To the Daughter I Feared Would Have a Disability Like Mine

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I remember the moment I fell in love with you. It wasn’t as soon as I saw the positive result on our pregnancy test, it wasn’t during the weeks I spent the majority of the time hugging our toilet, it wasn’t when I developed heart burn for the first time in my life or suddenly couldn’t go five seconds without having to pee. It was when I got my second trimester sonogram and could see clearly that you were a real baby, a little human – it was when I heard the sonogram technician whisper to me, “It’s a girl.” My eyes filled with tears, my heart exploded and I immediately thought, I love her. Followed closely by a smaller thought, I hope she isn’t like me.

I have a learning disability, which all but defined my childhood. I also had a pretty bad speech impediment and went through five or six extremely frustrating years of speech therapy. Not only was it almost impossible for me to read, but it was difficult for me to pronounce things correctly – almost 30 years later I still remember the horror of attempting to read out loud in front of my kindergarten class, how it felt when the other kids laughed at me. I wasn’t good with social interaction, to put it mildly. I was singled out, ridiculed. When I was 5, a group of fourth grade boys beat me up. They pulled out my hair and made me eat sand. All because I wanted them to play with me, and I couldn’t pick up on the fact that they didn’t want me around until it was too late. I had great parents and teachers who worked with me, and though I was never a straight-A student, I learned to read, write and talk, and my speech has improved to the point that most people don’t notice I still have a problem pronouncing g’s. As an adult, I like that little quirk about myself. It reminds me of the little girl I once was, the difficulties I overcame, and if anyone were to make fun of me for it today – it wouldn’t hurt me. I survived summer school, tutoring, speech therapy, the days when I couldn’t make it through a school day without crying.  I’ve made it through years of depression, anger, eating disorders, victimization. I’m a better person now because of my struggles; I wouldn’t trade them. But I never wanted that for you.

10403167_10100167799502254_7572972799885207748_n You met all of your developmental milestones on time or early. You looked so cute walking around at 9 months old, without a hair on your head. When it was time to talk, you talked. A lot. You used big words, you talked in sentences. You knew all of your colors and your ABCs when you were 2. I allowed myself to hope, to let out the breath I hadn’t been consciously aware I was holding since the day you were born.

When you turned 3, you started to experience what I thought at the time were just tantrums. You were my first child; I don’t know if I really believed  it was normal or if I just couldn’t admit to myself that I knew it wasn’t. You would get mad and dissolve, pull your own hair, pinch yourself. You would scream for hours, lie on the floor and thrash your entire body. There was nothing I could do to help, nothing I could do to stop it. Sometimes, your tantrums lasted for hours. Sometimes, you would have more than one a day. I refused to even think that something was wrong. If anyone suggested to me there was a problem, I would let them know in a colorful way there was nothing “wrong” with you. You were just a little kid. It was normal. I waited for you to grow out of it.

Three turned to 4, 4 turned to 5. I gave birth to your little sister. You adored her. So did I. You both grew. You started school. When we went to open house or to parent/teacher conferences, I looked at your papers and I was proud. I tried not to notice how different they looked from those of your classmates, how your words weren’t formed right, how some were huge, some were tiny, some were capitalized and some were not. You left vowels out of everything. You wrote letters backwards. I hesitantly asked your teacher if that was OK, and she reassured me it was normal for your grade level. I let myself believe her because I didn’t want to think of you struggling. I waited for you to grow out of it.

As your sister grew, I waited for her to do the things you’d done at her age. I waited for her to start throwing tantrums so severe that I worried about the structural integrity of our house. I waited for her to try to hurt herself. I waited for her to lose herself in her emotions, to dissolve into tears and screams and anger. But while you continued to do those things, from kindergarten, to first grade, and then to second grade – she never did. At school, they started pulling you out of class to give you extra help in reading and math. You started to come home crying, telling me the other kids were making fun of you. During second grade, you went as far as faking incontinence to get out of school. The school told me you had a UTI; I didn’t believe them, but I took you to the doctor anyway. They tested you and everything came back clear; they said it could be behavioral. But I already knew that.

I wanted to live with you in denial for as long as possible, keep us both in a safe little bubble where I could believe you would never know what it felt like to feel stupid, to feel less than. I never wanted you to know what it was like to try as hard as you could try and still get a bad grade. I never wanted you to know the sinking feeling you get in the pit of your stomach when you realize someone you thought was being nice to you was really making fun.

All I’d ever wanted was for things to be easy for you. But eventually that changed, and I wanted to find you help. I wanted to find answers; I wanted someone to tell me what to do. For over a year, we went to school meetings, doctors’ appointments, therapy appointments. We heard things like, “She just needs more time with you,” “The school evaluation says nothing is wrong with her, she doesn’t qualify for services,” “There isn’t a big enough deficit,” “We don’t test for dyslexia,” “She doesn’t act like that at school,” just to name a few. I became obsessed with the Individuals With Disabilities Education Act (IDEA) 2004 and Section 504; I spent hours a day reading laws, typing your symptoms into every search engine I could find. We were met with one dead end after another, while you just became angrier, sadder and farther behind.

Finally, just a few weeks before you were supposed to start third grade, my searches led us to a neurodevelopmental pediatrician. They gave us a packet of papers to fill out before your appointment. I filled out those, and then I compiled a detailed history of your life and issues from birth to age 8. I included everything, even things I thought didn’t matter. Instead of rushing through your appointment, this new doctor listened to everything we said. He read the information I provided, he talked to you, and he started testing you. While he was testing your reading, he was purposely invading your space to see how you would react. He made jokes but kept a straight face to see if you could pick up on his sarcasm. I watched you so closely to see how you reacted, to see what answers you gave to his questions. I worried he would miss the little things that pointed towards the bigger issues. But every time I looked at him he was already looking at me as if to say, yes Mom, I noticed that, too.

You were diagnosed with dyslexia and an anxiety disorder on that day. I can’t explain the way I felt. It was the strangest mixture of relief, joy and sadness. Relief because finally, after years of trying, we’d found someone who wasn’t afraid to give us a straight answer, because our searching was finally over. I felt like a weight had been lifted off my shoulders; all of the late nights of obsessing about laws and possible reasons behind your issues had paid off. Joy, because I knew I now had the tools I needed to get you the help you deserved and needed to thrive. Sadness, because you and I cannot live in our safe little bubble of denial anymore.

There will be times when you want to give up, and that is OK. It’s OK to give up. Sometimes, it’s all you can do. But you’re strong, and I know you will be able to pick yourself back up and keep going, and if you can’t, I will be there to help you stand up. There will be times when you wonder why you can’t be like everyone else, why things can’t come as easy to you as they come to everyone else. Always remember everyone has their struggles and a person is not defined by the things they find difficult.

I promise to do my best to look beyond your anxieties and your difficulties, to see you’re just a little kid who wants to have fun, that although the things you’re going through are familiar to me, you’re going through them for the first time and they’re new and scary. I promise to put away the things I learned through my own difficult experiences and to see you as your own person who will have her own struggles, her own triumphs and her own unique life, who has to learn the lessons of life on her own terms, in her own time. I promise to always be there to lend support and to never forget that before I’m your teacher or your therapist – I’m your mother. The most important parts of my job are just to offer you my arms to lay in, a safe place to come home to and lots and lots of love.

If I could go back to the moment I fell in love with you, to the first time I worried you may struggle with the same problems I’ve had to learn to overcome, I would tell myself not to worry.  Yes, there will be sadness, frustration and anger along the way. But through those emotions you will be given many chances to learn just how strong, smart, beautiful, funny and unique you are. You may think it’s a bad thing, to see the world differently than your peers do. But I can assure you, someday the very things that make you stand out, that make it hard to fit it, will be the things that draw people to you. While they will not be your defining characteristics, they will be the things that make you into the amazing, independent, strong-willed, compassionate and wise woman whom I’m already beginning to see forming. You were not made to fit it but to break the mold. And I don’t know why I ever thought that was something I needed to worry about.

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What Was Impossible to See on Diagnosis Day, I See Clearly 3 Years Later

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It’s been three years since we stood in a front of the geneticist who gave us a diagnosis we never heard of: trisomy 5q. All sounded so unreal. I kept repeating that word in my head. Trisomy. It was nothing I’d imagined hearing. Then again, what exactly did I want to hear? Even today I’m unsure. What she has doesn’t have a cure, and we didn’t know how it would impact her life.

I remember my head spinning, my heart racing, staring at her, tear after tear falling and the specialist handing me one article from the internet as an explanation of her diagnosis. She had a copy in one hand and read it out loud to us.

My daughter’s diagnosis came from a printer. One article was found about it.

Stepping out of the office, I was at lost. Where do I go from here? Where do I go from “your child has heart issues” to “your child has a rare trisomy”? How do I tell others? Do I have to tell others? Trisomy means delay; it means people not accepting differences; it means many health issues. I could only see the bad while holding such a beautiful human being in my arms. I couldn’t imagine the worst, but at the time, I believed I had to.

When I heard she may not walk or talk, and she may be severely delayed, I didn’t know what to expect. It wasn’t just a parent’s job anymore; we had to have a team of specialists. Our home was invaded by strangers who wanted my little one to succeed, too. Strangers to this day I can count on when in doubt of something.

This month marks three years with an actual diagnosis. That little girl who wasn’t going to walk according to some doctors is now trying to run. Next month it’ll be a year since she started walking.

That little girl who woke up at all hours to eat just like a newborn now gets 12 hours of sleep. Today I can be thankful for her feeding tube, when originally I doubted if we made the right choice and if by placing it, if she would ever eat orally.

I once was ashamed to tell her story, afraid people wouldn’t get it. Afraid of her differences and acceptance from others.

Today I can tell her story without any hesitation. Today I’m trying to make a difference for the next parent who gets the same diagnosis so they don’t ever feel lost.

If you Google trisomy 5q today, you won’t find just one article — you can find several. This is because of those who believe our story is worth sharing, those who believe being different is beautiful.

I’ll be forever thankful to amazing organizations that believe in our children’s differences and do everything for those kiddos and the world to know about them. I’ll be forever thankful to amazing photographers for taking the time to capture my little one’s magic. I’ll be forever thankful to the specialists who believed in my child and made sure her needs were met.

Unless you’ve lived it, you can’t imagine how difficult it is to hand your child into a surgeon’s arms, spend nights in hospital while holding your little one’s hand and praying things will be OK.

Unless you’ve lived it, you can’t imagine how hard is for some people to see your child the way you see your child. She’s simply amazing. Despite all the health issues, the delay, the fights to eat food orally or to get a sound from her, she is happy, and today, I truly know this is all that matters — knowing she’s happy.

I couldn’t see all of this three years ago. I imagined the worst.

Today, I make sure she’s heard. I am her voice until she can be her own. I am her nurse, her therapists when they’re off-duty, agenda-keeper, tear-dryer, her arms she comes to when needed, the one who protects her and makes sure she knows no matter what difficulties she may have her way, things will be OK. I couldn’t ask for a better child to guide me through motherhood.

Today, I can’t picture her any differently than her own little self.

It would be a lie if I told you my heart doesn’t ache when a typical 3-year-old comes to me and tells me stories when she isn’t able to yet. But in her own little way, she tells me what she wants, and I can only be thankful for that. I know her favorite songs, I know what she wants by a simple gesture and I know what makes her happy — you can’t beat that.

I wish I’d known three years ago when I left that office in tears that things would be OK, that the road will be long, that she would go through more than most people go through in a lifetime — but that our lives with a miracle would be pure joy, that I would be proud of all she has accomplished.

That day, I apologized for her diagnosis, I apologized for all the things she may or may not be able to accomplish on her own. Today, I just want to apologize for ever doubting her, because she isn’t defined by her trisomy 5q — she’s just who she was meant to be all along.

Happy three years of diagnosis, baby girl. My life is just way better with you in it. You’ve taught me way more than I ever thought you would. You’ve been my best teacher all along.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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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5 Things I’ve Learned Since My Daughter’s Juvenile Arthritis Diagnosis

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When my daughter was 18 months old, she became anemic and began having difficulty putting weight on her legs. She lost her appetite, she stopped growing, some of her joints were swollen and she fought off countless illnesses on top of having asthma. After a year and a half of doctors, tests, scans and blood work, she was diagnosed with juvenile idiopathic arthritis (JIA).

While we were relieved to finally have some answers, we also found ourselves overwhelmed with the diagnosis as well as trying to find the right dosage and combination of medication to fight this autoimmune disease. We are several years into it now, and every day is different. I feel it’s important to raise awareness for JIA, an “almost invisible illness” because the swelling usually occurs in the morning and at night. Not being able to see it makes it difficult for some to understand.

I’d like to help others who are going through similar journeys, so here’s what I’ve learned so far:

1. Live each moment. This is so much easier said than done, especially when my daughter is sick or going through a flare. There are times when she’s in so much pain she won’t even let me touch her. But there are also times I get to scoop her up and snuggle, and I savor those moments dearly. No feat for us is too small. I am grateful when she can just get out of bed by herself or play with her sister. People sometimes take these “small” things for granted, but we’ve learned to live each and every moment and be thankful for them all. A lot of people wonder if it’s something she will “grow out of,” and unfortunately that’s not the case. So we take each day at a time.   

2. Your priorities will change. Unfortunately, with an autoimmune disease, your immune system is low. Whenever we go out somewhere, she gets sick afterward almost every single time, even after taking precautions and getting clean clothes on immediately after we get home. And while most people can fight off an illness in three to five days, it takes her two weeks. So we’ve begun to change our priorities and how we think. For example, would we rather have her go grocery shopping with us, or save the outing for something she’ll actually enjoy?

3. You learn who your true friends are. With this disease, every day is different. Some mornings, she springs out of bed; other mornings, it takes her two hours. We sometimes have to cancel plans because of a flare. Some friends will understand these things, and some will not. You may even get the occasional comment along the lines of, “Your child always seems sick.” Another one we get a lot is, “But she looks fine right now.” It’s difficult to explain to someone without going into details. Yes, she may look fine right now, but it took an hour with the heating pad this morning just to get the swelling down enough for her to get out of bed, and there will be at least another hour tonight along with her crying because she’s in so much pain. Your real friends will listen to you when you explain these things and will understand when they come up.

4. It is an emotional roller coaster. Another mother whose child has JIA shared this with me when my daughter was first diagnosed. At the time, I didn’t understand it at all. I thought we had everything figured out with her meds and we were good to go. But boy, was she right! Just when you think you have it all figured out and things are going smoothly, new joints become affected, others stop responding to the medication or something else changes.

You’d think with every flare it would get easier, but it doesn’t. You go through all the emotions all over again — worry, anger, guilt — and that’s OK. Surround yourself with a good support system. If you want your child to learn how to express his or her feelings, don’t be afraid to show yours sometimes. It’s important they know it is OK to have feelings — it’s how you deal with and handle those feelings that matters.

5. This illness does not define us, but it does help shape us — whether we want it to or not. This is a big one. My other daughter has shown me this the most. At times, she feels guilty for getting to do things that her sister cannot. I struggle with this as an adult, but I can’t image how hard it would be to do as a child. But, with help from out support system, we’ve both grown so much. She shows empathy beyond her years and is always trying to help others. She has learned to include, accept and have patience. I’ve learned to have courage and to take each day at a time. I used to plan everything, be inflexible or ask “what if.” Not anymore. I enjoy the small victories and savor them for as long as I can.

As the years go on, I’m sure we’ll continue learning. In the meantime, I hope this can help some new families who may be going through a similar journey. I am so proud of both my girls and am so thankful for our constant support system through all of the ups and downs.

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The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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Johnson & Johnson Pulls Ads Following ‘The View’ Hosts’ Nursing Comments

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1507529_10151975024165951_3244925699037461320_o On Wednesday, Johnson & Johnson announced the company will be pausing its ads on “The View” following the daytime show’s co-hosts’ comments regarding Miss Colorado’s decision to discuss her nursing career as her talent in The Miss America Pageant.

In a statement on Facebook, Johnson & Johnson wrote:

Johnson & Johnson values and appreciates nurses and we respect the critical role they play in our healthcare system. We disagree with recent comments on daytime television about the nursing profession, and we have paused our advertising accordingly. We’re committed to raising the level of awareness about the skill and knowledge that the profession requires, and we send our thanks today and every day to the millions of nurses who touch the lives of patients and their families. #NursesHeal#NursesUnite

After “The View” co-hosts Joy Behar and Michelle Collins seemingly mocked contestant Kelley Johnson, who works with Alzheimer’s patients — even going as far as to question why Johnson wore a “doctor’s stethoscope.” Fellow nurses, patients, doctors and people from all over jumped to Johnson’s defense. Doctors like Mark Stanley posted photos of themselves draped in stethoscopes, making the point that nurses, too, use the medical device. Several parents spoke out, writing blog posts explaining to Behar and Collins just how valuable nurses are.

On Thursday, Johnson & Johnson also announced that the company will be putting the money saved from pausing its ads to good use:

For every eligible photo you post through our Donate A Photo app designating the Foundation of the National Student Nurses Association (FNSNA), Johnson & Johnson will donate $1 to provide scholarships for nursing students, up to $50,000. You can share one photo a day through the end of the year, so keep your photos coming!‪#‎nursesunite‬

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Model With Vitiligo Surprises 10-Year-Old Fan Who Has the Same Condition

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Winnie Harlow could be a role model for anyone who needs a lesson in confidence, but for 10-year-old April Star, she’s a particularly special influence.

Harlow and April both have a skin condition called vitiligo. Despite facing horrible bullying in high school, Harlow went on to find international modeling success and most recently appeared on the cover of Ebony magazine’s September issue.

On Thursday’s episode of “The Real,” April, an aspiring model, told the show’s co-hosts that the most confident person she knows on Instagram is Harlow. April keeps her own Instagram account called “redefinemybeauty,” where she shares photos of herself to inspire others to embrace their differences. Co-host Jeannie Mai then calls Harlow on speakerphone, but it turns out the superstar is actually backstage.

Below you can watch the tearjerking exchange that then ensued between Harlow and April.

“The confidence I have now, I had none of at her age,” Harlow says in the clip. “So when I see her all over the Internet and social media, I see the little girl that I wish I could have been.”

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The Reality of a Daughter Whose 61-Year-Old Mother Lives With Alzheimer’s

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I used to think I knew about Alzheimer’s disease. I thought it was a disease that strikes the elderly, a disease that may cause people to forget their names or their family members.

I saw “The Notebook.” I knew what Alzheimer’s was…

Until my mother started to display a number of worrying signs from around age 55. She started to forget basic instructions and denied knowing about certain functions at church or my dad’s work. That’s when I started to understand that what I thought was Alzheimer’s was just the tip of a large iceberg.

Denial was the first part of our reality. And it lasted close to five years. “It’s not Alzheimer’s!” we would say.

“It’s just normal aging and forgetfulness.”

“She’s much better today.”

“She still knows all our names.”

“She knows she forgets things; with Alzheimer’s ‘they’ don’t have a clue.”

Five years of bluffing, denial and trying to appear as normal as possible to the outside world. Few people had any clue about the daily struggles and worries. About trying to convince the world our mom was fine.

Until we couldn’t deny the reality of Alzheimer’s disease any longer…

When a lady who prides herself on her cooking can’t throw two ingredients together, or when a lady who could socialize with any person suddenly can’t string together two words with a friend — then you know things are not as fine as you want them to appear.

She received the dreaded diagnosis: early onset Alzheimer’s disease. Most likely familial. Another reality hit me then — I could carry the dreaded gene as well. Someday that could be my sisters or me.

Every day has its challenges. Days when Mom can’t remember her own children’s or husband’s names, or can’t dress herself at all.

And then she has other days where she seems like her “old” self, which is yet another reality of Alzheimer’s disease for us. You find yourself inadvertently comparing your loved one to the one you used to know. The “perfect” mom of old. “She’s still perfect,” you convince yourself, but in the darkest, most difficult moments, you cry out for the mom you used to know. The mom who could heal all ills and take away all woes.

Another reality is that she can become aggressive or afraid (or terrified). She can be fine one moment and paranoid the next. We haven’t had any major incidences of aggression or paranoia, but the signs are there. I believe it’s only a matter of time.

And even though you know you shouldn’t take things personally, even though you know she has no control over her reactions to you or her grandchildren, in your darkest moments you blame her. You blame her for hurting you, not physically, but emotionally (which I feel can be so much worse). You blame her for forgetting your name or for keeping you at a distance. It’s the disease’s fault. But at your worst, it seems so much easier to blame the person than an invisible disease. Blaming a sick person — that can be a reality of Alzheimer’s.

But beyond the forgetfulness, aggression and paranoia that starts to develop…

Beyond the odd behaviors and mood swings…

She is still just “Mom.”

She’s not a neurological condition. She’s not imperfect or broken. She is a mother and wife, a grandmother and rock. She is Mom, and we will always love her.

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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