ended up realizing he was being scammed, he progressed pretty far in the scam and had let his barrier down and we all believed he was too vulnerable to live alone.
We told him it was time for him to come and live with us. He came willingly because we all believed his confidence had been shaken. Having my dad move in with us was really a relief. With him living alone, we were constantly worried about how he was getting along. He appeared to be doing well when we were with him, but we never really knew if that was an act or if he really was okay. We knew he was lonely. Our fears were confirmed when he moved in with us, our father was not doing as well as he let on while living alone. His memory was definitely slipping and he was very frail. My father has now been with us for over a year. I believed it was a blessing when he moved in, and my four sons really loved having him around. We know he has enjoyed the action that accompanies a busy family. I care for him, make sure he eats, showers, gets his exercise, takes his medicines. I take him to the doctor as needed. Through all of this, he is a joy to be around. He never complains and has a wonderful sense of humor. He has severe dementia and takes medication to hopefully slow the progression of the disease though; we understand he will never regain what he has already lost. We are all so patient with him, I am especially proud of my sons, who amaze me on a daily basis. They have never gotten upset with him; they are respectful and kind and have shown great compassion and love toward their grandfather which is a very beautiful sight to behold.
So, you ask, what are the rewards of being a caregiver? Too many to list, however, I will attempt it here. My father was a great dad, so I am rewarded in knowing that I am in some way paying him back for all that he provided for our family. I am rewarded in that I am getting to really know my dad. He is so kind, generous and giving and has a wonderful sense of humor. I am rewarded in that I am learning a little family history. Although his short term memory is gone, there are still memories in the recesses of his mind that come out all the time. These memories surface and we would miss out on hearing them if we weren’t with him on a regular basis. I am rewarded in knowing that I married a good man, one who without question, allowed me to bring my father into our home, and who has shown so much love, compassion and respect for my father that I love him more and more each day because of it. I am rewarded in seeing my sons interact with my father. They are kind, respectful and loving toward him. I am rewarded in that I believe I am setting a good example to my sons and they are seeing how rewarding it is to care for a loved one. I am rewarded in that I see and talk to my siblings on a regular basis. When they reach out to see or talk to our father, I too get to see and talk to them. Overall, it is a very rewarding experience to care for my father. I will care for him as long as I am able, and in the meantime, I am enjoying the time I have had with him and the time I will have with him in the future. In closing, I would say, as my quote at the beginning of my essay so aptly said, my family is indeed in possession of a great jewel.
We strive to give all that we can for those we love. More important, the love we share is our motivation to bring the best quality of life to our loved ones. My son is a special child with special needs who came into our life as a blessing at five years old. Twelve years old now he has given us so much love to my wife and I. We wear unseen rewards of joy from his affection. The loving gaze of a foster child and hearing the words from their lips," I love you Dad." The feeling that warms my heart is priceless- a feeling that no value can replace.
My wife Nina was an active and physically strong woman- a woman of spirit and laughter. Much has left her since our earlier years. Illness has taken hold of her. Kidney failure and diabetes has taken much from her, but not her love, our love for each other is lasting; love that has endured throughout all our crises of sickness. That is our strength and bond. There is nothing of her too great for her to ask of me. It is my reward for the loving care that I can give my wife. She is my hope, my mission, my life's companion. Hearing these words mean so much to me, "thank you for taking care of me Steve." Would that give you something to live for everyday? Where would I be I think, without these two to care for, my wife and my son? I am a fortunate man to be given this gift of love from the both of them. Such a gift as this is immeasurable. One reward is that for the first time, I have written these thoughts on paper. These feelings warmed my being like a blessed spiritual flame. My love allows me to continue to care for my lovely wife and precious son. Those gifts and blessings have inspired so much loving care for the both of them. Truly the closeness I share with them is overwhelming for me. I worry if I am doing enough? Is the food prepared correctly? Does the laundry look clean enough? Did I prepare for the Doctor's appointments? Are the refills ready? How are they feeling today? You see it is 24/7 and it does not make sense unless you love what you do. There is no remuneration for this, only the reward of giving completely of yourself for those you love.
There are plenty of people walking around hating themselves because they never knew how to completely give of themselves for those they love. We have but a short time with those we care and love.
Every moment is precious, every feeling, every heartbeat, every breath, every utterance, every embrace, every touch, every kiss. Their fulfillment is our life's passion. Let us give enduring care, for that is what completes our lives and those we love. Thank you for letting me share, the rewards in my life are many.
When I first met Courtney, she was newly admitted to my unit after suffering a devastating accident, leaving her unable to clearly communicate, move the left side of her body, or control her bowel and bladder function. The pictures that hung on the wall of her hospital room told of a young girl with a bright smile who was once involved in cheerleading and track, spent her days at the beach with friends, and loved anything pink. The girl in the hospital bed, however, was a far cry from the images I saw on the walls. As I cared for Courtney throughout my shift, cleaning her and helping her dress, I saw the frustration and anger in her eyes. As she sat at the edge of the bed, my hands on her shoulders for stability, I watched as tears began to well up in her eyes, her torment obvious as she was unable to communicate her feelings. As I crouched down, hugging her as tears fell uncontrollably from her eyes, I told her, “Your life is not over. You are here for a reason. Your life is going to be different now, but it is not over.” Again and again as she sobbed, I reminded her of this truth. Eventually, her tears subsided and we continued with our task.
Over the course of the next weeks, I was often Courtney’s nurse, and would always pop my head in to see her, even if she wasn’t my patient for the day. As the weeks progressed, Courtney began to exhibit faint return in movement to the left side of her body, regained control her bowel and bladder, and even began to say a few words, such as “yes,” “no,” and “okay.” As I cared for her, I would still see the heartbreak in her eyes as she struggled to perform tasks she once completed without a passing thought.
Over and over I would encourage her to keep fighting, reminding her, “You are here for a reason. Your life is different now, but it is not over.” With each of these discussions, Courtney would grab my hand and with tears in her eyes, give my hand a squeeze. This continued for the first few weeks of Courtney’s stay, until one day, as I was walking down the hall, I watched Courtney walk towards me with the help of a walker and therapists. Tears welled up in my eyes as I watched this beautiful young girl take step after step towards her recovery. Days turned into weeks and over time, Courtney’s progress improved exponentially, until one day, I saw her name on the list of patients discharging for the day. My voice caught in my throat as I walked into her room to review her discharge instructions. Standing in the center of the room, hair and makeup done, with a bright, lively smile, was Courtney. She had come so far from the girl I saw in the hospital bed that first day. As I walked her and her parents to the car, Courtney hugged me goodbye and in the sweetest voice said, “Thank you, it’s different, but not over.” These are the moments I hold onto as a healthcare professional.
I see so many patients who are dealing with the unthinkable: tragedies they never thought would happen to them. It is impossibly difficult to watch their struggle, frustration, and anger; but when I see a patient catch a glimpse of their progress and their potential, when I get to be a part of helping a patient return home to their family, unrecognizable from the person they were when they admitted, and when I watch the smile on a patient’s face as they say their first intelligible words, those are the moments that remind me the hard moments and heartache are so worth it. My patients are here for a reason, and so am I.
Please note: Names and details changed to protect patient confidentiality
I had to think about all the rewards I have received from my clients while caring for them and try to put it into words so that others would understand how grateful I am for the life’s lessons that they have taught me. I’ve learned history from those who were actually there. I had a client that was in the Battle of the Bulge and he described in detail the cold, the injured, and the prisoners that were relieved, to just be captured. I had a client that developed the land for places like Pacific Palisades, Porter Ranch, and The Northridge Mall to name a few. I’ve heard stories of how much was paid for a bucket of cotton and how much land their family’s had owned and lost. I’ve listened to the stories of how they invented things like the home pregnancy test and made custom planes including one for the Shah of Iran. Of course I Googled the things I heard not only to verify that it really happened but to be more knowledgeable in our conversation the next time I went to see them. That few minutes it took me to learn more about them meant everything because it showed I cared.
I consider myself a really good cook but the tips and tricks and recipes that I have learned from my clients should be written in a special book. I’ve been given recipes that are over 100 years old and cut from old magazines and newspapers. I now know how to cook salt free, sugar free, and gluten free and forget organic, at this age they tell me it doesn’t matter. I learned quiche was perfect for the Bridge party and wrapped cocktail wieners for everything else. I was taught how to make an omelet in the microwave and fry a filet mignon both are very good by the way.
I am an expert at using the automatic card shuffler and playing Hand and Foot. I know Skip-Bo and Uno like never before. I cheat at Crosswords using my phone while my opponents are using the crossword dictionary. My use of letters and words are spectacular from hours of Scrabble. I know not to speak while the Bingo numbers are being called and to not learn how to play Bridge because those ladies are too serious for me. I know not to try so hard at Yahtzee and what Lawn Bowling and Horseshoes are. I have become quite worldly from all the games I’ve been taught and had 1 client tell me that she didn’t want me to cook and clean because I was her occupational therapy.
I have learned to always ask before assuming my way is the right way. Everyone likes things done differently. Learning the ways of people that are older and wiser has also taught me a lot. I can make a perfect bed, sweep and mop the floor in record time. I know what the best and most affordable cleaning products are and those that are unnecessary.
I have learned that everyone deserves dignity. My clients tell me that they don’t get embarrassed anymore since every doctor, nurse, caregiver and so on has seen them naked. I still give them that time that they need to care for themselves as much as they can. I let them know I’m a few feet away and can be at their side within a second. When they have an accident, it’s no big deal, done it myself. I’ll have you cleaned up in no time. I’ve learned how much they appreciate that as they tell me they wish everyone respected their privacy like I do.
I have learned about family values and traditions that were carried down through generations. I have heard how children, grandchildren and great grandchildren have been raised and lost. I have heard of love at first sight and seen pictures of 70th anniversaries. I have also heard the grief of losing your life long best friend. I have experienced the difference in cultures and religions and the acceptance of life as it is now verses how it “used to be.” I have learned to be that confident when someone felt that no one else would listen.
I have learned that everyone should be loved unconditionally and with compassion and let me say, there are some grumpy difficult people I have worked with. I call them another lesson to learn. I make it my challenge, my reward, to make them laugh and like me, before I leave my shift that day.
So I hope that I’ve described all the reasons I love my job and what makes it rewarding for me to be a caregiver.
18 years. He's been alive and in my life for almost 18 years, this boy who wasn't expected to survive. When I read the foster care referral, I skipped right over the part where it said, "possible death", but I have been battling Death for what seems like every minute of these 18 years.
I can recall the first time I saw his sweet being like it was yesterday. He was so tiny and perfect, lying in his bassinet in the NICU. He didn't look sick, he looked angelic. At that point he was just supposed to be my foster child, but my soul knew better. I was meeting my destiny-- my most important teacher, my inspiration, my reason to crawl out of bed each morning (and often in the middle of the night, even after 18 years) -my son.
Jack has survived so much: 6-hour long seizures, pneumonias, 14 surgeries, countless doctor appointments where he’s poked and prodded, teachers who are incapable of seeing past his disability and rule out his intellect. He's endured all of this and more, and still manages to greet each day with a smile... well, often he greets the day with the typical teenaged grumble, but he always manages to find something to smile about by the time he leaves for school. Those mornings when he catches my eye and gives me his sideways grin as he heads into class can buoy me throughout the entire day.
Most of the time, Jack is a very healthy guy. It's just that when stuff hits him, it hits him hard. Most folk take for granted the ability to move; our whole physical "system" is built on a foundation of movement-- and Jack's body doesn't move the way most do. This complicates things in ways that can be a sneaky surprise. You see, I know all too well that healthy one day can mean gone the next. Jack has lost more than one friend who had challenges like his. Hearing the news devastates me every time. I know that many folk with cerebral palsy live into late adulthood quite happily, but not all of them do. Even in sleep my brain is on high alert; listening for the sounds of Jack in distress. Distress comes more seldom now; there are nights that I sleep soundly until 5:15 am and then bite back panic that maybe I missed something, forcing my breath to be calm and slow as I make my way to his room with his morning meds, telling myself that he’s fine, but pausing to make sure he’s breathing when I get there. This is heavy, for sure. It also forces me to appreciate every single moment— even the rough ones.
Jack is my guru. He’s not an angel; he’s a strong-willed, stubborn teen who can drive me crazy and laugh in my face while he does it. It’s a given that if I choose to lock horns with him, I will lose. There are times I lose my sense of humor, but Jack’s always there to remind me that the gentle way is the most powerful one. I can see his laughter as disrespect, or I can see it as an invitation to stop, breathe, and remember that what’s important is connection; presence; listening with the heart. And every time I do that, what flows between us is so— freeing; so crystalline in its goodness and comfort. My boy’s smile is a gift that nothing can match, when I slow down enough to let it in.
Every moment fighting the good fight, showing up, working to provide him with the opportunity to express himself or to feel joy feeds my soul while I attempt to provide for his. He amazes and inspires me daily. Watching him grow and develop a sense of purpose thrills my soul. Who knows who I might have been if Jack hadn’t entered my life? I was never a bad person, but I wouldn’t have known the depth of my ability to love, and I doubt I’d have appreciated the simplicity of love and joy that is all around us. This almost 18-year marathon of love and struggle has made my life rich beyond compare, and I am grateful for each breath that moves through my boy.
Every moment with him is a gift, and I am humbled to receive it.
Today seems like it’s going to be a bad day. Adan woke up feeling really upset and he won’t allow me to get close to him to change him. He begins to kick me in order for me to stay away. I try to get close to him again and he grabs my arm and he digs in his nails into my skin. It hurts badly. We are running late and I begin to feel frustrated and overwhelmed. I remind myself that I need to remain calm and patient. I tell him cheerfully, “C’mon my love, you got to get ready to go to your day program!” He gives me a big warm smile and let goes of my arm. I don’t remember much of the day my baby brother was born. When I look back, all I remember is Adan being in an incubator and visiting him every day. I had no clue that Adan had been born with developmental disabilities and for many years I didn’t seem to notice. Adan was diagnosed with severe intellectual disability, cerebral palsy and severe autism. I took care of him like a big sister should and I loved being around him all the time. Then one day, my parents sat me down and explained to me that if one day they were leave this earth, I would be responsible for him. It was a responsibility that I didn’t want. I was terrified. How was I ever going to be ready for something so life changing? This meant that I would have to give up my entire life to take care of my brother. I slowly began to distance myself from him until ultimately I wasn’t around anymore.
Five years ago, we lost our mom to stomach cancer. It was such a difficult time for the entire family. I was struggling with major depression and trying to finish college and Adan had just aged out of the school system which meant he would be attending an adult day program. It was so overwhelming, physically and emotionally draining but most of all it was so lonely. I can’t imagine what Adan must have been feeling. We both struggled with change and it was such a challenge to adjust. Adan didn’t like the idea of attending a new program. He kept to himself and refused to eat. He also didn’t like the idea of me being his caregiver. He didn’t trust his big sister anymore. He would kick me and pull my hair especially when I had to change his diaper.
I still remember sitting in the bathroom floor crying because Adan would refuse to have his diaper changed. So many times I wanted to quit. So many times I just wanted to walk out that door and never come back. I knew deep down inside I couldn’t. I had promise my mom that I would always take care of my baby brother.
I’m so grateful that I stayed. Adan has taught me so much about myself and because I care for Adan, it has been the most rewarding experience of my life. Many people have told me that I’m not living my life because I care for Adan, but that’s far from the truth. I no longer feel that I’m “giving up my life” or “throwing my life away.” Being Adan’s caregiver is life in itself. I can’t picture my life without being there for my baby brother. He has given me this sense of accomplishment. I believe it takes a lot patience, understanding, and empathy to care for someone. It’s not something I’ve mastered but I continue to grow and learn and that makes me feel so proud of myself. I also feel like I’ve gotten a second chance. I missed out on so many special moments with my baby brother the day that I decided to distance myself and I’m just so grateful that I’ve gotten the opportunity to just be there for him. The special moments we share are just so precious to me. Adan is non-verbal, therefore it’s difficult to communicate with him but I know that when he gives me a big warm smile or he comes up to me to hug me, I feel genuinely happy and appreciated because I know he appreciates everything that I do for him. Adan has inspired me and has taught me to appreciate life regardless of its tribulations. He’s taught me the importance of self-care. I’ve learned to put myself first and care for all my needs because when I don’t, I’m simply not being the best version of myself. I’ve managed to control my depression and simply be a much happier person.
Today, I have much healthier relationships because Adan taught me that we must learn to communicate and be patient with others. I’m involved in volunteer service because he has taught me the importance of helping others. I’m the happiest when I help those in need. I’ve traveled to different countries because he has taught me I deserve to have some fun and see the world. I even work at Adan’s day program which I absolutely love. Adan has rewarded me with so much and all I want for my baby brother is to have the best quality of life he deserves. It’s my way of saying thank you.
Providing care for an aging and sick parent is a natural part of life. However, no one ever expects this chapter in life to occur at the age of 24. I was only seventeen when my mother began showing signs of dementia. Sequences of repetitive questions in short intervals became a common thing. She began misplacing her belongings and her behavior was changing. A once active, spirited and hard working woman had become aloof to the world around her. The slight annoyance of repeating the same things was replaced by a viable sense of worry and uncertainty.
As the months passed, confusion took over. Her attention span was short and her energy was diminishing. I remember sitting beside her on the dining room table one summer evening after she had been officially diagnosed with Frontal Temporal Dementia. She was practicing writing her signature. Her penmanship was starting to resemble a child’s handwriting. Her hand twitched as she tried to hold the pen against the notebook. She then stopped and admired the pen for several minutes until she realized she was supposed to be doing something; but could not remember what. She looked at me with a bland expression, no longer aware of what she was doing.
My heart was breaking as I observed her actions, realizing that the brilliant woman I admired was fading away. I could feel a tension on my shoulders as the goose bumps cultivated in my arms. Overwhelmed by an unfamiliar emotion, I could only think of doing one thing to break the tension. I made my signature “silly face;” the one that always made her laugh when I was a child. She giggled and held a lingering toothy smile with her eyes closed. Her face lit up like an innocent child.
This single gesture would end up being one that I would go back to for years to come. In the midst of my mother's descending health, her grin never failed to alleviate my sadness. Even as her condition worsened and her communication skills fell apart, her smile was always an indication that she was okay, which made everything that I did for her worth it.
In the following years, her words became sounds with puzzled meanings. My mother was no longer looking after her children. She was no longer cooking her delicious meals, not planning holidays get-togethers, and not able to care for herself. The family dynamic shifted and I began cooking her meals, combing her hair, washing her clothes, and rubbing her stiff and sore muscles. It is not easy caring for a parent when you feel like you are still growing up and have a lot to learn about the world. However, caring after my mother proved to be the best education for me. In the midst of her descending health, I spent a lot of time learning to balance my duties at home and focused on obtaining an education. While many people thought I was doing the impossible, I simply explained that I did what my mother would have done if she were in my position.
The foundation of my actions is the values and work ethic that my mother promoted when I was growing up. Even as her health diminishes, I found that her presence served as a motivating force for me to stay strong and never give up. My mother was a generous and hard working woman and my actions are my way of honoring her. I will be happy if I could be half as caring and selfless as my mother was. She is my inspiration and my drive. I am rewarded with joy that I can help her and challenge myself in all aspects in life. These challenges have not been easy, but the lessons, the wisdom and outcomes are priceless and have made me a better person.
Although I seldom see her smile now, I have learned to appreciate the rare times that she smiles; sometimes without me even trying. These subtle moments cultivate rare instances that I once looked for comfort. However, the rarity of her smile now holds a bigger significance than before. I know she smiles knowing that I have not given up on her and I have not given up on myself. There is nothing more rewarding than that.
There is a story; a story of a very large family with six children and two parents. Two of the children have extras. One is an extremely independent, amazingly courageous warrior of a boy who is a huge athlete and never backs down from a challenge. The other is a sweet, adorable little princess that is completely dependent on her family. Our son, Kumaka is 8. He was born with Spina Bifida, hydrocephalus, bilateral club feet and is crazy independent but he didn't start out that way. He has had multiple surgeries, multiple illnesses, and was in and out of the hospital for four years. He had a really scary surgery at four, a bilateral hip surgery. It lasted 12 hours and he needed a blood transfusion. He woke up with a spica cast from his waist to his toes and was in it for 2 1/2 months. During that time, our community came together to play with him, read to him, and bring us food. And during that very difficult time we realized that there are other children out there in the world that are alone and don't have the support and care that our son has and that we could provide that care to another child.
While our son was still healing from this surgery, we started the adoption process for our daughter, Sofi. She has been with us for almost two years now. Sofi is extremely dependent for everything. She has a g-tube, and is completely fed and given liquids that way. She is in a wheelchair and is not crawling, walking or talking. She is six years old, but has the brain size of a 6 month old. She has CP and global delays, but her smile lights up our world. She knows when her brothers come in the room, and she laughs and lifts up her arms. She loves surfing and the beach. She is extremely happy at school. And she loves batting at toys. Prior to coming home, she lived in Bulgaria and was in a crib for three years of her life. She was never held, never given a toy or mobile or anything to fire up her mind.
As we watch our son grown, learn, and charge through life with complete abandon, he is learning to care for himself. We care for our daughter Sofi completely. She is our angel, she is our miracle. Our family has changed since she has been in our home. Caring for this little girl that can't do anything is such a sweet service. As we have imagined her life prior to coming to our family, our hearts hurt. As we continue to grow with her, we are so blessed by her smile, by her sweet spirit, and by her love. As one of the children we care for becomes more independent and we rejoice in that, we celebrate having our sweet Sofi and the miracle she is.
Story 11: Stephanie C., Caregiver for her son
For 26 years I have been a caregiver. I have learned that caregiving is an ever evolving life lesson. Is caregiving a rewarding experience? Absolutely. For others to understand the rewards of caregiving, you would actually have to travel the journey with us. The worries, struggles and heartbreaking moments would seem to overshadow the joys of simple accomplishments or the heartfelt hugs, kisses and laughter that come with caregiving. Let me tell you, they do not.
I never planned on being a lifelong caregiver, I don’t think anyone does. But in 1991, our son Jared, was diagnosed with a rare genetic disorder called Angelman Syndrome. That is when our journey in the world of special needs began, and that is when I realized that Jared would need lifelong care. For many years I was a stay at home mom in order to meet our son’s needs, only going back to part time work when Jared was medically stable. My husband took on extra work to support us. My caregiving involves being a mother, a nurse, a doctor, a therapist, a teacher, and an advocate. Really, any mother does all of these things. But being a mother of a child with special needs means all of that is so much more intensified and sometimes you have to be all of these at one time. To meet Jared’s medical needs, I sometimes called other Angelman parents in other states to gather information that might be helpful. The reward was their support and knowing we were not alone.
Caring for everything from Jared’s seizures, to his breathing, to his metabolism, to his irregular sleep patterns, to all of his daily care can still be physically, mentally and emotionally exhausting. I had to learn to build and navigate a team of outsiders who came into our lives because of Jared’s needs, often teaching our team of doctors, therapists, case managers, respite providers and teachers about Jared’s care and diagnosis. Building trusting relationships with outsiders is not easy, but it is crucial. I once sat down to write down the names of those who had touched our lives because of our son. I filled up a page of paper and knew there were so many more that I could not remember. It is so rewarding to have a team of people who treat Jared with dignity who see him as the beautiful person he is and not a diagnosis.
Over time, I learned that caregiving also means caring for yourself. Taking a break sometimes means that I can be a better caregiver. Understanding that has been a long time in coming, but so rewarding!
I learned this from mothers who are further down their journey and to this day I still seek out their guidance, just as other mothers now seek out mine. In my work I serve parents in an early intervention program helping other mothers as they become caregivers; preparing them for the work, heartache, and abundant blessings that they will encounter on their journeys. When a mother tells me that she knows she can do it because I have done it…there are no words to describe how rewarding that is.
Very simply, the blessings come with the feeling of accomplishment no matter how small, a heartfelt kiss from my son; hearing his laughter and the absolute joy he brings to our family. Even covering him up in the middle of the night or kissing his hands as he sleeps is rewarding beyond measure. Caregiving always keeps your feet on the ground, understanding what is important and what is not. Our family possesses a strength that others know nothing about, and the compassion instilled in my other sons is unparalleled. My younger son once told me, “Jared has taught me more than anyone else and he has done it all without saying a word.” And yes, having Jared healthy and happy and is the greatest reward.
Any caregiver can express what it involves, what to expect, and how to keep yourself going. But the rewards? Those are for those who embrace caregiving with all of its challenges and all of its blessings.
For 26 years I have been a caregiver. I have learned that caregiving is an ever evolving life lesson. Is caregiving a rewarding experience? Absolutely. For others to understand the rewards of caregiving, you would actually have to travel the journey with us. The worries, struggles and heartbreaking moments would seem to overshadow the joys of simple accomplishments or the heartfelt hugs, kisses and laughter that come with caregiving. Let me tell you, they do not.
I never planned on being a lifelong caregiver, I don’t think anyone does. But in 1991, our son Jared, was diagnosed with a rare genetic disorder called Angelman Syndrome. That is when our journey in the world of special needs began, and that is when I realized that Jared would need lifelong care. For many years I was a stay at home mom in order to meet our son’s needs, only going back to part time work when Jared was medically stable. My husband took on extra work to support us. My caregiving involves being a mother, a nurse, a doctor, a therapist, a teacher, and an advocate. Really, any mother does all of these things. But being a mother of a child with special needs means all of that is so much more intensified and sometimes you have to be all of these at one time. To meet Jared’s medical needs, I sometimes called other Angelman parents in other states to gather information that might be helpful. The reward was their support and knowing we were not alone.
Caring for everything from Jared’s seizures, to his breathing, to his metabolism, to his irregular sleep patterns, to all of his daily care can still be physically, mentally and emotionally exhausting. I had to learn to build and navigate a team of outsiders who came into our lives because of Jared’s needs, often teaching our team of doctors, therapists, case managers, respite providers and teachers about Jared’s care and diagnosis. Building trusting relationships with outsiders is not easy, but it is crucial. I once sat down to write down the names of those who had touched our lives because of our son. I filled up a page of paper and knew there were so many more that I could not remember. It is so rewarding to have a team of people who treat Jared with dignity who see him as the beautiful person he is and not a diagnosis.
Over time, I learned that caregiving also means caring for yourself. Taking a break sometimes means that I can be a better caregiver. Understanding that has been a long time in coming, but so rewarding!
I learned this from mothers who are further down their journey and to this day I still seek out their guidance, just as other mothers now seek out mine. In my work I serve parents in an early intervention program helping other mothers as they become caregivers; preparing them for the work, heartache, and abundant blessings that they will encounter on their journeys. When a mother tells me that she knows she can do it because I have done it…there are no words to describe how rewarding that is.
Very simply, the blessings come with the feeling of accomplishment no matter how small, a heartfelt kiss from my son; hearing his laughter and the absolute joy he brings to our family. Even covering him up in the middle of the night or kissing his hands as he sleeps is rewarding beyond measure. Caregiving always keeps your feet on the ground, understanding what is important and what is not. Our family possesses a strength that others know nothing about, and the compassion instilled in my other sons is unparalleled. My younger son once told me, “Jared has taught me more than anyone else and he has done it all without saying a word.” And yes, having Jared healthy and happy and is the greatest reward.
Any caregiver can express what it involves, what to expect, and how to keep yourself going. But the rewards? Those are for those who embrace caregiving with all of its challenges and all of its blessings.
Through His Eyes
Caregiving comes naturally to many, especially mothers. Providing care for someone with unique needs requires digging down deep inside; tapping that well of unconditional love and eternal patience. Very few can do that, especially hour after hour. With my son as guide and instructor, my experience as his care giver has, and continues to be remarkable and wonderful. Each moment unfolds in amazing ways through his senses as I observe him and learn about life and the world around us. An afternoon outside for instance...
Small, blue-green eyes stare intensely into the settling cloud of dust. A flurry of little hands causes another whorl of dirt; and again that intense stare of wonder. This goes on forever, in slow motion, time is standing still, all most. I watch in amazed delight at my son’s own wondrous glee as he makes the most of such a simple thing. I revel, and can only guess at the possibilities of what he is thinking.
He has shown me beauty, grace. It is almost art the way Gage conducts the clouds of dirt. You or I might go scuffling through the dirt with no notice, Gage’s world is different. I thank him every day for letting me be part of it. I may be his mother, his care giver, but he is my teacher.
Through his eyes I see every nuance. Again, the cloud rises and shifts, sun reflects off of bits of mica as they seem to dance back to earth. He is delighted by the light show effect and raises another cloud; and look, the dust billow has a shadow, but, only fleetingly. He pauses for a moment to pinch finger-fulls of dirt up and let them trickle down onto the back of each hand. Then he furiously burrows his fingers in to the dirt, examining each to make sure it is covered. Next, with a fingertip, he is tracing the little cracks in the ground leading away from each burrow mound, making a nose print at the end of each track. Another pause, I realize he is listening to the birds above argue over the branch they all want to be on.
Each day with Gage is a priceless gift; a journey of discovery for him and rediscovery for me. There are so many simple pleasures to enjoy and Gage makes each one a unique experience. I might not have ever found them without Gage’s effortless teaching. Life on his terms is truly awe inspiring. Being able to share his world and care for him as he teaches me to live, fills me with a sense of gratitude and love beyond measure. I can watch him explore the world for an eternity. It fills my heart with such happiness, with peace that I can think of no greater reward than to have each moment with Gage.
Caregiving is the highest privilege I've been honored to carry in my 39 years. Be it for my own disabled daughter, or for my schizophrenic gentleman, or any number of my quadriplegics- yes, I consider each of them "mine."
An intimate relationship, unlike the conventional definition of such a label, develops as day in and day out. I get to know each person in his or her most vulnerable state- the state of needing. Most of us reach a point in life where we want to admit needing anyone else never. In fact, it's practically offensive to even consider that we could do anything less than choose to have someone help us, let alone lose that choice altogether.
Usually, caregiving comes into an individual's life out of circumstances far out of his or her control. Many of them are reeling as they recover and relearn living. There is no greater reward than to walk beside that of a hurting individual and know that you can help them.
I love learning what each of my patients prefers- their favorites, their sources of happiness, their memories, their families, etc. And the more I can take a few extra minutes to make their lives better, the more I try to do just that. My schizophrenic loves breakfasts and I love making them. So every morning I whip up hearty omelets or pancakes, or salmon with brie and eggs. The first time I ever brought him smoked salmon from my dear friend and created that plate of brie and eggs with it, he looked up with his haunted brown eyes and said, "I feel like a people!"
Every day is not chock-full of rewards. On the contrary, most days are monotonous and most days blend one into the other. But, much like every other aspect in life, the rewards come when they are most needed. And they bring with them fresh inspiration for the time ahead.
To be allowed to walk alongside my patients and show them the care they deserve is a privilege I pray I remain able-bodied the rest of my life so that I can provide it to any individual brought across my path.
I became a Caregiver at a very young age. I was 13 at the time and my Grandfather, who was more of a Father to me than anything became ill. I didn't really understand what was happening at that time too clearly. All I noticed were the changes in his activity level, he took more medication, he was sleeping longer and more often, needed help with simple things that he used to do on his own. My Grandfather who was an avid cook, mechanic, and wood worker suddenly seemed to need help with cooking, cleaning, laundry. We stopped working on the old 1967 Cadillac that we loved working on together. We stopped working on carvings in the garage. Instead we were spending more time in the house where I would help clean up and prep his prized German and Polish recipes with his supervision as to the ingredients and cooking temps. I know that I was never able to shine a candle to his ability to make Pierogies, but he was kindhearted and claimed they were just like his. My Grandfather had instilled a sense of pride in our family, he taught us that as a Family we stick together and help each other and no one gets left behind.
When I was 16 years old, my Grandpa had gone to the hospital and needed emergency surgery for a tumor that was metastasizing in his brain and had already caused several minor strokes. During the operation, there were complications due to hemorrhaging. My Grandpa passed away at the age of 68. I was devastated that I had lost my mentor and father figure, I missed spending time with him, talking with him, reading to him, cooking with him. I missed caring for him. I left home shortly after his death due to a falling out with my mother and stepfather and it was then more than ever I felt the void that his loss had created. For the first time in my life, I felt truly alone. When I was 21, I had come to Chicago in search of work and a fresh start, but my own health was failing. I had been diagnosed with cancer on top of several pre-existing issues I had already had from childhood. My illnesses left me limited to what I could do for a living and my limitations eventually led to me being homeless and very ill. I would go to a drop in program twice per week for assistance, where I met (though I had no way of knowing at the time) my future wife Karen who was the caregiver for her grandmother Esther. I became good friends with her and her Grandma, and we would talk each time I was at the drop in. Her relationship with her Grandmother reminded me of the one I used to share with my Grandpa. Their companionship meant a great deal to me and made me feel like I wasn't completely alone anymore.
Unfortunately I had to leave Chicago for a job opportunity, and I lost touch with them until I returned 3 years later. Upon my return, my health was even worse than when I had left and I was homeless and jobless again. I returned to the Drop In center where I was relieved to see Karen, but puzzled as to the absence of Esther. The two of them were inseparable and I had never seen one without the other. Karen told me then that Esther had passed away and that she was working part time and staying with another relative. In our conversation, I relayed how ill I was and told her how hopeless I felt. She had started to help me more and more, bringing me food and clothes and talking with me outside of Drop In hours. Soon friendship blossomed into something else, and we were married months later. Karen had gotten a job at a home care agency as an aide soon after, but my health had continued to decline. I was unable to work and she was the sole provider for both of us. Now I was the person on the receiving end of care. Karen took me to appointments, cooked, cleaned, shopped, picked up my meds, paid my medical bills, went with me to the hospital when I was at my worst. I never imagined that I would need the kind of help that I had once provided for my Grandpa, but I was grateful that I had my wife's support and I wasn't on my own. It took five years before I was in remission and back on my feet. Karen was still working at an Agency and she would tell me all the time about how rewarding her job was and how much she enjoyed working with her clients and helping them. A year into my remission, I applied to become a caregiver and was hired shortly after. My first day with a client, I finally felt like I had when I was caring for my grandpa; I felt a sense of accomplishment. I felt like I had found my place in the world again.
I can sum up what caregiving means to me in one word: love; the love of a grandson for his grandfather, the love of a granddaughter for her grandmother and the love of a wife to her husband.
I handed the puzzle piece to my father and said, “Woo hoo! The last piece- we did it!” He held the piece and rotated it to find the best fit. Watching him, I recalled my childhood when he and I completed a challenging 1,500 piece puzzle of a fisherman on the river surrounded by mountains and trees in muted colors. “Ooh hoo.” My father’s barely audible voice interrupted my memory.
This puzzle had 30 oversized pieces and after my father placed the bright yellow piece to complete the chicken, the barnyard animals puzzle was finished. He slowly stroked the puzzle admiring his work.
The challenge was as great as the childhood puzzle and completing it was as equal accomplishment, just as it was the day before and many days before that.
My 88-year-old father had Alzheimer’s and did not remember doing the same puzzle yet again. The activities he once enjoyed - fishing, cutting and stacking firewood, swimming in the lake, making a strudel by stretching dough so thin that one could see through it, or sitting around the kitchen table telling stories of his past were just a memory. At least, they were just a memory to me. For him, the memory was gone. So, we spent our days completing the same puzzle, holding hands, searching for meaning in every hint of lucidity and cheering on the small accomplishments because with Alzheimer’s, every accomplishment was worthy of celebration.
My father lived in the nursing home for five months after my mother’s passing. Too weak to stand on his own, he was wheelchair bound. His boredom and malaise almost guaranteed that I would find him sleeping in his chair, his head tilted, and the weight of his tongue too heavy to keep in his mouth. He rarely looked like the residents pictured in the nursing home brochures; the photos reserved for the
spry with lively expressions. Yet, when he saw me, he lit up. Often, he knew that I was his daughter. Other times, I was a friend or a favorite sister. I reminded him every day that he and I were a team.
Well-intended friends advised that I not visit every day. “He won’t know if you’re there. He won’t remember.” They were right. My father would not remember but I did. I remembered him showing me how to bait a fishing hook. I remembered him whistling while cooking a Sunday supper. I remembered him pushing aside the kitchen table to dance with my mother. I remembered him peeling an apple with his pocketknife and offering it to me one slice at a time.
I remembered him telling me as long as I hung my legs under his table; I had to follow his rules. I remembered that he taught me family mattered. Spending time with my father gave me the chance to tell him about memories we used to share, to let him know that I heard his lessons on the value of family, and to hold tight for as long as I could through a disease that never has a happy outcome. The caregiving was for me just as much as it was for him. “He doesn’t light up when he sees you; he reflects the light that you bring,” an onlooker commented.
It has been two months since my father has passed and the ‘light that I bring’ admittedly dimmed. However, when I think of him and the relationship we had, even through his disease, the light flickers and shines a little brighter once again.
In 2010, we got the exciting news that we were expecting! We already had a son that was three. We were thrilled to learn it was a girl at our 20th week ultrasound. Pink, pink, pink was all I could think! As the tech continued to scan, we can see her excitement slowly diminishing. What was wrong we asked?
We were then sent to meet with a doctor- a new doctor to explain our ultrasound. Having already having a child, I knew this was not normal. My heart broke. We were told that my baby was measuring very small. Her heart wasn't normal and she had signs of having a syndrome. A syndrome? This is something no one ever wants to hear. Our joy was quickly turned to sorrow.
We choose not to terminate, and she continued to grow 12 more weeks in my belly. On December 6th, 2010, she made her appearance into the world. A tiny little bundle of joy, big blue eyes! Her name is Kiara! She spent 4 months in ICU, where we got her diagnosis of Williams Syndrome at 3 weeks.
Williams Syndrome is a genetic syndrome present at birth that affects 1 in 10,000 births. Babies with WS have life threating cardio vascular problems, as well as low birth weight, feeding problems, developmental delays, kidney abnormalities and extremely sensitive hearing.
We were told at times she wasn't going to make it. She has made it through every surgery, every illness and continues to shine! Kiara is turning 5 on December 6th. She is the light of this family! She’s showed us how to love.
They don't tell you how amazing your life will become having a child with Williams Syndrome. Children with WS tend to be social, extremely friendly and endearing. Parents often say the joy and perspective a WS child brings into their life has been unimaginable.
Every morning we are greeted with a huge smile and "Hi mom, I love you." You will never meet another person like someone with Williams Syndrome. Kiara has such a true love for everyone. You are instantly her best friend!
In our family’s eyes, she is our heart and soul. She is no different than any of our other children.
We fight on the hard days, and celebrate on the good ones. We enjoy and appreciate the simplest things, like big huge smiles, learning a new word or just cuddling in bed.
We live for today, and hope for tomorrow.
What makes caregiving rewarding? It's a simple question, with a complex answer. I am currently a college student, with hopes of becoming a Registered Nurse and continuing on to become a Nurse Practitioner. In order to better prepare myself for the days where I am a nurse helping and taking care of patients, I became a Certified Nurse Aide about four years ago. Although the two professions differ in many ways, they also have many similarities, and one of the most important being is that you get to help others. I have been employed at a nursing home for four years as well, and every day that I work is an enriching learning experience. I work on the Dementia/Alzheimer’s unit and I would not have it any other way.
So, what makes caregiving rewarding for me? Well, for one thing, seeing a bright and genuine smile on a resident's face even when you help them with the simplest of tasks is beyond rewarding. The fact that I, an ordinary person, just doing my job can make someone else's day extraordinary is a heartwarming feeling. To be completely honest, it is not always the easiest to work on a floor that is occupied by residents with dementia, and there are days where situations have frustrated me, but I take a deep breath and I remind myself that, everybody has a story and that those residents did not CHOOSE to live their life this way, rather it CHOSE them. With that being said, another rewarding aspect of caregiving is actually listening to residents speak of their lives, and what they have been through. Some went to very prestigious schools and achieved goals of becoming medical doctors and lawyers. Watching their eyes light up with passion when they speak of their struggles and their accomplishments is a rewarding privilege.
For me personally, the most rewarding aspect of caregiving is that it gives me a better sense or appreciation of life and my family. What I mean by that is, every day we wake up and we eat our breakfast and go about our day. Not once does it cross our minds that the day may come where we no longer have the ability to feed ourselves or dress ourselves, or pick up the telephone to call our most cherished ones to remind them of the love we have for them. I, just like most others, used to take a lot of things for granted but working in a field where it's apparent that absolutely nothing should be unappreciated is life changing. It is so rewarding to help others who are unable, get to know them, and make their days better and lives easier. It is also an honor to be able to learn so much and gain nothing but wisdom from those same people.
You can blink and turn your head and your life changes forever. The unthinkable, impossible, unbelievable happens, and life as you know it comes to a screeching halt. A chaotic emergency, a month in the hospital, a prolonged recovery - and you go from being a regular mom to 4 active children ages 9-18, to being a full-time caregiver to your 15 year old daughter who has suffered a gunshot wound to her abdomen.
Relatively new to this role, I am grateful that I am a trained nurse, but have not worked in this field for 18 years. I was not a trauma nurse, but now I feel like one. And so having worked with more tubes than I want to count, resolving dozens of mini crises alone, at home, and adjusting to having someone completely dependent on me 24/7, I can begin to look past the tasks and tension and count the blessings and rewards of my new situation.
For our family, we believe there will be a return to normal, and though at this time the end isn’t in sight, we expect a full recovery and an independent teenager in the future. However, I know for many families and dedicated caregivers this is their life situation, this is their normal, and it is a difficult path that takes not only physical fortitude, but mental and emotional strength as well.
The rewards I have been given begin with the REALIZATION of what it means to be a caregiver in this capacity. I had no idea the many facets of this life. The toll it takes on the caregiver, other family members and relationships both inside and outside your family. This life is stressful, with unexpected turns and unplanned for emergencies. There are small victories and big setbacks and just when you feel you are moving forward, your positive attitude can be dashed by a day when, despite your best efforts and abilities, your loved one feels horrible and all you can do is watch and pray. This life can be lonely with very few people who really understand. Because, as I have learned, it is impossible for someone to understand until they have stood in your place. It was so for me, as I watched and supported from the outside looking in.
I have gained the reward of PERSPECTIVE. Living in this way helps you see what is really important in life and forces the little things into the background. This is a gift. I have LEARNED the painful lesson that we are all pretty selfish, me included. Going from mothering independent teenagers and an active 9 year old, and having a job you love, to having someone completely dependent on you 24/7, will eventually exposed what was sometimes camouflaged. These things we must face. And we probably need to make some changes along the way in order to care for our loved ones as we would want to be cared for.
I have the JOY of being given the opportunity to care for my beautiful daughter, to realize daily the miracle of her life with us and to be instrumental in nursing her back to health. What a privilege to be useful in healing, comforting, soothing… making life better for someone else.
Do I wish things were different? Yes. Do I wish this had never happened? Yes. Do I wish my daughter did not have to be in pain and miss activities she loves, from twirling flags to riding horse? Yes. Do I wish I was not in this role? NEVER.
I feel blessed. I am aware of the rewards. I now know – the journey is the PRIZE.
I am a care giver for my child, Mariano. He is only 16 months old and has a rare genetic syndrome that is called MECP2 Variance. Due to the type of genetic mutation he has, there is not much history of it to learn from or to help provide a better life. It is a one of a kind. Not only as a care giver but as a mother, I want to provide the best life possible for my son. I have been able to do so with the products we utilize from Shield HealthCare. The technological advances help my son to be able to feed and survive. He has a G-tube due to his condition. He is able to get the nutrition he needs to grow. He is not only thriving through the ability of feeding but also in the aspect of oral motor skills and physical therapy. He is not just present before me but he is living. Living a happy life that maybe someday he will look back on and see how much strength he had at such a young age.
I see my strength and thirst for life in my son. I too have my own medical conditions that prevent me from working a full time job. Being a disabled veteran, the idea to put my health first is not something I have been taught to do. I know to help others first. As soon as my son was stable I was able to get the help I needed. He taught me to be strong. He taught me that I need to be healthy too. Otherwise, who would take care of him to give him the best his life could offer? Although he may need daily assistance, I have learned so much through being his care giver. The greatest feeling is that we are both continuing our journey to live and not just be alive.
There is a huge difference from living and being alive. Being alive means you wake up, continue the routine of work, school or a routine of daily activities. Truly living is making memories, laughing, crying, hurting, overcoming all that life throws at you and smiling in the face of adversity. My son does that. He is an overcomer and HE LIVES. There are many people who take life for granted and many that may see my son or myself and think that’s not a life worth living. Well it is. Every life is worth living. It is how you choose to live it. To take a young infant like my son and see him fight and yearn for life is something of a miracle.
I am not going to lie; it is very difficult to see your child suffer. It is when he has overcome his adversities that make it all worth it, that make this life we live an amazing one.
He is a miracle and I was so blessed to have him in my life. My husband and I were chosen to be his parents, what more can we ask for! This is a beautiful life! He makes being a caregiver feel like being
a super hero, when he alone is my super hero. =)
The alarm goes off at 4:30 in the morning. I quietly don my scrubs and sneak through the house gathering all of my supplies for the day without waking my family. I head into the hospital for another shift in the children's emergency room. Caring for the hundreds of children we see throughout the day is exhausting. But my day doesn't end there. I'm a nurse. I'm a patient. And I am the mother and caregiver of a special needs child.
When I first entered the healthcare field, I was driven by the desire to genuinely help people. I attended nursing school and later went on to attain my license as a nurse practitioner. It was then that I found my home working with children in the ER as an NP. It was such a blessing to leave work every day feeling like you helped a child and their parent. I felt so fulfilled. And then I unexpectedly became a patient myself. I was still working in the ER when I was 23 weeks pregnant with twins. Everything was going so smoothly at my routine ultrasound. Then my doctor came in and I could tell the mood in the room had changed. “Where do you work?” she asked. I proudly said "In the children's ER downtown." “Not right now you don't,” she replied. She informed me that my cervix was extremely short and thinned, and that I was at a very high risk for preterm labor. My husband and I sat there in shock as we were told that I was being admitted to the hospital for bed rest for the duration of the pregnancy. I had suddenly become the patient.
It was a drastic change going to 'the other side of the bed.' I felt scared and helpless. I was terrified for our unborn twins that were still so tiny. There's only one word to describe all of the wonderful nurses who cared for me and my babies: Angels. For five weeks, all I could do was lay there in bed, knowing I was doing the right thing for my twins. It felt so strange to not be the one running back and forth down the hallway helping my patients. And then at 28 weeks, everything changed. I rapidly went into labor. The babies are coming today I was told. We agreed to proceed with a C-section because the babies were still too small to safely be delivered naturally. Then we met our two precious baby girls, born at just over two pounds each and 12 weeks early. They spent 9 long weeks in the NICU before coming home.
After they were home for a while, I couldn't help but notice that one twin seemed to be developing much slower than her sister. She did not seem to be doing well with her feeding and her movements just looked different to me. My gut was telling me something was wrong. Shortly after, Emmy was admitted to the hospital for severe reflux and had to undergo stomach surgery and have a feeding tube placed.
The surgery went well, but I couldn't help but continue to feel like she was falling behind on her milestones. Her sister could roll, sit, and do tummy time, while Emmy could not. We saw a developmental pediatrician and we were given the diagnosis: cerebral palsy. It felt like a knife to the gut. I had devoted my life to caring for children in the hospital and they often had chronic conditions. They are some of the sweetest and most loving patients I see. But I never thought I would face a multitude of chronic problems in my own child. I had just become a caregiver not only at work, but in my own home as well.
Now at almost 2 years old, Emmy is a beautiful, loving, bright little girl. She is still fed via feeding tube and now requires the use of a wheelchair and specialized equipment. She also suffers from seizures and heart arrhythmias. We have therapies several time a week and countless specialist appointments each month. She is still unable to roll, sit, or walk independently. It breaks my heart seeing the longing in her eyes as she watches her sister do these things with ease, but she is making progress every day. Emmy has a little spark in her eye that tells me that she's a fighter and she will succeed.
Although some days it feels like I never get a break from being a caregiver, I wouldn't change a thing for the world. Emmy has blessed my life in ways I could never have imagined. She is such a loving and genuine soul and she has taught me so much about myself. She works so hard at her therapies and it is so rewarding to see a big smile on her face when she does something new for the first time. So can proudly say, I love being a healthcare provider. But even more so, I love being a mother and caregiver. Never give up. Be persistent. Work hard and you can achieve anything you can dream of.