I love being a mother. It is by far, in the chaos of my life and all the directions in which I'm pulled, the most important responsibility that I have. Sometimes I wonder how much my parenting has been affected by the fact that along with the obstetrical appointments, my growing belly and the morning sickness, there also was a new tremor in my right pinkie finger, a symptom that as a physician myself, I knew was not part of normal pregnancy. And before I could even welcome my new daughter into this world, I was burdened by a different unwelcome companion; a diagnosis of Young Onset Parkinson's Disease. So as my life as a mother began, so did this challenge of living with a chronic, incurable disease.
Parenting is a challenge in and of itself and to do it well is even more difficult. Add into the mix dealing with a chronic disease and the hurdles are magnified. Doubts and concerns that may not enter the minds of our relatively healthy counterparts plague us relentlessly.
I remember the fear I felt as I gazed into my daughter's newborn eyes for the first time -- a fear of the future. Would I be a burden to my children in the years to come? Would others view me as an inadequate parent? Would I be able to keep up with the other parents? Would I be able to be an involved parent or would my disease dictate my day? Would my children be embarrassed by my visible symptoms?
These thoughts consumed me for a very long time and even though through introspection and experience I have a much more optimistic outlook, they do still surface on occasion. But overall I have learned a great deal from parenting three beautiful daughters over the last 15 years. And these are some important caveats.
(1) Consider redefining what you feel makes a "good parent." Is it the physical aspect of raising your child? Playing sports, driving them everywhere they want to go, hiking, biking and so forth? Undoubtedly that can add to your relationship but it doesn't define it. The ultimate goal of parenting, I believe, is to teach your children the necessary life skills and core character traits that will allow them to become productive, independent, compassionate, successful adults. And imparting these life lessons does not rely solely on your physical capabilities.
(2) Practice self-care. The old adage, "you can't take care of anyone else unless you take care of yourself" is particularly applicable when it comes to chronic disease. Extreme self-care as I like to call it, is a necessary part of your lifestyle routine, not an indulgence. Otherwise it's very difficult to attend to the needs of your family when you neglect your own.
(3) Build your support network. Family and friends, neighbours, parents from school -- all can be a part of your strong social network. At one time it was said, "it takes a village to raise a child." That is not really true any longer if we're referring to society at large where we have to be more cognizant of potentially adverse influences. But we can create our own "village" made up of trustworthy, dependable and supportive individuals to help with some of the practical issues such as taking your child for a play date or picking up your children from school and so forth.
(4) Re-evaluate your negative thinking. Contemplate why you are concerned about how others' may judge your parenting ability. Ultimately you will begin to see that this really has more to do with your own self-perception and insecurity. In order to move past those feelings, we first have to recognize those negative affirmations and objectively look at our parenting capabilities. Sure you may have to modify your activities due to physical limitations but that does not mean you can't be a fantastic parent. And the evidence of your parenting will be manifested in your children. Don't feel the need to explain or justify your abilities -- focus on parenting with love and avoid worrying about the scrutiny you feel you may be under because truthfully there often is no judgment beyond our selves.
(5) Change your expectations. Our bodies are affected, our capabilities for certain tasks are impacted and if we remain obstinate about continuing on with the daily grind in the same way we always have, we are setting ourselves up for disappointment and frustration. From changing and bathing my daughters as newborns to styling their hair now that they are older. From helping them with their school projects to running after them in the yard. From showing them how to colour inside the lines to teaching them how to use a knife and fork. Some of these examples may seem rather trivial but when a disease that never gave you a choice places those limitations on you, it is supremely frustrating. Yet no matter how frustrating, we must be wiling to compromise, to accept our limitations and our "new normal." It doesn't mean that you won't be able to accomplish what you would like to but perhaps you may have to modify the activity, take more time to complete it or delegate some of the responsibility.
(6) Model for your children. Recognize that your children, regardless of their age, will take cues from you when they decide on how to react to your illness. And those clues may be verbal or nonverbal. Much like toddlers looks to their parents when they fall and they cry if their parent panics or they pick themselves up and toddle on if their parents are nonchalant. Likewise if your children see you constantly or overly upset, pessimistic or self-conscious about certain aspects of your illness, then they will adopt the same mindset. Keep that in mind particularly on those particularly difficult days.
(7) Don't hide your emotions. Although we love to believe that we are invincible in the eyes of our children, I believe it is more important to show them that it is normal to feel negative emotions such as discouragement, sadness or frustration. Expressing these feelings does not mean that you are weak -- just human. The important thing is how you face your feelings. To succumb under the weight of negativity is not a productive response and can be overwhelming for children to witness. However acknowledging that you are having a bad day, that you are not infallible teaches children that it's OK to express those feelings and that it is possible to work through them in a constructive manner.
(8) Teach your children. Use this illness experience as an opportunity to impart important life lessons to your children. By having an open dialogue with your children about certain aspects of your illness experience, they will learn empathy and compassion, core character traits that will serve them well throughout their lives. Turn their "me focus" into a "we focus."
(9) Don't let guilt influence your parenting. The uncertainty of my functioning day to day is not only frustrating but when I think of my daughters, it sometimes leads to feelings of guilt. They are stressed enough by the pressures of school, their peers and dealing with what life in this fast-paced world brings their way. And I hate to think that I'm adding to that burden. I'm sure on days that I'm feeling overly tired and symptomatic I've let the occasional extra treat pass by me or let the TV run longer than usual. Trying to make up for a missed trip to the park or a movie left unseen -- trying to assuage my guilt as much as indulging them. Guilty parenting is not a good thing. Luckily time and experience have taught me that as children, their sense of security comes from knowing that overall I'm a soft place to fall but not a pushover -- a fine balance for any parent regardless of health issues. A balance I struggle with but am mindful of.
(10) Finally try to abandon your fear of the future in order to begin living your present. The joys of parenting are often made of the small stuff, the spontaneous, intimate moments you share with your child. If you're preoccupied with disability and your focus is on all the ways you have changed and all that your illness has taken away from you, you will miss those moments that bring much happiness and satisfaction.
Parenting with a chronic disease is not a new phenomenon. I've lived with this challenge for over 15 years now during which time my chronic illness has progressed, making some of the practical aspects of parenting much more difficult. But by incorporating the fundamentals listed above I have found you can change your life experience as a parent. Although I obviously wish I didn't have to deal with this diagnosis, it has taught my family and I a truly momentous lesson -- that at some point life will bring all of us challenges and it is how we face those challenges that will determine the type of individuals we become -- a life lesson that if learned will be tremendously impactful for the future of our children.
This disease, which <a href="http://rarediseases.info.nih.gov/GARD/Condition/6506/Gigantism.aspx" target="_hplink">according to the NIH</a> is most often caused by a begnin tumor in the pituitary gland, results in an excess of GH, or growth hormone. This causes sufferers to grow abnormally large, not just in terms of height, weight but also organ size. It results in complications like delayed puberty, increased sweating, and secretion of breast milk.
Characterized as an eating disorder, <a href="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pica" target="_hplink">Pica</a> causes people to eat what the <a href="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pica" target="_hplink">National Organization for Rare Disorders describes as</a> "non-nutritive" things. That umbrella term can include (but isn't limited to) dirt, clay, paper, and paint. Interestingly, it's not unusual for young kids to experience transient pica as a kind of phase, and <a href="http://www.americanpregnancy.org/pregnancyhealth/unusualcravingspica.html" target="_hplink">pregnant women</a> are also known to develop temporary pica cravings. The cause? Unknown. But in order to be diagnosed with full-blown Pica, a person's symptoms must last for more than a month.
MSUD, which is passed down through families, is a life-threatening metabolic disorder passed down through families that stems from the body's inability to process certain amino acids, leading to a build-up of them in the body. <a href="http://rarediseases.info.nih.gov/GARD/Condition/3228/Maple_syrup_urine_disease.aspx" target="_hplink">According to the NIH,</a> symptoms usually surface in early infancy and can include vomiting, lack of energy, seizures, and developmental delays. MSUD takes its name from another symptom -- the urine in affected infants smells like caramel or maple syrup.
Situs Inversus is a congential condition in which internal organs of stomach and chest lie in mirror image of their normal body position -- something many sufferers aren't aware of until they seek medical help for an unrelated problem. <a href="http://en.wikipedia.org/wiki/Situs_inversus" target="_hplink">People with Situs Inversus</a> typically wear some form of identification to help doctors in the case of a medical emergency.
Trigger thumb, or trigger finger as it's sometimes known, causes a person's finger or thumb to get caught in a locked position. <a href="http://www.mayoclinic.com/health/trigger-finger/DS00155" target="_hplink">According to the Mayo Clinic,</a> it can then stay stuck or straighten with a painful "snap." The cause? It depends. Trigger Thumb is the result of a narrowing of the sheath around the tendon in the problem figure, but that can be caused by a lot of things, including any activity that requires people to grip things frequently. Trigger Thumb is also more frequent in women.
Once the disease of sailors and pirates, <a href="http://www.ncbi.nlm.nih.gov/pubmed/16911372 " target="_hplink">scurvy does still exist in the United States,</a> though predominantly in older, malnourished adults. It usually stems from a Vitamin C deficiency, which can result in gum disease, skin leisons, and swelling of the joints.
This progressive genetic disorder causes sufferers to store excess copper in tissues, including the brain and liver. <a href="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Wilson's Disease" target="_hplink">Though the Mayo Clinic says</a> that the body depends on copper in order to use iron and sugar, too much of it in the body can have real consequences. Which is why sufferers of Wilson's Disease are prone to liver failure.
<a href="http://www.utdallas.edu/research/FAS/about/" target="_hplink">According to researchers at the University of Texas at Dallas,</a> this speech disorder causes people to experience a sudden shift in their accents and though it is known to be caused by things like brain trauma, conversion disorder, or multiple sclerosis, an exact reason behind the syndrome is unknown. Sufferers of FAS dramatically shift their speech in terms of timing and intonation, which often causes them to sound foreign, but they remain totally comprehensible. <a href="http://www.utdallas.edu/research/FAS/about/" target="_hplink">Documented accent shifts</a> include from American English to British and from British to French.
People who suffer from this acquired neurological disorder experience repeated, often painful, muscle spasms as well as muscular rigidity and stiffness. <a href="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Stiff Person Syndrome" target="_hplink">According to the National Organization of Rare Diseases,</a> spasms can occur at random or they can be caused by something as seemingly benign as light physical contact or an unexpected noise. The cause of Stiff Person Syndrome isn't yet known, but symptoms can be stabilized with medication. Left untreated, however, a person can lose the ability to walk.
<a href="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Carcinoid syndrome" target="_hplink">According to the National Organization of Rare Diseases,</a> about 10 percent of people with carcinoid tumors -- which <a href=" http://www.mayoclinic.com/health/carcinoid-tumors/DS00834" target="_hplink">the Mayo Clinic says</a> are slow growing tumors that produce excess serotonin and usually appear in the gastrointestinal tract or lungs -- get this syndrome. It occurs only in patients whose tumors have metastasized to the liver. The symptoms? Wheezing, hotness, and extreme facial blushing.
Children and adults afflicted with <a href="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Cyclic Vomiting Syndrome" target="_hplink">CVS</a> experience recurrent episodes of severe vomiting, which can last for days, followed by sudden periods of no vomiting. While kids are likely to experience more frequent attacks, adults's often last longer. To date, the cause of CVS is unknown.
This obscure, <a href="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Peeling Skin Syndrome" target="_hplink">genetic skin disorder</a> does exactly what its name implies: causes sufferers to experience constant shedding of their skin. (In some patients, peeling is limited to the feet and hands.) Along with that, sufferers often feel itching and redness -- symptoms that can appear from birth or develop later in life. Although the exact cause is unknown, <a href=" http://www.nature.com/jid/journal/v130/n6/full/jid201023a.html" target="_hplink">a mutation in the TGM5 gene</a> has been identified in many sufferers.
This is a blanket designation for several rare platelet abnormalities, most of which lead to mild or moderate bleeding disorders. <a href="http://rarediseases.info.nih.gov/GARD/Disease.aspx?diseaseID=5034" target="_hplink">According to the NIH,</a> the problem stems having limited granules -- the parts of platelets that, among other things, store ADP -- the energy released when a molecular bond is broken. That reduction in storage space inhibits the platelets' ability to secrete <a href="http://www.biology-online.org/1/2_ATP.htm" target="_hplink">ADP</a> in a speedy fashion, which is thought to be what causes the bleeding. Classic symptoms of a Platelet Storage Pool Deficiency are nosebleeds, excessive bruising, and profuse bleeding in surgery.·
Only nine people in the United States are known to have this disease, which was just given a name in a recent study in the<em> New England Journal of Medicine</em>. ACDC, or arterial calcification due to CD73 deficiency, results in calcium build-ups in the arteries below the waist of sufferers and in the joints of their hands and feet. <a href="http://rarediseases.info.nih.gov/files/NIH ArterialCalcNEJM-final.pdf" target="_hplink">According to the NIH,</a> the breakthrough discovery found that the disease is related to a variant in the NT5E gene.3
<a href="http://rarediseases.info.nih.gov/GARD/Condition/6191/Conversion_disorder.aspx" target="_hplink">This condition,</a> which typically occurs after an extremely stressful emotional event, causes a person to experience sudden blindness or paralysis that can't be otherwise explained. People with mental illlnesses are at particularly high risk and psychological treatment can help lessen the symptoms.·
Ochronosis results in black or blue external tissues, often the ear cartilage or eye, though it can occur throughout the body. It affects people who suffer from certain metabolic disorders, but it can also be caused by exposure, though <a href="http://www.ncbi.nlm.nih.gov/pubmed/11705248" target="_hplink">scientists</a> aren't exactly sure to what. Not just a cosmetic issue, the affected areas can become brittle and degenerate over time.
This condition, which is caused by genetic mutations in the so-called ACADVL gene, keeps people from converting certain fats to energy. <a href="http://rarediseases.info.nih.gov/GARD/Condition/5508/VLCAD_deficiency.aspx" target="_hplink">According to the NIH,</a> the deficiency often presents during infancy in symptoms including low blood sugar, weakness, and lethargy.
As the name suggests, Hairy Tongue is a condition in which the tongue develops a black, hairy texture. <a href="http://www.mayoclinic.com/health/black-hairy-tongue/DS01134 " target="_hplink">According to the Mayo Clinic,</a> the disease is "harmless" and is caused by an overgrowth of bacteria in the mouth, which can be treated with antibiotics. <a href="http://rarediseases.info.nih.gov/GARD/Condition/6561/Hairy_tongue.aspx" target="_hplink">The NIH reports</a> that hairy Tongue can also present as brown, yellow, or green discoloration. ·
This obscure, inherited disorder presents at birth and causes infants to grimace when, in fact, they are attempting to smile. <a href="http://www.everydayhealth.com/health-center/ochoa-syndrome.aspx" target="_hplink">The disorder also includes</a> an extreme urinary abnormality: an obstruction that interrupts the connection between nerve signals in the spinal cord and bladder, leading to incontinence. <a href="http://rarediseases.info.nih.gov/GARD/Condition/104/Ochoa_syndrome.aspx" target="_hplink">Though treatment does exist</a> in the form of antibiotics and bladder re-education, some patients can develop renal failure in their teens and 20's, which can be life-threatening.
This syndrome, caused by a particular calcified ligament or elongated bone, frequently causes sufferers to feel that something is stuck in their throat. (Scientists don't know the reason behind said elongation/calcification.) Other symptoms can include ear and throat pain as well as difficulty swallowing. <a href="http://rarediseases.info.nih.gov/GARD/Condition/9401/Eagle_syndrome.aspx" target="_hplink">According to the NIH,</a> it can be treated surgically or non-surgically with steroid injections and other anti-inflammatories.
<a href="http://www.mayoclinic.com/health/progeria/DS00936 " target="_hplink">According to the Mayo Clinic,</a> only around 130 cases of this devastating genetic disorder have been documented since it was discovered in 1886. Affected babies normally appear normal at birth, but within 12 months begin to have symptoms like hair loss and wrinkles. <a href="http://www.mayoclinic.com/health/progeria/DS00936 " target="_hplink">According to the Mayo Clinic,</a> progeria is caused by a genetic mutation, but not one that's passed down through families; it's a chance event that affects only one egg or sperm. The average life expectancy for sufferers is 13.
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