A Letter to My Pregnant Self Before I Had a Child With a Disability

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Dear Very Pregnant Self,

I am writing to you from the years ahead because I have a few things that I need to say to you — a few things you need to hear. You may feel like this letter is shaking you by the shoulders, and that’s good, because Lord knows you won’t listen to anyone but yourself. In just a few short weeks, this seemingly endless period of your life will culminate in you bringing a beautiful baby girl into the world. Although, if I’m being honest, those weeks probably won’t seem very short to you either — sciatica, amiright?

Those doctors of yours have worked tirelessly to prepare you for what’s to come, but as it turns out, ultrasound is not a perfect science, and that baby is already throwing curve-balls that no one will see coming. No one can prepare you for what’s to come, including me, but what I am here to say is that you can do this. You will do this.

 

When that baby comes out, with her head all dented in and her heart failing (I did mention curve-balls, didn’t I?) a very large part of you will want to shut down — you will want to shut off your brain from the immense hurt and shut off your heart from everything around you, including that sweet baby. But don’t you dare. Do you hear me? You will sing to that baby through ugly tears and you will hope against hope that she clears every hurdle she comes up against, because that is what she deserves, and she is counting on you for it.

Because here’s the thing, I am looking at that baby right now as we get ready to celebrate her 3rd birthday. That’s right, she’s going to be 3! And she is absolutely magnificent. She has inherited your insatiable, obsessive love of books, has her dad’s completely ridiculous, class-clowny personality, and she has somehow managed to develop the stubbornness of both of you combined. Best of luck with that. She is, simultaneously, completely her own person. She has a smile that lights up a room and a laugh that lights up the world. There is no other sound like it, and if you want to hear that laugh, if you want to feel it fill you from the top of your head all the way down to your toes, you must believe that you can get through this.

I will not tell you that it won’t be hard. It will be impossibly hard. Your resolve will be tested to its absolute limits, and you will feel yourself crumble to pieces over and over again. But you will stick those pieces back together as best you can, and you will make it through another day. And another day. And another. I will not tell you that it will get easier. Though some things will get easier, some things will actually get harder. Handing your baby girl off to brain and heart surgeons after two and a half years of getting to love her will be harder than when she’s 3 months old. I want you to know this though — listen, because this part is important– there will be more good days than there are bad, there will be more laughter than there are tears, and there will be more joy than there is sorrow.

You will be transformed through this process. You will learn to stand up for that amazing little girl, and you will learn to stand up for yourself. Yes, you, who balks at the mere idea of confrontation, you will become a fierce advocate for your daughter. She will light a wildfire within you that even Smokey the Bear will stand back and admire. She will make you a more complete person.

One last bit of advice — you will need to take time for yourself. You will need to breathe. You will need to admit when things are too hard. As much as she needs you, you need her that much more. As much as she will break you, she will also be the one that fixes all of the broken bits of you. But, you can do this, and you will do this.

With much love and admiration,
Your Future Self

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What I Needed Most as a Child With Noonan Syndrome

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As humans, we have an innate desire to connect and build relationships. We relate ourselves to others and express ourselves so that people will have the ability to connect with us. So what happens when you can’t connect with anyone with one of the larger parts of your identity?

My mother was very open to me about my health when I was diagnosed with Noonan syndrome (NS) at the age of 5. Because of this, I was comfortable with the thought of having NS. It was all I had ever known. The discovery of me having NS was as traumatic as learning when my birthday was. Now, here’s the problem — I had nine friends who also had birthdays in June. But I didn’t have a single friend who also had at least five different medical specialists, or had to give themselves shots every day, had holes in their heart, or had a mutated chromosome. To tell you the truth, I didn’t think there was anyone else who had those things. I thought it was just me.

When I was 11 years old, my cardiologist suggested that I attend a camp for children and teenagers with congenital heart defects. Even though this was only a symptom of Noonan syndrome, it was a major part of it. Initially, I had no desire to go. By this time, I knew that there were other kids with unique hearts like mine. But 11-year-old me had concluded that they were all in wheelchairs living in the hospital. I wasn’t in a wheelchair, I wasn’t in the hospital. I liked to run and dance. So a camp full of hospitalized kids in wheelchairs didn’t sound like fun. But my cardiologist insisted that every one of his patients who had gone said it was their favorite week of the year. My mother signed me up, promising that I didn’t have to go if I still hated it after we went to the informational meeting.

At that meeting I discovered not only kids my age without wheelchairs, but also that not a single one of them lived in a hospital. I met kids who had been going to camp year after year, my cardiologist was right. I was convinced. I started packing that night for the camp that was a month away.

Over the next four years, I made some of my dearest friends to this day. I did not discover a group of sick kids who talked about their health issues at camp for a week. I discovered a community of kids who liked to dance, run, laugh and sing — with hearts just like mine.

We weren’t a bunch of sick kids at camp, we were kids who needed a friend just like us.

That group of kids (who are now all adults) taught me one of the greatest lessons in life. They taught me to laugh at myself. I learned that a medical condition doesn’t always have to be taken seriously. It can be joked about, a lot. We could laugh about weird things we’ve all dealt with, like sticker hickies from an EKG and the horrors of halter monitors.

As we got older, we stayed a community. We could pick each other back up when one wasn’t doing well. We provided company and laughter during hospital stays, we gave pep talks when one of us was bitter towards their illness, we continued to joke and laugh about the thing that brought us together.

So if your child has any sort of medical uniqueness, please do everything within your power to connect them with kids who are like them. As a parent, you must face the reality that you cannot teach your kid everything they need to know about their illness. Because frankly, you might never fully understand what it’s like to have that illness. So show them someone who does. Never underestimate a child’s ability to teach another child. Whether it’s through camps, playgroups, conventions, or even just a meet up, it’s worth giving it a shot. Give your child the opportunity to be understood.

two young boys laughing together

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What My Nephew's Rare Diagnosis Taught Me About Family

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“I’m pregnant.”

The words came without warning. She simply dropped them into a lull in the conversation as though she were making an everyday observation. She might have said it was supposed to rain the next morning. Her tone was light and perfectly calm, her expression serious.

I was stirring something in a pot on the stove, and I turned abruptly, my wooden spoon leaving a trail of liquid across the kitchen tile. I looked at my sister-in-law intently, searching for a hint of humor beneath the surface, a sign she was messing with us.

There was none.

“You’re… joking?” I asked, falteringly.

She shook her head.

Heather’s pregnancy came as a shock. She had thought her family was complete. But God – he was on another page. He had something special in mind for Heather, Jon and their two girls. Or rather, he had them in mind for someone else.

Seven months later, after months of morning sickness, a challenging bout with gestational diabetes and burgeoning worries when third trimester ultrasounds showed that Heather’s placenta was calcifying, Rhyse Addyson Cole entered the world. He came quickly, both during labor and at the end of it, his father catching him like a football as he exited the birth canal in a rush of life-giving fluid.

We went to the hospital the afternoon of his birth, the entire extended family crowding into Heather’s postpartum room, passing the newest member around like a shared treat. He was the tiniest baby I’d ever held, a mere five pounds, four ounces, with swirls of surprising red hair that led Heather to joke that maybe he was really the mailman’s son. Jon’s smile was the widest we’d ever seen it.

Rhyse charmed us all that first afternoon — his tiny, perfect face relaxed and calm, his eyes seeming to take the measure of each of us like a wise old soul. Both Eli and I snuggled him close and smiled at Heather’s hints to us that Rhyse needed a cousin close to his age. We had no idea that we were already pregnant. We drove home from the hospital feeling nothing more than a deep thankfulness that this longed-for and deeply loved little boy had safely arrived.

My phone rang just before 5 a.m. the next morning, pulling us from deep slumber. When I saw Jon’s name on the caller ID, I came fully awake with a jolt. Even before I answered, I knew there could be only one reason for Jon to call so early. Something had to be wrong with Heather or the baby.

The days and weeks that followed were filled with mystery as the doctors searched for an explanation for Rhyse’s unique medical state. A fearsome low blood platelet count spurred the hospital OB to rush Rhyse via ambulance to the nearest children’s hospital. Finally, after six weeks in the NICU that involved countless tests, numerous platelet transfusions and all kinds of other medical intercessions no infant should have to endure, Heather and Jon received a tentative diagnosis, one that would require further testing before it could be made formal. Rhyse had Noonan Syndrome.

Noonan Syndrome. None of us had ever heard of it. Heather and Jon had to educate themselves out of necessity, and they did their best to educate the rest of us in turn. In the end, all we could really be sure of was that nothing was certain. Noonans looks different on every child, and we had no idea how it was going to look on Rhyse.

It’s been over two years since Rhyse was diagnosed with Noonans, and it’s safe to say he’s become the light of our collective family life. He has proven himself hardier than any toughened adult, undergoing constant assessment and treatment for everything from feeding issues to breathing problems. He has a team of twelve specialists who are regularly reassessing his needs. He has a G-tube. He gets twice daily steroid shots to help him grow and will continue to do so until he’s 18 years old. He gets nightly breathing treatments and will soon have both his tonsils and adenoids removed in order to improve his ability to breathe while he’s lying down. But these medical pieces, while they are a big part of Rhyse’s life, do not define him. Far from it.

What does define him? The same things that define any 2-year-old. Bottomless curiosity. The desire to make his own place of significance within his family and his world. That unmistakable toddler mix of courage and timidity. The hunger to be heard, understood, respected and valued.

When we think of Rhyse, we don’t think of Noonan Syndrome. We think of our spunky red-headed nephew with the unshakable sense of humor. The one who loves and fights with his older sisters like any little brother. The one who loves to tease his daddy. The one who, in spite of delayed verbal development, communicates his needs, wants and feelings as clearly as can be. The one who loves cars and trucks as though it’s in his DNA. The one who is bright and intuitive and can read the atmosphere in a room as well as any psychologist. The one who wants, just like any other child, to be loved and snuggled and teased and talked to.

We live halfway across the country now, and most of our time together consists of sending each other videos or making time to Skype. When we do, we don’t see a sick child, or a struggling child, or an abnormal child. We see a happy, active little boy yelling and running and playing and just having a ball being alive. He and our daughter, Lili, who is 9 months younger, wave to each other gleefully across the miles, always excited to see each other, even if it’s only via a computer screen. Indeed, Lili’s favorite “TV show” is Rhyse’s YouTube channel.

 

And his parents? His sisters? No one, no one, could love Rhyse, could care for him, the way they do. Even at the end of a week wherein there have been gas bubbles in the G-tube and episodes of throwing up formula all over the minivan, hours spent in a specialist’s office that end in yet another tweak to the care plan, and midnight visits to the emergency room — even when it feels like there’s nothing more that could possibly go wrong, none of it can cancel out the love shared between the five of them.

Noonans doesn’t stop them from being a family who goes to the library and the bookstore and the zoo and the beach. A family with a swimming pool and a trampoline in the backyard. A family who goes on hikes and bikes rides and trips to the ice cream shop down the street.

It’s still not clear what Noonans will mean for Rhyse long term, what he’ll be able to do or be as an adult. What is clear, however, is that Rhyse is exactly where God meant for him to be – cradled in the bosom of a family that, while as imperfect as every other family, is perfect for him.

This post originally appeared on Team Noonan Blog.

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Dear Mom Dealing With Your Child's Special Needs Diagnosis

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I’ve been where you are, facing a scary unknown for my child. Nothing, nothing compares to the thick net of overpowering emotions that capture you as you deal with your child’s new diagnosis. Even if you suspected it.

Nichole-is-Born-017

I was pregnant with my youngest daughter when a level 2 ultrasound showed significant markers for Down syndrome. That happened a few days after I’d had a dream that my baby would be born with Down syndrome. We did not receive a definite diagnosis, but we knew it was a strong possibility. And yet, her birth is marred by the tears, the sadness, the anguish, the fear. Fear of the unknown.

What does her diagnosis mean to her? 
To our family? 
Will our family now be covered with limitations? 
How will this diagnosis affect sibling relationships? 
What will her future look like? 
What about mine? 
Will she live with us forever? 
Will she ever have a job? 
And why me?
Why me? 

There has to be a mistake, we cannot be one of those families that have kids with disabilities!

The pediatrician didn’t help. My midwife crying didn’t help. Hearing people say, “I’m sorry,” at least, to us, didn’t help. The message we seemed to hear from other people was, “This is bad, this is really, really bad.” And we had enough fear on our own, we didn’t need more fuel to the fire.

I don’t know the circumstances of how you found out about your child’s diagnosis, or if you are pregnant, if your child is an infant, a toddler, or a little older, but I suspect you might be wrestling with feelings and thoughts similar to mine. And it’s scary, it’s more than you can handle, it feels as if a vacuum sucked up all the happiness away from you. A nightmare becoming a reality.

I will not tell you that parenting a child with a special needs diagnosis is the same as parenting a typical child; it’s not. I won’t tell you that parenting a child with a special needs diagnosis is easy; it’s not (parenting never is). I won’t tell you that the challenges in raising a child with a disability are easy; they’re not. Parenting children with special needs does require a little more, and sometimes a lot more, depending on your child’s needs. But although this new life will be different, this is what I want you to know:

No doctor, no professional, no specialist can tell you what your everyday life will be like. Their expertise is limited to the medical field. Remember, a doctor sees the medical issues and emergencies, they only get to see a family in crisis or sickness or maintenance, they get to experience the worst case medical scenario. And while your child might face some medical issues now or in the future, your child is so much more than his/her medical diagnosis. Let me say that again, your child is so much more than his/her medical diagnosis.

Your child is, first of all, your child.
Your child will have gifts, 
talents, 
abilities, 
a sense of humor, 
a personality of their own, 
a favorite color, 
a love for certain type of music, 
a favorite toy. 
They will be a person, their very own person, just like you and just like me. 
An individual made up of so much more than a diagnosis.

I know the diagnosis feels so big right now, but it won’t always be that way. It will get better. You will peel the sadness away, layer by layer. The lost dreams will be replaced with new dreams. Yes, you will have new dreams for your child! Your child will open up a world to you that will surprise you, it will be better than you imagined it would be. Your child will enrich your life, and the life of his/her siblings too.

See, unless someone else has walked in your shoes, nobody can tell you about 
the smiles, 
the celebration, 
the joy, 
the abundance of love. 
But I’ve been where you are, 
and I can tell you the light will come, 
joy will show up, 
love will take over. 
This fierce, deep, strong love.

Besides, nobody can tell you what your child’s sense of humor will be, or how his laugh will be deep and strong and make you laugh too.

Before my daughter was born, I really didn’t know much about Down syndrome, but the truth is I really didn’t know much about her either. I didn’t know that she would love to get in bed with me on Saturday mornings as we sip decaf coffee together. I didn’t know that she would love to dance to classical music. I didn’t know that she would fill my love tank with her hugs and love. I didn’t know that she would surprise her classmates in kindergarten by reading their names. I didn’t know that she would teach us what celebration feels and looks like. Before her, I didn’t know that life could be so full. She changed me.

And I want to leave you with a sentiment that has become dear to me, because I have found this to be true in the special needs journey… And you will, too, my friend.

You will experience shades of color that you never knew were possible.

This post originally appeared on EllenStumbo.com.
You can also read it on DifferentDream.com.

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The Parenting Advice That Keeps Me Moving On When Life Gets Hectic

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“While truckin’ down the road of life, although all hope seems gone,
I just move on.


When I can’t find a single star to hang my wish upon, I just move on,
I move on.” 

Doesn’t it always go back to a good old fashioned show tune? Well, it does for me anyway. This one is from “Chicago.” Great soundtrack, by the way.

This is also one of my theme songs of autism. I’m not kidding. I have a whole playlist of tunes. I’m usually listening to them to maintain my sanity in a noisy therapy waiting room, cleaning the umpteenth stain my kiddo has caused or just taking a time out from him and his verbal scripting. Sensory breaks: not just for our kids.

There are so many feelings that are constantly coming at me with all this autism stuff. It’s a roller coaster, and I tend to avoid those if given the choice. I’m more of a sitting-in-an-inner-tube-floating-down-a-lazy-river kind of gal. Autism is all, “Yeah, don’t think so, girl. Let’s go!” Sometimes this is a good thing though because I can’t just dwell in my pity party for one. My kiddo’s needs just don’t afford me that kind of self indulgent time. I have to make appointments with myself for when I can be in a funk. That’s OK. I’ll just add a frowny face to my visual schedule when I get a moment.

I want to share with those who may need to read this some valuable advice I got from a friend of mine:

Feelings are information. Not instructions. 

Feelings are valid. Your feelings do not outrank mine. It’s OK to feel how you feel. It’s okay to feel like you just want to run away. Just don’t run away. You have a lot of work to do. Plus, your kid will just find you. My kiddo knows all my hiding spots now. It was a bummer day when he figured out Mama Fry hides in the laundry room “doing the wash” when she just needs a few moments with herself and a People Magazine. As frustrated as I get that my son tries to follow me into the bathroom to secure a front row seat to watch me attend to a tampon changing, I take a breath and gently remind him through gritted teeth that I need privacy. I allow myself to feel annoyed, and then I move on. So does he.

The feelings may confuse us both at times, but we move on. There’s no alternative. No calling a temp agency for another mom to fill in. No switch on his autism. We move on. Even when the day feels like all the other ones before it — and it often does — we move on. Our kids aren’t the only ones that have trouble with putting a name to the feeling. I know I often mistake frustration with anger and you know what? I don’t beat myself over that. I just take a breath and move on. The moment I realized that I struggle with my emotions just as much as he does was pretty freeing. I can feel the things, but it doesn’t mean I’m going to act on them.

Summertime regression and behaviors everywhere — i’s not fun, but we’ll deal with it. I feel like I’ve been walking on eggshells all week with the kiddo, but at least I’m still moving on .

Now I’m going to move on over to the couch and the latest episode of “Project Runway” and chill out for a while.

This post originally appeared on Autism With a Side of Fries.

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Learning to Resist My 'Inner Angry Cripple'

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I’ve been something of a “fan girl” of Maysoon Zayid’s since watching her TED Talk earlier this year, so you can just imagine how surprised I was when I noticed she noticed one of my tweets & then replied to a direct message (or 10).

One of her direct messages has stuck with me: “Say no to angry cripple face.”

Typically the word “cripple” sits on my last nerve longer and harder than “the r-word” ever could. This time was different; yes, it was coming from one of my peers (which always helps), but I realized she’s onto something.

I think most (if not all) individuals with a disability have “an inner angry cripple,” like people have an inner child; however, some people are better at controlling (or resisting) their inner angry cripple than others.

I myself have an inner angry cripple who I often have to keep at bay — especially when various news items end up in my eye line that I happen to disagree with.

There’s a picture floating around the interwebs that says, “I’m Italian I don’t have an inside voice.”

An uncontrolled inner cripple is the same way. It won’t shut up, unless you shut it up.

I’m not sure when it starts for people. All I can tell you is that I have no idea when it started for me, but I have a feeling that it’s just getting started. Something tells me it starts around the time you get shoved around one too many times, and no one else seems to give a crap.

There seems to be an ongoing conversation within the disability community of “how much is too much?”

This same question applies to advocacy and activism.

How much is too much?

I’m learning that the saying, “He who screams loudest wins” isn’t the best route (no matter what the inner angry cripple says). There are times when it is called for and it can be very effective, but it’s hardly a long term plan for successful advocacy.

One of the most frustrating things about the disability community is that we’re painted with a broad brush by “outsiders.” If someone has a negative interaction with someone with a disability then the first someone will often carry that over to the next person with a disability who they meet, even though it’s two separate people.

What I say has an effect on the next person. What someone said before will affect me.

It makes no sense and a lot of sense all at once.

It’s not fair, but it’s reality.

For this reason my biggest obstacle in having an impact is myself and my inner angry cripple.

I’d venture to guess it’s the same for a lot of people.

The inner angry cripple has its place in my head (and any advocates). It’s the engine that drives the train. However resisting the inner angry cripple and its first instincts are important.

Yelling at every person whose done wrong may feel good, at first, but it won’t really make the same impact as a sane rational discussion will.

I will resist my inner angry cripple and her urge to jump out and play at every available opportunity.

Do you resist yours? If you don’t, will you try?

This post originally appeared on standup8.wordpress.com.

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