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Viewing 1 - 5 out of 5 Blogs.
As a little girl we played house and created a world with the perfect home, husband and child. Pretending to be a mom was a world with aprons, easy bake ovens, high heel shoes and pretty red lipstick. We knew this to be true, we saw it everywhere. It was on our televisions everyday. Donna Reed, Leave it to Beaver, Make room for Daddy even I love Lucy had moms with an idyllic charm that captured our imaginations.
As teenagers we rebelled. We were not going to be the idyllic housewife with pearls around our necks and children at our feet. We had new role models now. Mary Tyler Moore, Julia, That Girl and Charlies Angels transformed our beliefs. We dreamt of our careers and friendships and our lives as modern women.
As young ladies we became educated, got our first jobs, met the men of our dreams and felt the excitement and power of our first independence. We were empowered by the women on Cagney and Lacey, Knots Landing and Dynasty. The strength of these women changed our view of life and how we knew our life would be.
The men of our dreams became our husbands our partners our lovers. Maturity brought us to a balance of knowing that we could, if we chose, incorporate all the wonderful role models that had been set before us and have it all. We could wear that apron, advance in our careers, be strong formidable women, have that baby on our hip and do it all while wearing our best pair of stilettos. It was all laid out for us. It was the life we expected.
As woman and mothers we came to the stark realization that not unlike the fairy tales of our earliest memories, there are twists and turns and unexpected tribulations.
For some women life has given them pretty much what they expected. They seem to effortlessly walk through life and are truly content. For others, they are given the unexpected. They are given a child with a disability. They are given a heavy heart, not by the child, but by the illness or disorder that plagues them. These women feel limited in their choices, they feel they cannot have it all and feel a sense of loss for their happily ever after ending.
The woman of a child with a disability has been given the life unexpected.
Along with the unexpected can come the expected. If what we expected of ourselves as little girls, young ladies and women was to become nurturing, educated, independent, strong and supportive - then mothers of children with disabilities have not only met but far exceeded those expectations.
My father once told me "Expect nothing and you will never be disappointed". Seemed a bit harsh even a bit ridiculous. "Without expectations there are no goals" I replied. Looking back, I think I missed the point.
Perhaps the one thing never taught to be expected was to have a purpose. Maybe in some way having a true purpose in life - to be truly needed - may not be the life expected but the life you were meant to have.
Tags: Special Needs Child Parenting Disabled Child
Life isn't about waiting for the storm to pass ... it's about learning to dance in the rain.
The storms, I have waited for more than my fair share to pass. When younger, I fought them. I am now older and wiser.
I would wake to another day of despair. Another day of wondering how I got here and how I would get out. I woke thinking of the boy who broke my heart. The young woman that strengthens me. The little one who keeps my heart beating. The man who has loved me unconditionally and the girl whose suffering has taken my soul, the one who brings the storm.
I had wonderful memories and a happy life. I had known love, affection, happiness and contentment. I held on to those memories. They gave me hope. Hope that I would someday have them again, and I do.
In some ways my life is like a tragic novel. In others it is a story of determination strength and hope. It is a story of motherhood and all the hopes and dreams that we expect, but should not. Some of it is quite funny, some of it is just sad, some of it is just unexplainable. All of it makes us who we are.
The boy that broke my heart. He was 17. There had been a car accident. He was not my biological son, but he was mine. I loved him as mine, I raised him as mine and I miss him as mine. The unexplainable. He died six years ago September 9th. That is the official date but his actual death was a week before when his soul passed through my husband and I as we we stood in the hallway of the ICU. It was an electrifying breeze that went through us, and we knew. Unexplainable - how could such a young, talented and sweet soul be taken - it will forever be the most painful moment of my life.
Regrets come with loss. It's the little things. I still cannot pass his bathroom and not feel regret. Every morning he would wipe toothpaste on the sink and throw the towel on the floor. Every morning I would yell at him. Now, I would give anything to clean that sink and pick up that towel. My daughters bathrooms are a disaster and I couldn't care less. I've learned to let it go.
The young woman who is my strength. She is twenty four now and finding her way. I admire her. She has such compassion and depth. She makes me laugh. Through all the difficult times she could always make me smile. She has been through so much. She lost her father at eight and she lost her brother who was her best friend at seventeen. To say she was devastated would be an understatement. Somehow, she grew strong and optimistic. Youth I guess. A young life with so much sadness and confusion. She has grown into an amazing, independent, successful woman - she is happy - she is a joy. She learned to let it go.
My heartbeat. She is sweet and fragile. In some ways she has been through more than all of us. She has lost her childhood in a sense. She has known loss, heartache and faced the storms way beyond her fourteen years. A lot like her older sister, she is beautiful and kind. She is still the one with her brothers picture under her pillow. She is the sensitive one. Despite it all, she has found a way to overcome all the adversity and thrive. She is once again happy, outgoing and just being a kid. She learned to let it go.
The storm hit without warning. The storm affected everything in its path. The storm raged inside my child. She was the most beautiful baby I had ever seen. She was healthy and happy and sweet. She was different. No one else saw it, but I knew. A mother just knows. She is fifteen now. Her OCD and endocrine disease has taken over her life. She is brilliant, not just a good student or smart, brilliant. Her life has been a series of doctor appointments, blood work and brain scans. She is tortured by her illnesses both physically and emotionally. She grapples with the irrationality of her life on a day to day basis. She is a prisoner of anxiety. She has faced the storms. At times I would say she has even provoked the storms, but she is outrunning them. She no longer harbors the bitterness and anger of being chronically ill. She is getting better. She has hope. Hope is the mainstay. Without hope there is nothing. How does she find the hope - she's learning to let it go.
On some level, happiness is a conscious decision. It is the decision to not feel guilt over things of which we have no control, to let go of regrets, to be happy, to intentionally seek the good in life and people. Accept what you are given and never give up hope.
Life is too short.
Learn to let it go.
While we waited for the storm to pass ... we learned how to dance in the rain.
Tags: Anxietydepressionautismgrief Hope
Potpourri, I have always loved that word. The word congers up wonderful thoughts of bountiful fragrances, a palette of beautiful colors and a feeling of tranquility. It brings back memories of my grandmothers house with little aromatic bowls that gave her home its signature scent. It is a wonderful word.
The word potpourri has several definitions. The first, as I mentioned, is an aromatic mixture of dried herbs, spices and flowers. It also, in present day use, describes a miscellaneous collection or medley. The etymology of the word isFrench pot pourri, literally, rotten pot dated back to 1749.
When using the word Potpourri in reference to the child with a mental illness it takes on a whole new meaning. Professionals use the term "co-morbidity". I think I like "potpourri" better. Co-morbidity is the term used for multiple disorders. It is "literally a rotten pot".
Comorbidity makes for high rates of misdiagnosis among these children. It is rare that you find a child with just one disorder. Tourette Syndrome, OCD, ADD, PDD, Autism, Depression, Bipolar disorder the list goes on and on. Often times these children have one or more additional disorders which not only makes the diagnostics more difficult, but the treatment pure trial and error.
Adding to the confusion are the subgroups within the disorder. An example: A child with Tourette syndrome with severe exacerbation of tics or ocd symptoms after a strep or viral illness would be considered for a diagnosis of PANDAS or PITANDS as their subgroup. A test to identify the D8/17 marker would be performed. Treatment would be initiated. Seems simple, but it is not. There are subgroups within even this subgroup. Example: some children with PANDAS or PITANDS have different presentations. There is a subgroup that only have exacerbations after viral illness and others only after bacterial. Some respond to antibiotic treatment and some do not. On the autistic spectrum, there are some children who while with fever have significantly reduced symptoms. Dr Andrew Zimmerman at John Hopkins has done studies on these children and its relationship to the release of cytokines. Some of these children respond to augmentin - a preparation of amoxicillin and the potassium salt of clavulanic acid - rather than its base component amoxicillin alone,others do not. It is an eclectic puzzle. A potpourri.
Treating the child with multiple disorders, a potpourri, is a daunting task. Sifting through the symptoms to label the disorder is sometimes futile. It is understandably necessary for insurance coding but often times serves no purpose. Treating the symptoms is key. Looking at the child as a whole instead of a diagnosis, I feel, often times serves the child better. We are all complicated creatures but the child with a mental illness is like a convoluted bowl of emotional potpourri.
Tags: Autism Tourettes Ocd Pandas Depression Anxiety
I can't think of anything more painful or more heart wrenching than that of the day to day life of a parent of a child with a serious mental illness. This is not to diminish the pain of parents of children with medical illnesses or of parents who have lost a child, but it is different. The isolation is palpable. The acceptance and sympathy is not universal. There is still, in this day and age, shame and the perception of failure. Yes, there are wonderful support groups and caring and knowledgeable doctors, but at the end of the day parents of children with mental illness are alone. Marriages are tested, siblings are adversely affected and families are held hostage by the disorders. Life becomes a constant calendar of doctor, psychiatrist and therapy appointments. Many families find themselves in financial ruin. It seems there is always one step forward and two steps back. There is the medication roller coaster which once on, seems impossible to get off. There is the guilt and sleepless nights worrying if the decision to medicate is the right one and what the side effects may be, not only now, but in the future.
Here is an article posted today in the Los Angeles Times
Mentioned in this article is the lack of services available for these children and their parents. Respite care is not offered, long term hospitalization is not offered and many specializing psychiatrists do not take insurance. It truly is a sad state of affairs when our healthcare system cannot accommodate these children and their families.
Having a child with a mental illness is a challenging and difficult experience. It takes a strong and special parent to deal with the daily uncertainty.
Being the parent of a child with a mental illness can also be the most rewarding and life altering. Little successes become major triumphs. Priorities become clear. Parents develop a bond that most spouses will never know. There is true understanding of unconditional love. And when the war is won, there is no better victory.
The road for these families is long but the reward at the end is great.
Tags: Autism Schizophrenia Depression Bipolar
Many people diagnosed with mental illnesses seek the help of psychiatrists and other mental health care providers. It seems the obvious treatment. What many people with depression, anxiety and phobias, do not do, is seek out consultations to find a possible medical cause for their symptoms.
There are many endocrine,neurological and cardiac diseases
that present symptoms of depression, anxiety and even intermittent bouts of rage. Proper treatment of these disorders can reduce and often times resolve the psychiatric symptoms. Some patients will benefit from both psychiatric and medical interventions. This is not to say that every person with a mental illness is misdiagnosed, but many are.
The endocrine system, is a complex group of glands. These
glands make hormones which help to control activities in your body. Along with growth, metabolism,reproduction and development, hormones control the way you respond to your surroundings. Diseases that alter the hypothalamic -pituitary-axis may produce anxiety-like states. It important to differentiate between medically induced and primary anxiety disorders. Treatment with psychotropic medications alone may not significantly improve the emotional symptoms and may, in some cases, contribute to the hormonal
Anxiety frequently occurs in endocrine patients with adrenal
dysfunction, Cushing's Disease, Carcinoid syndrome, hyperparathyroidism, pseudohyperparathyroidism, hyperglycemia, hyperinsulinemia, pancreatic tumors, pheochromocytoma and thyroid diseases including hyperthyroidism, hypothyroidism and thyroiditis. These diseases can be the organic basis for an anxiety disorder and with proper diagnosis and treatment can improve the quality of life of many anxiety sufferers.
Polycystic Ovarian Syndrome is another very common endocrine disorder which, in a large percentage of patients, causes anxiety and depressive states. PCOS is caused by irregular levels of estrogen, progesterone and testosterone. It is estimated that 1 in 10 women have PCOS. Women with PCOS may suffer from acne, excessive hair growth, loss of hair, infertility, loss of menses, diabetes and weight gain. Some data reports that almost 80% of these woman suffer from anxiety, depression and other mood disorders. Treatment with birth control pills as well as medications to regulate insulin along with proper diet and exercise can significantly improve the physical and emotional symptoms of this syndrome.
Along the way you may have what is referred to as an
incidental finding. These unanticipated findings in the course of testing or medical care can hold they key to some anxious states. An incidentaloma is a tumor (-oma) found by coincidence (incidental) without clinical symptoms or suspicion. In our case it was a pituitary tumor, a microadenoma. Cushings Syndrome -an endocrine disease known to cause anxiety and phobic states -is suspected, as well as Polycystic Ovarian Syndrome.
Although I have primarily focused on the endocrine -
anxiety connection, the list of diseases, disorders, syndromes, and medications that can contribute to or cause anxiety and depression is significant.
Treating depressive and anxiety disorders, in some cases,
needs to be a joint effort with a team of psychiatric as well as specializing physicians working in harmony.
It has been my experience as a parent of a child with a severe anxiety disorder,that what you see is not always what you get. Proper diagnosis is the key. Finding the origin of a mental illness is often like finding a needle in a haystack.
It took seven years and four endocrinologists before the
proper treatment was initiated, a lot of time lost.
Tags: Anxiety Depression Ocd
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