Tonight, I Gave In to the Tears

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Tonight I gave in. I caved to the tears. You see, I’m not really a crier. It takes a lot to get me to that place. But tonight was the night the tears came, and when they came, they just wouldn’t stop.

Maybe it’s from the past several weeks having been a behavioral roller coaster when we’d been on such a good roll. Maybe it’s from cleaning up the same mess again and again. Maybe it’s from being “on” 100 percent of the time. Maybe it’s because every single night is a Russian roulette with whether or not either of us get a full-night’s sleep. Maybe it’s from fixing the same thing for dinner over and over because he refuses to eat anything else. Maybe it’s the uncertainty of what the future holds. Maybe it’s because everything that comes so easy for everyone else comes so damn hard for us, if even at all. Maybe it’s because almost everywhere we go, people stare, and my guard is always up.  Maybe it’s from feeling like no one understands, like no one “gets it.” Maybe it’s from feeling so alone in it all. Maybe I finally broke from the weight of it all.

Normally my blogs are positive; I do tend to always look at the brighter side of things. Tonight was not that night. Call it a pity-party if you want, but tonight was a night where it hurt to breathe. Tonight was a night where “super mom” was a human. And this human felt beat, alone, sad and far from “super.”

It’s rained all week in the town I live in. Ironically, I read a quote recently that said, “Even the worst thunderstorms eventually run out of rain.” So if I were to wrap this up with even a grain of positivity, here it is… 

Even the worst thunderstorms eventually run out of rain.

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An Open Letter to the People Who Feel the Need to Tell Me I Have My Hands Full

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Thank you for feeling the need to reiterate what I already know; I have more children than hands. Indeed, I’m not an octopus, although I continuously attempt to be.

Thank you for confirming my fear — that I’m perceived as a walking train wreck when out in public with my children. Thank you for acknowledging that I clearly don’t have things under control, despite my best attempts to plan otherwise.

Thank you for making me feel small.

I struggle with how to respond to your comment. Do I smile even though your comment doesn’t make me happy? Do I laugh with you (although it really feels like you’re laughing at me)? Do I shrug or nod in agreement with you?

Most of the time I feel the need to provide an explanation; Man plans, and God laughs often comes to mind.

But what you don’t know is my life is so much more full than you realize. What you don’t know is my eldest child can’t be the “helper” you say he must be. You don’t know he’s not just shy or tantrum-ing right now. You don’t know the amount of time I spend at doctors and specialists and hospitals with my hands full. You don’t know my enormous bag is packed with more than just the typical array of diaper bag goodies and that I always need to be aware of my child’s health and viability. You don’t know the sleepless nights of monitoring. You don’t know anything, really.

When I get out of my house on time, it’s an accomplishment. Hell, getting out at all is. Most of the time it’s for a doctor or therapist appointment, but that’s our life right now, and out is out. It’s the little victories that make our life full these days.

I don’t feel the need to comment on how light your load is. Wow, you have your hands free! Maybe you should help me, since I’m clearly encumbered. That would be rude to say, and I’m raising my children to be better than that.

So I say, thank you. My children, in all their unbridled glory and imperfections, are blessings, and yes my life may appear to be more than I can bear right now, but we’ve been blessed with a full one, and for that I couldn’t be more thankful.

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14 Things I Learned About Life, Leukemia and Love

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Dear Cancer,

You came into our lives 12 years ago when our son, Karl, was only 4. You came in the form of leukemia — a word I learned to hate.

I also learned that kids who have Down syndrome, like Karl does, are 10-15 percent more likely to get leukemia. I thought that was so unfair, but then I realized you’re never fair. You had no idea who you were picking on when you took on our family.

Karl beat you and beat you good.

He not only survived, he thrived. I know it’s wrong to hate, but I will forever hate you. You did, however, teach me some lessons. I wrote these down when Karl was going through his three years of chemotherapy.

Some things I’ve learned about life, leukemia and love:

1. It’s a shame that we take our family’s love for granted until something as horrible as leukemia makes us realize how valuable love is.

2. It’s hard to look at your child’s bald head. But, when you’re holding him tight, it’s warm and soft and makes you remember him as a baby.

3. True friends never say things like, “I’m sorry I haven’t called, but it’s so hard for me to talk about it.” True friends know it’s hard for me to talk about it too, but I need to sometimes.

4. So much of what I used to consider important in life is now insignificant. You can’t cuddle a big fancy car, you can’t kiss a fancy wardrobe and a nice house won’t crawl in your lap, put its tiny soft hand on your cheek and say, “I love you, Mommy.”

5. I no longer admire celebrities and sports figures. I admire doctors and nurses who work long hours to save my child’s life. They are the ones who deserve the million dollar paychecks.

6. Only a child would smile, hug and a kiss the person who sticks a needle in their spine once a month. And only an oncology doctor or nurse is deserving of such admiration.

7. Heroes don’t save lives on movie screens. They save lives by donating blood, platelets and bone marrow.

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8. The most courageous story I know of is that of a young teenage boy who, after a second relapse, decided he wanted to end the battle on his terms and with dignity. He halted all treatment and died at home in peace.

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9. The second most courageous story I know is of the mother who let her son choose to end his life on his own terms and die at home in peace.

10. When standing at the altar saying their vows, few people realize the true meaning of the words, “In good times and in bad, in sickness and in health.” I now know what they mean, and I know that my husband is truly a man of his word. I will love him forever.

11. My mother is one of the strongest most amazing women I know, and I will never be able to repay all she has done for me. Karl loves her so much.

12. I believe that just when you think you can’t go on, God will throw you a lifeline — hug from a friend, a phone call from a sister or a pat on the hand from a kind nurse.

13. It’s OK to let your child see you scared and crying. How else would they know it’s OK for them to be scared and to cry?

14. There are many ways to cope when your child has cancer, but the best is to hold them tight and know that love may not conquer all, but for now it’ll do.

 

So goodbye, cancer, I thought of you today, but those days are fewer and fewer. I know you hate that, and that thought makes me happy.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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Comedian With Amputated Leg Wants You to Play a Creative Game With Her Stump

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It takes something special to laugh in the face of adversity.

Jackie Hagan, a comedian who lives in Manchester, England, had her leg amputated in the summer of 2013 due to a series of blood clots, BBC News reported.

After recovering from surgery, doctors told Hagan her life-threatening blood clots could come back at any moment. This news led her to embrace a new outlook on life and live each moment to the fullest.

She now performs a solo comedy show she wrote about the experience of losing her leg, called “Some People Have Too Many Legs.” It’s about using adversity to your advantage, according to her website.

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Via Jackie Hagan’s website
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Via Jackie Hagan’s website

It’s a show about growing up and learning how to cope,” Hagan says in the YouTube video below. “And falling in love in awkward circumstances and loss and how sometimes you can get a lot from it. And it’s about how you can be optimistic and glittery without disposing of your wit or intellect.”

Nearly a year and a half since her amputation, she’s decorated her prosthetic with flamboyant colors and glitter.

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Via Jackie Hagan’s website

What do you do when your world is turned upside down?” reads a sentence that appears onscreen at the beginning of her show. “Keep laughing,” is the response.

After her leg healed, Hagan noticed that her stump had a funny-shaped scar on it that resembled a mouth. Soon, she began dressing it up as different celebrities and asking her social media followers on Twitter to guess who it was.

She’s dressed it up as The Hulk:

Harry Potter:

A BBC talkshow host:

And more:

Hagan, who also lives with bipolar disorder, dyslexia and a few other conditions, feels that the experience of having her leg amputated has helped her mature and gain perspective on life, according to the BBC.

In her show, she lightheartedly pokes fun at many stereotypes and stigmas surrounding disability.

I found out that soon as you become disabled you get called brave every five minutes for doing anything, for making some toast — and it is a bit offensive because it is patronizing,” Hagan says in the video below. “But I quite like compliments, so I’ve had to think. And my position is, ‘How dare you call me brave, but thanks for noticing. I am rather, aren’t I?’”

Check out more from Jackie Hagan by following her on Twitter.

Watch part of her show in the video below: 

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I’ve Decided to ‘Hold Hands’ With My Daughter’s Rare Genetic Disorder

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Dear Williams syndrome,

For 15 (almost 16) years you’ve been front and center in my life. Whether or not I wanted you there you were, showing up at the most inopportune moments. Like right before my 3-week-old baby’s surgery you potentially caused cardiac failure on the operating table. Yes, that was one heck of a way for you to introduce yourself to me.

And let me just say that because you’re pretty rare (1 in 10,000) I have to explain way more about you than I ever thought possible. In fact, sometimes I sound more like Wikipedia than I care to admit. Pretty much no one is aware you exist and certainly when I mention your name, everyone thinks maybe you are lethal in some way. Candidly, they think ill of you — at least in the beginning.

There are those of us who have accepted our lives with you embedded in it. Without you there are a number of concepts I would never fully understand: strength, courage, failure, fear and most importantly the concept of the journey. You will be with me on the journey through life forever and I want you to know instead of fighting, kicking and screaming, I’ve decided to simply hold your hand.

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Before you entered my world I was never privy to all the issues a disability such as yourself could manifest. Basic civil rights and independence are no longer a given — they suddenly became goals.

Along this journey so far I’ve met some really incredible people. Some are scared of you and some think you’re pretty cool. They dig your love of music and cocktail personality. Most could do without your anxiety or the anxiety your heart and kidney issues give. But that’s OK, because we just take you to the very best doctors and learn as we go.

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Perhaps your most endearing quality is the fact you love everyone, whether or not they love you. No, really. You’re blind to the fact that people can be fake or can barely even speak to you. You don’t care — you will smile at them until they are converted to your way of thinking, until they see you.

What I’ve found so far is I like holding your hand. It’s oddly comforting and I really think we can foster awareness and acceptance. We can work together to educate and empower and, quite frankly, I’m looking forward to it.

Love,
The president of your fan club

 For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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You’re Frustrating, Crohn’s Disease, But I Can Thank You for One Thing

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Crohn’s, I hope you’re listening.

I’m a newlywed and have missed out on so much of my “honeymoon phase” with my husband. We still have yet to take a legitimate honeymoon. I’ve had to cancel travel plans. I’ve missed parties and celebrations. I had to temporarily give up work while I heal. I’ve gotten by with fibromyalgia since 2006, pushing through and resting when I needed to but more or less functioning and experiencing a “normal” life.

But what is “normal,” really?

Crohn’s, you’ve slapped so many labels on me, it’s hard to remember who I was before you. Your latest label for me is “Patient Zero” — the first documented patient to get mononucleosis while taking cimzia injections. So until we hear from the drug manufacturer, you cannot be treated and will continue to try and control me.

I hate what you’ve done to my energy, my inner light, my social life. I resent the fact you showed up just two months after I married my best friend, Adam.

I had to leave my own bridal shower for the ER. I’ve gone through two colonoscopies and several density scans. I’ve had countless blood tests, visits to Urgent Care and hours wasted in emergency rooms with no success. Through it all, I’ve discovered I have the most amazing support team of friends, family and, most important, a husband who’s given me strength and never once left my side. Because of his strength, spirit and love, you will never make him leave.

You make it so difficult for people to truly understand what a Crohn’s patient goes through. Some days are debilitating enough that it’s hard to make it from the bed to the couch without feeling winded. There are other days where I can push through and maybe get some housework done. Above all else, the simple task of eating (especially during a flare) has become laborsome. The level of pain I experience while trying to digest anything is incomparable to anything I’ve experienced on the pain spectrum. I love food, I love going out for special meals and I love trying new foods and flavors, but that is lost on me for now. You dictate that my breakfast, lunch and dinner is a bottle of Ensure in milk chocolate or vanilla.

Before you, I had all kinds of adventures: traveling, road trips, parties and concerts. When I left Los Angeles for Louisiana in 2011, I drove cross country all by myself and loved every second of it. While I’m thankful to have lived all over and to have had so many amazing experiences, I selfishly resent that I can’t do that anymore. No more spontaneity — everything has to be planned around how I’m feeling, my energy and pain levels, what food will be available and whether or not I can get to a bathroom.

Some days are more difficult than others to maintain a positive attitude. You’ve taxed my immune system, and I now have limitations I’ve never had before. At such a young age. My home life is key — you can’t take that from me. My husband and I enjoy watching movies and TV shows, playing games and laughing at each other. We also have Loki, our kitten who’s brought us both lots of snuggles and love in the face of this frustrating diagnosis. Until I can resume treatment, the love and support of those who truly care for me give me the strength to keep fighting until my next adventure.

For all this, I can thank you for helping me see what is truly important in this life and what not to take for granted.

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 For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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