When Your 6-Year-Old Has Become a Caregiver as Well as a Sibling

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I started this blog to raise awareness mostly, about Alexander’s disease and what it’s doing to my son, Corry. But it’s also important to recognize the impact life-limiting conditions can have on other family members. My blog page is a place for my strong feelings. This particular piece is to recognize that often “the other child,” or children, from families similar to ours can be overlooked and undervalued. They don’t get the credit they deserve.

The guilt I carry for my daughter, Lily, is ever present. She holds so much on those little shoulders of hers. She has no choice but to weather this storm. The cards we have been dealt have seen Lily take on a lot more than she should have to. She can appear to be a happy, sociable child, full of energy, full of life — A typical 6-year-old girl. And yet she is worn. Tired.

I have many days where I crack. I have never been an emotionally easy person. I am especially fragile of late. When functioning on little sleep, an empty stomach and behind cloudy eyes, the smallest of difficulty can feel intense and overwhelming. I can damn well blow it all out of proportion. There have been times, too many times, that I have been a person I don’t want to be amidst my fear and anger at having to watch my son in pain, violently sick, unable to hold himself up, frightened at what is happening to him.

At the sight of his NG tube coming out just as we’ve arrived home from the trip to hospital to have it put back down already.

At the state of the house while I’m just sitting around staring at it all, not an ounce of energy to do anything about it.

During these times, I have said some absolutely unnecessary things to Lily. I have acted selfishly. I can resort to becoming a spoilled brat at the unfairness of it all.

She once gave me this response to my outburst: “It’s OK mom. You feel sad about all of this. I love you.” She cuddled me while I cried. I cried out of exhaustion. For release. I cried for the overwhelming guilt I had that she felt I should be excused for speaking to her that way, that she was coping with her emotion in a far better way than I was.

Mostly, I cried because I couldn’t quite believe how absolutely amazing she is. How proud I was and am of her. She could see my weakness and run with it. She could make sense of my actions and not take it personally.

I feel sad that she has had to become so emotionally ready at such a young age, but also blessed that she has been able to do so and find the strength within herself to take this on.

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Lily is a sibling to Corry and a daughter to me, but she is also a caregiver, and a truly amazing friend. She’s a person who sees me at my worst and still shows me love. She’s a little, but very grown up, 6-year-old girl who I hear get out of bed in the morning and whisper to her little brother, “Come and play trains with me, so mom and dad can have five more minutes of sleep.” A sister who so often has to take second stance to her brother’s needs, but adores him nonetheless.

You are everything to me, lovely Lily. I hope that you know. I am here for you, as you are for me. Even when I have to be away from you, for appointments and hospital stays, and when I miss your school events and your activities.

When you can’t have your friends over to play.

When we are not together for your birthday.

When you have to go to stay with other family members.

When Corry has slept all day and therefore stays up later into the evening, while you stick to your routine.

When he gets to choose exactly what he wants to eat, even if it’s chocolate all day long, because anything for him is better than nothing.

I know it must seem unfair.

That at times you will feel hurt and pushed out. That you must feel sad and fed up with all of it. I will feel it too. It’s never my intention for you to feel bad. This was never part of my plan for you, or for Corry. It was not the plan for me or for Dad. But we must roll with it. Through these tough times we will be connected like no other. Together we can see through the deepest darkness.

I love you so.

A version of this originally appeared on littlehartsblog

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How ‘The Real Housewives of Beverly Hills’ Is Harmful to ‘Spoonies’ Like Me

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Let me start by saying that I have been a fan of this franchise from the very beginning of the O.C. edition. I have often called it my guilty pleasure, a show that I’m almost embarrassed to admit that I watch. But I follow many of the different series for different reasons, and the Beverly Hills housewives have always been a favorite of mine.

As part of the storyline for this season, Mrs. Yolanda Foster is documenting her daily battle with chronic illness. I applaud her for having the courage to take her very difficult fight public in such a revealing way. In the past her illness has been alluded to often with her cancelling plans at the last minute or not partaking in an activity due to fatigue. This season she is sharing more about the types of treatments she is working through and we are seeing more of her daily struggle in depth.

(Photo credit: Instagram @bravotv)

As a person who has struggled with chronic (and incurable) illness for the past seven years, I can most certainly relate to Mrs. Foster’s situation and feel a great deal of empathy for her and for her family.

Chronic illness is a difficult battle to face on your own and it can very easily tear a family to pieces. It does not just affect the one afflicted with the disease but directly impacts those family members who are closest. Your whole lifestyle has to change to accommodate your illness and therefore the lives of those closest to you are changed as well. It’s not easy. The illness of a loved one is one of the most difficult things a family has to deal with. I applaud Mrs. Foster’s courage to document her fight in such a public manner with the hope of raising awareness for her disease.

Lest we forget this is a reality series documenting the lives and interactions of six affluent women from Beverly Hills, a bit of drama must always be sprinkled throughout. This is where I fear the producers of this show may do the most damage. In just about every episode thus far this season there has been a storyline of the women in this group expressing doubt of Mrs. Foster’s illness.

Lots of questions have been asked by these ladies but none of which have been answered by anyone with specific knowledge of the patient and the disease. The ladies have doen everything from doubting her illness altogether to questioning her treatments and medical specialists. The idea this might all be “in her head” was even entertained. These conversations have been given a lot of screen time by the producers and then always are followed up with blog posts from the wives and are rehashed on after-shows and other news outlets.

I am a very sick person who often looks completely healthy (we are often referred to as “Spoonies”). But I’m not. I’m as far from perfectly healthy as I’ve ever been. While I do not share the same specific diagnosis as Mrs. Foster, we fight very similar fights. Every day when we wake up we have to make choices and be very selective about where we should expend our energy.

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The fact that the show is giving so much attention to the doubt Mrs. Foster’s “friends” express about her illness is damaging to those of us with chronic illnesses. We are constantly bombarded with doubt, with condemnation and with suspicion. This comes at us from every angle — family, friends, coworkers, medical professionals, pharmacists and even new acquaintances. Often fighting and educating against the doubt and misinformed is just as, if not more, draining than fighting the diseases that plague our bodies.

While Mrs. Foster is taking the brave step to fight her illness in the public eye, the production of this show is casting her in a negative light by focusing on the doubt and conspiracy theories being whispered about amongst her friends. Through this platform the producers have an amazing opportunity to educate and enlighten the general population. As a “Spoonie” you can sometimes get up and out of bed and take a “smiling selfie” and then there are other times when you barely have the energy to change from sweatpants to clean sweatpants. Sometimes you can get up and out of the house for a social event but then spend the next three days in bed recouperating. Everyone has good days and bad days and those who are chronically ill are like that as well. We have good days and bad days, though often the bad out weigh the good.

I would like to encourage the producers and the cast to use this media platform to cast Mrs. Foster and her disease in a brighter light. One that demonstrates the ways her friends and those close to her could be of help as opposed to constantly casting her in a shroud of doubt.

By choosing to highlight the doubt Mrs. Foster’s friends have about her disease the producers are making it that much harder for the rest of us to get the love and support we need. If someone looks at this show and sees Mrs. Foster’s friends don’t even think she’s sick, they may wonder how could I or any other “Spoonie” possibly be sick either.

Thankfully, this show is not the end all, be all, of our community of “Spoonies.” We will all continue to get up every day and fight. Yolanda Foster, we welcome you to our “Spoonie” community with open arms of love, support and understanding. I pray you surround yourself with those who can lift you up and carry you through your journey with chronic illness, and let go of those who cast darkness and doubt.

A version of this post originally appeared on Spoonie Mama.

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My One Wish for the New Year as a Brain Surgery Survivor

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I do not write this post to gain sympathy or pity. I am only hoping people will think twice before being so judgmental of others.

Nobody knows what another person is going through and we can all try to be a little more kind. My personal resolution for 2016 is to be more understanding of people than I already am. Sometimes all people want is for someone to be understanding.

My friend Hanah posted something tonight that rings so true for me today. For people with chronic illness we expect to live with some sort of pain every day, but we hope for a break from it if even for a few hours. My pain “break” is probably enough to still end a lot of people up in the emergency room or at least totally confined to their beds unable to function for several days at a time.

Today I am in the middle of one of my bad pain days. None of my rescue meds have helped. My heat packs seem worthless. I Can’t keep my food down. There are too many other symptoms to list, but my body feels like it’s killing itself from the inside out. This is what happens to me when I have those “pain break” moments and try to accomplish as much as I can in that short amount of time in which I am most functional. My body pays for it afterwards.

I know people may look at me and think things like, “You don’t look sick. You seemed fine yesterday why can’t you do this today?”

I don’t look sick because idiopathic intracranial hypertension is invisible.

What you don’t see are the scars from the 5 brain surgeries I’ve had. You don’t see me in full body sweats, drenching the sheets from the pain. You don’t see the sleepless nights up until 2:00 a.m. with a pressure headache, then jolted awake at 5:00 a.m. by a migraine. You don’t see the pulsatile tinnitus ringing away in my ears like church bells. You don’t see the trigger point injections, nerve block injections, lumbar punctures, botox, nasal nerve blocks, shunt taps, CT scans, MRI’s, blood labs, IV infusions, countless medications, etc. You don’t see me hugging the toilet, unable to keep food down but still not able to lose weight because of medication weight gain side effects and being too disabled to exercise normally. You don’t see the dietary restrictions causing my spinal fluid to increase, creating more problems. You don’t see me not able to tie my shoes because the pressure is so great in my skull I nearly black out bending over. You don’t see me unable to gain enough strength to shower for three days at a time. You don’t see me unable to keep up with simple housework or laundry or walking the dog or carrying groceries or getting the mail. You don’t see me walk with a cane or use my handicap placard every day. You don’t see the cognitive struggles. You don’t see me wear tinted glasses for a week straight because of extreme light sensitivity. You don’t see the depression. You don’t see the hundreds of hours and thousands of dollars spent at doctors offices.

You don’t see the pain.

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You only see what I want you to see. My life is forever changed. You might think I am bitter (for about two seconds each day then it goes away because what good does that do? Absolutely nothing!).

I have lost so much but I have also gained a new respect for life. I am more thankful for the little things. I am more thankful for the relationships I have with family and friends. My circle of people who “get it.” I’ve learned to work to cut out negativity. While I acknowledge I will be sick for the rest of my life, I will not give up fighting.

I am a Survivor.

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When the ‘Big Kid Still in Diapers’ Is You

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My biggest fear as a child wasn’t of the dark or monsters in the closet. It was being asked by a friend if I could sleep over.

I was determined to not let anybody figure out I was a big kid still in diapers, and I spent my childhood trying to cover up my problem. I refused to wear tight jeans, and I always made sure the waistband of my pants was above my belly button.

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What was I to do if I was asked to a sleepover?

It would be impossible to keep my incontinence a secret. I could wet the bed and I would have to throw away my urine-filled diaper somewhere. I always thought if my friends found out they would make fun of me, call me a baby or stop being my friends at all.

One morning I woke up and decided I was going to go out diaper-less. I was going to wear underwear and one of my only pairs of jeans. I went to school and it all went well until recess — the dreaded 30-minute period of not being able to go inside and use the bathroom.

I stood next to the door waiting for the bell to ring, and all of a sudden I had the urge to pee. I had no control over it. The wetness spread down my legs and up my shirt. It went like wildfire. The one thing I dreaded most was happening to me. I had wet my pants in front of all my classmates. I ran inside not waiting for the bell. I sprinted into the health office with tears flowing down my face. The school nurse, the person I trusted most at that school, looked up at me and she didn’t have any disappointment in her eyes.

“Sophie, this isn’t your fault,” she said, handing me a bag with a fresh outfit I brought from home for emergencies like this.

I changed out of my soiled clothes, dried my tears and went to class. I went into class and nobody batted an eye. All my friends reassured me what happened wasn’t my fault and it wasn’t anything to be ashamed of.

It took me years after they said that for me to believe them.

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I did eventually have my first sleepover. I did have to throw away my diaper at my friend’s house.

And my friend was OK with that.

I’m now 17 years old, and I’ve learned there are somethings that you cannot control. Health issues are not anybody’s fault. I’ve learned I don’t have to be ashamed of what I live with, and to live, I must take what I have in stride.

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Why I Do Things That May Make My Chronic Pain Worse

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The other day, someone asked me a very thought-provoking question. Why do I ski, do taekwondo, jiujitsu and all of the other daring things I do on a daily basis if I know it is going to hurt and, ultimately, make me hurt worse? One exciting act of adventure can have days, weeks or even months of consequences. These aren’t reckless, spur-of-the-moment decisions; rather, they are carefully calculated “risks.”

It is a pretty simple response, but I was temporarily at a loss for words. The short answer is that no matter what I do in life, it is going to hurt. Walking, getting dressed, brushing my teeth, and eating lunch… everything is going to hurt. The real question is, how afraid are you of the pain? Are you willing to fight through the pain to do all the things you are passionate about in life?

Pain is an unavoidable part of human life and for people with reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) and other chronic pain disorders, pain is the norm. In fact, many people forget what life is like without pain. So if we sit around waiting for the pain medications to kick in or the pain to break completely, we are wasting valuable time in our short lives for relief that may never come. I am all for being optimistic, but that is the reality. My reality.

I have been in constant pain every day for the last three years. Sad as it sounds, pain has become a part of my life. Even in my dreams, I am in pain. However, the pain doesn’t control me. I am the master manager of my pain. After all, it is my life and I am going to live it to the fullest. I attend college full-time and earn good grades. I am responsible for maintaining my apartment and ensuring that it is kept up. I am active in community service and volunteer at the local children’s hospital where I have been a patient for almost half my life. During the summer, I am a lifeguard at a waterpark. I am a first-degree black belt, and when I am not personally training, I am assisting with classes for the younger children. When the snow flies, I enjoy carving down the slopes for fun, as a ski racer and on ski patrol rescue endeavors. I am doing everything one would expect from the typical 19-year-old college student. The only difference is that I am constant pain.

Trust me when I say that I pay dearly for acting like the typical young adult. I just don’t see pain as an obstacle that should limit or stop me from living, because for all I know, I will always be in some form of pain. Maybe it won’t always be excruciating pain, but it will be there.

So if the opportunity presents itself for me to take a 12-mile kayak trip, a weeklong skiing expedition through the Rocky Mountains, or a chance to hike a 100-mile section of the Laurel Highlands Hiking Trail, you can bet that I am going to take the opportunity to enjoy the thrill of the adventure. I am the boss of my pain. It will never control me. Does it control you? If it is controlling you, are you willing to take that first step to becoming the manager of your pain? The first step is always the hardest, but it gets easier.

Meghan practicing taekwondo

Editor’s note: This story represents one person’s experience and should not be considered medical advice.

Follow this journey on The CRPS Ninja Chronicles.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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My Chronic Illness Manifesto for 2016

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For the past several years, chronic illness has kept me on the couch during New Year’s celebrations. This year, I hoped for a different picture: spending the holiday at a cabin in the woods with my wonderful, patient boyfriend (of almost a year!) and our close friends. Instead, I will be on the couch again.

Due to my ongoing struggles with kidney disease and POTS (postural orthostatic tachycardia syndrome), I am dizzy and swollen as I write this article. I’m disappointed. I’m a little angry. I’m uncertain about how this year will look, how I will get past this illness flare, how my boyfriend will respond when he learns that — once again — I must say “no” to one of our beloved adventures.

For these reasons, I’m feeling the need to remind myself of what I’ve learned through painstaking doctor visits, midnight reflection when I’m up with a blood pressure spike and more nights in than I can count.

In fact, I’m feeling so radical about the following ideas that I’ve decided to write them in manifesto form and share them with fellow Mighty readers in hopes that we will all remember our own intrinsic worth in the coming year.

In 2016, I’m willing to be bold about my own human value. No matter that I’ll be ringing in the new year at home, on the couch, not kissing my favorite person.

1. Dignity

The most basic yet most profound idea I learned this year (thanks, grad school!) is that recognizing human dignity can transform people’s thoughts, actions and interactions.

As a chronically ill person, I can recall many occasions when I felt my sense of dignity slipping away: physical exposure during medical procedures, obvious social difference, even people’s vocal outrage when I, at 25, parked in a handicapped space. However, I’ve learned my sense of dignity is not the same as the universal, equal dignity I share with all people alive. When I think of myself in that way, as a human being with dignity, value and legitimate needs, I am best able to treat myself well.

This year, I urge you to marinate in the idea that you are valuable on the basis of your humanity. No chronic illness, or loss of function or day in bed can change that.

2. Forgiveness

Let me be blunt — there is so much I wish I had done differently during 2015. I wish I had not pleaded so loudly for blood pressure meds in the ER on Thanksgiving. I wish I had stuck to my exercise program after moving to grad school (if I had, my POTS would be better). I wish I had been kinder to my family. I wish life was different.

OK. That’s all true. But I am letting that go.

I can’t change what has happened, and I am not so naive as to think I can change my behavior immediately after the ball drops. What can I do? I can breathe, remind myself of who I am (a human with dignity), view myself with compassion and move on.

3. Inner Life

Maya Angelou, who died two years ago only 30 minutes from where I live, gave the following advice to her son about cultivating an inner life:

“There is a place in you that you must keep inviolate, you must keep it pristine, clean, so that nobody has the right to curse you or treat you badly: nobody, no mother, no father, no wife, no husband, nobody — because that may be the place you go to when you meet god.”

As a creative person with chronic illness, I often lament that my health problems interfere with my memory and ability to make quality art, music and writing. For this reason, I cling to Ms. Angelou’s belief that maintaining an inward sense of dignity can help with social life and finding inspiration.

4. Choice

Ever since my diagnoses, I’ve wondered how other chronically ill people find the strength to endure their own pain and limitation. (For myself, as my family can tell you, I talk/complain/write a lot.)

After the first year or so of hospitalizations, nausea, pain, etc., I became allergic to the notion that I had to bear my suffering silently. What it took me longer to learn, though, is that I have a choice, at every second, about how to view and vocalize my experiences.

This year, I set the intention to hone in on each opportunity for positive choice. I want to choose connection, solidarity and giving others a chance above isolation, self-pity and skepticism.

5. Straightforwardness

I’ll keep this one brief.

As much as I pride myself on being an independent thinker, my mom is always right about one thing — don’t apologize for being sick and after that do your best.

6. Attention

One of the great assets of a life with chronic illness is time. While I’m not thrilled about the amount of time I spend in home or hospital beds, I do place high value on my opportunity to develop the skill of attention.

In 2016, I want to develop more openness to the people I love, as well as sensitivity to even the tiniest beauties in my limited world.

7. Freedom

Here’s the final, and most important, idea I intend to prioritize going into 2016.

It’s that, regardless of my chronic illness, I am free to choose the best life possible under the circumstances. I am free to live with dignity, if I let myself.

And so are you.

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