There Is So Much I Don’t Know

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I ran into a momma the other day that I hadn’t seen in years.

She knew us before.

She had absolutely no idea what our life looks these days, had no idea about my son’s diagnosis or any of the realities associated with it – she had no idea at all.

She told a sweet story about my son, I smiled and thanked her for always being so kind, and it was genuinely good to see her.

But when I left and headed home, back to my son and back to our new normal, I could feel waves of grief starting to wash over me. I pushed them back, determined not to cry in front of my son, determined to get dinner made as planned, determined to shake off the sinking feeling.

I made it to bed time.

As soon as my youngest was in the bath and jabbering to my husband about Minecraft, I rushed into my bedroom and locked the door as the tears started to flow.

I was so, so sad. The truth is, I miss the little boy my friend described. I miss that he used to be so much more capable, not only socially but also physically. I miss not worrying so much about his future. I miss not worrying so much about his present. But mostly, I miss the little boy who sometimes seems to have just slipped away from me.

I went into the bathroom to wash my face, pray and try to get myself together. For the first time in a long time, I just couldn’t do it. I couldn’t stop the sobs welling up from a place in my heart that carries a dull ache mixed with hope in it all the time. I was completely overtaken and undone.

I curled up into a ball on the floor and just let the pain come. I realized, there on the cold floor, that when the sorrow comes now, it is also always mixed with something else – acceptance.  When the hurt is so deep I feel like I can’t breathe, it is also always met with a renewed gratitude – “At least now we know, now we can help, now he can just be the way he is meant to be.”

My son is headed to the hospital this week for testing. I am not sure what we will find. I am not sure if I will be told I am overreacting and too protective (because we know that happens, even when something is really wrong), or if I will be told he has a life-altering condition that will further complicate how he lives and how we function (his doctors have already said we are headed for this, but somehow, it feels slippery – without the actual diagnosis, on paper, I just can’t fully bring myself to go there).

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There is so much I don’t know.

But what I do know is this – one day, long after this appointment has come and gone, I may look back on this time frame and miss it (just like the longing I felt lying on the bathroom floor the other night). Because although the waiting and the wondering is tough, sometimes not knowing is easier. Not knowing means you can keep holding the picture in your head about how you want it to be. Not knowing means you can still imagine all the other possible causes, the easier ones, the ones that won’t potentially cut my child’s life short. You can create an endless stream of medical interventions.

There is so much I don’t know.

But what I do know is this – God has this child, lovingly in the palm of his hand. I have seen it, felt it, witnessed it, and experienced it over and over again. Whatever is next for my son will not change that. If anything, whatever is next will bring more and more glimpses of radical grace and crazy love. I know this – all the way down to my toes, I know this.

There is so much I don’t know.

But what I do know is this – my son is amazing. He is wicked smart and so funny. He is affectionate and caring. Nothing the doctors will say, nothing that is prescribed for treatment, nothing that is written down in the chart will change my son’s ability to make his brother laugh, or make my husband smile, or make my heart burst with affection for him.

And this knowing matters more than any diagnosis. This knowing makes up the fabric of our everyday, and gives me the strength to take the next step, and the next, and the next.

This knowing means I can fill out the endless paperwork tonight and not worry about the amount our insurance will or will not cover.

This knowing means I can go lie down with my son right now and listen, really listen to all things salt water aquarium. It means I will smile and genuinely enjoy the time with him.

This knowing means we will be fine this week – no matter what, we will do this and we will do this well.

This knowing is what makes me his momma.

This post originally appeared on Not the Former Things.

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How We Prepared Our Daughters for Their Baby Sister’s Risky Surgery

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74727_2852121116907_768508602_n My wife remembers it all better than I do, and she could tell you about how all it went. The conversation we had with the girls. The Talk.

We’d spoken about Lucy’s surgery at different times with her sisters, usually at bedtime — after storytime and tickletime and joketime and that weird interlude of pell-mell delirium that spikes just before lights out. We never tried to avoid the subject, but we didn’t want it controlling us either. And when it came up, whenever the girls asked about it, it was always in soft and quiet tones we made sure spun seamlessly into prayer.

Missus and I were making small mention of it at different times, gauging one another for the necessity of a talk, sort of realizing we couldn’t feel quite certain we’d adequately prepared Lucy’s sisters for the possibilities of less than perfect outcomes. We were feeling, ultimately, that it would be unfair to them not to. So we engineered a two-part plan, and Part 1 would be The Talk. It would be naturally thorny and unpleasant, but then we’d move quickly on to Part 2: Having an awesome weekend. And we did.

We wanted to do lots of fun stuff together so if the worse happened, the girls would one day have some more fun memories of us as a family of five. We didn’t do anything out-of-the way amazing. We just decided it’d be an anything-goes kind of weekend. Whatever anybody wants to do.  Somebody mentioned bowling. We went bowling. Out to lunch. Many games of Twister. Dance parties. We considered a movie, but there wasn’t a thing playing, so instead we had dinner in the living room watching movies, like the girls love to do.

There were photo shoots. Lots of photo shoots: Lucy in cute costumes, all the girls together in pretty dresses, indoors and out. Lots of treats. If we went to Starbucks, they each got their own small no-coffee Frappuccino instead of one to share. There was at least one Sonic run for cherry Dr. Pepper and root beer or maybe slushes. Sometimes we get the cheese tots.

We did it after school on a Friday, the day after the pre-op appointment. One of those cool, early autumn afternoons. The air soft and mosquito-less. The sky a cavernous blue, striking against the grass, lush for that time of year. I did most of the talking while Missus held Lucy sitting in a white plastic adirondack chair. She had our oldest on her lap also, her head laying back near her mommy’s shoulder. Our middle daughter mostly doddled around us, seeming not too attentive but with one ear on the conversation always. She would chirp up occasionally for earnest clarification and pop over for hugs, but wasn’t letting things distract her too much.

Missus would come behind me occasionally and smooth out the rough parts of my explanations, fill in gaps. In this way we tried to tiptoe the nebulous line between frankness and quiet optimism. Still, our oldest cried some. And then Missus cried some. Our middle one was soon there with more hugs. I can’t explain the look that passed over her when she saw her mother’s tears. It was like she was seeing for the first time something she was certain didn’t exist. A live unicorn, perhaps , right there before her eyes.

What words were actually used it’s hard to say now, two years later. We just explained that the kind of surgery Lucy needed was a serious surgery, a very serious surgery, and that the doctor would be trying to fix the most important part of a person’s body — something that’s hard to do.  Especially hard because it’s so small in babies.

the Pruitts We told them the good news was that doctors had gotten good at doing this and almost always they get it perfect or almost perfect. And if they get it perfect or almost perfect, then Lucy gets to come home and live a good life in a good house with a great backyard with her awesome sisters and parents and with our whole good and loving family.

But we also told them that because it’s so hard to do this kind of surgery, sometimes things don’t go perfect. And if they don’t go perfect, instead of coming home to live with us, Lucy could go instead to live with God, if He thinks that it would be better for her. And we would all be sad about that because we all want Lucy to come home and live with us. And we would miss her, always, and it would be hard for a time. But if that happened, we explained, then we would all have to accept God’s decision. Because truly, if God chooses to have Lucy with Him in heaven, well, then we believe Lucy wins. Lucy wins either way.

This post is part of Greg Pruitt’s memoir-in-progress, On Loving Lucy.

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What to Say (and Not Say) to Someone With Cancer

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One of my best friend‘s dad died just before Christmas. She called, and I met her at the hospital almost instantly. It was the same emergency room I went to to say goodbye to my mom. Not only had I been in her shoes, but I grew up with this family. They are family. The thing is — I still didn’t know what to say. I know, from experience, that they will likely not remember what I did or didn’t say, but that night, in raw shock and grief, my friend looked to me for some guidance. “What do I do now?” she asked.

At their house, at the funeral, over the phone, and even now, I struggled to find the words. I settled with a hug and different variations of “I’m so sorry” and “I love you,” knowing there are no right words.

When I was diagnosed with cancer in April, I saw this same struggle come over people. They didn’t know what to say to me. And with every hurdle I faced, there was a new crop of solemnity in the eyes of those surrounding me. People just didn’t know what to say.

Truthfully, there’s almost nothing worse than silence, but in the case that someone said “the wrong thing,” it never really bothered me. I’m not easily offended, and I realize the difficulty of the situation. I understand that saying anything at all is akin to saying, “Hey, I care,” so I honestly appreciated everything anyone said to me. You guys really pulled me through with love and grace.

With a few exceptions.

There are really some things you just shouldn’t say to someone with cancer, and I’m here to help. (If you said any of these things to me, don’t worry, we’re cool. Just, you know, maybe hold it back next time you’re trying to think of something to say in the face of something as awful as cancer.) It’s a short list (only two things), but here we go.

“But you could get hit by a car tomorrow.”

No. Just no. My husband actually said this to me the other day when I was talking about my fear of dying from this horrible, awful disease (which spawned this whole post!), but he’s not the only person who has used this line.

The problem? It dismisses the fear. The valid, legitimate fear that cancer does and can kill.

Also, do you see a car trailing behind me? Because I actually have mutinous, killer cancer cells in my body trying to take me down. Until there’s a car gunning for me full-speed, just no. It’s not the same thing.

“My aunt/sister/boss/mom died of breast cancer.”

Oh, how nice. Let’s talk about how slow and painful it was, too.

The only time you should say this to someone is if they’re your mortal enemy. Like, if you hate someone — really hate someone — and they are diagnosed with cancer, then you could probably give them a whole list of people you knew who died of that type of cancer and consider yourself one up. In that case, however, you are a ginormous ass.

Honestly, when anyone said this to me, I knew they were just trying to relate with me. I knew they were *trying* to say, “Hey, I’ve seen breast cancer, and I understand. I know it’s tough, I know it’s scary, and I know what you’re facing in the days ahead.”

But you really should just hold that little nugget inside unless you want to make my day worse. Because it always did. Hearing of someone who died of breast cancer, especially in the early days of diagnosis, was panic inducing. I can handle it much better now, but let’s be honest, I am now also taking anti-depressant and anti-anxiety meds at bedtime. So bring it on; I’m covered! Just kidding. I still don’t like to hear about it.

On the flip side, if you know of someone who was diagnosed with breast cancer and is, like, 20 plus years out, feel free to mention that. Those stories I welcomed with warm hugs. But don’t expect me to go too crazy. In 20 years, I’ll only be 53.

There are also things that people wouldn’t say that I wished someone would have.

Like, “Wow, Heather, you look like shit. Chemo must be a real bitch.”

Everyone was so quick to say how good I looked, considering (and they usually left off the “considering” part). Now, I know darn well that I didn’t look good — bags under my eyelash-free eyes, a bald head and a partial grimace on my face — and I didn’t feel good. I also know that people were just trying to throw me a bone, but if someone would have just conceded that I looked pretty awful, I would have been all like, “I know, right? Thank you! I feel pretty awful, and this cancer is really taking me down a notch.” Validation.

Be careful with this one, though. First, I’m not sure that every cancer patient feels the same way, and second, not just anyone can get away with it. There are definite rules.

If it looks like I tried at all to throw myself together, wait until next time. Signs that I tried to put myself together whilst in chemo: a wig, anything other than pajama pants, chapstick.

Also, you must be in the inner circle to say it. I figure there are about 25 people in my life who I would have welcomed such a comment from. Brothers, cousins, best friends. You should know if you’re in someone’s inner circle. If you’re not sure, just don’t. When I went back to work, someone once commented on my weight. Not cool. If you aren’t in the inner circle, keep the compliments flowing. My self esteem has just taken a huge hit.

If my brother/cousin/best friend had walked through the door, dinner in hand, and said, “Damn, Heather, you look like hell. How you feeling?” I would have laughed and loved it because someone has to keep it real. It gets pretty old hearing how great you look bald and how lucky you are not to have a misshapen head when all you want is your long, lovely, feminine hair back.

Keeping it real is what I craved a lot of the time. Which is why I often enjoyed the company of children. They don’t always know not to keep it real. My friend’s son showed no signs of hesitation at commenting on my bald head with a “Why aren’t you wearing your wig?” My niece, Abbi, is one of the only people who talked with me about the possibility of my death, and she’s 7.

She spent the night at our house mid-chemo, and upon seeing my bald head for the first time, I saw her thoughtful face, and said, “The medicine I take made it fall out, but it will grow back.”

“I know. My dad told me,” she said and sat for a moment, never looking away from me. “I know that you could die from cancer.”

“Yes, I could. I really could… but I don’t think I will.”

“Me neither.”

I can’t tell you how good that exchange was for my soul. Someone said it. Someone finally said it. My doctor never even said it. She gave me odds, numbers, but no one says things like, “You could die,” even though it’s true. And it’s so good to hear someone else say what you know and everyone else wants to gloss over.

Just don’t say nothing. Don’t drop out of someone’s life because you don’t know what to say or how to approach them. Because that is the very worst. Truly, with the exception of the aforementioned phrases, there are no wrong words. As long as you approach someone with love, they feel it. And if you really are at a loss for what to say, just remember not to be afraid of whatever it is that is going on. No one once reminded me that I had cancer; it never left my mind. No one made my day worse simply by bringing it up; I always appreciated the support. If words still fail you, go in for the hug and mean business.

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This post originally appeared on Invasive Duct Tales.

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Why We’ll Never Stop Going Out in Public

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I frequently see posts and articles about public outing nightmares with children with autism. I relate to almost every single one of them.

I’ve noticed that most of them aren’t about a meltdown at Disney World; it’s almost always the grocery store or some other mundane outing. An outing you can’t avoid. We all have to buy groceries. We all have to drop our children off at school. We all have to go to medical appointments. The list goes on and on. Lining up childcare every time we have to do one of these things just isn’t realistic and can get expensive. Not only that, but some of our children have such severe separation anxiety that leaving them with someone is equally as traumatic as an outing.

Anytime we go into a store, our son gets highly anxious about the loudspeaker and the beeping at the registers — so much so that he usually throws things when it’s time to check out or covers his ears and cries when they use the loudspeaker. He also gets upset if there’s another child crying (even if that child is three aisles over), and it can send him into a tailspin from which we cannot always recover.

People outside our world might wonder why we ever go out with our children if it isn’t completely necessary. Why do we subject ourselves to the stares and comments that cut so deep? Why don’t we, for instance, leave our son at home with one parent and the other parent can take out the other two? Why don’t I always do my grocery shopping while all three children are at preschool? Why do we attempt the park when we know the end result will probably be dragging a kicking and screaming child to the car?

I know our son would be perfectly content to sit in the living room and play with all of his favorite toys over and over again. His anxiety would be next to nothing, and his overall mood would improve. When we were home sick last week with few outings and next to no transitions, our days were nearly meltdown-free. So why don’t we homeschool, get a sitter for all our necessary outings and stop all our therapies?

First of all, staying shut away is not an option in the real world. If we expect our children to mature and learn coping mechanisms, they need to practice. If we expect them to go to the grocery store and buy food for themselves someday, we cannot avoid noisy places all together. We have to work through the experience, even if it does appear to be disastrous to onlookers. Sometimes our outings might look like disasters but were actually ten times better than the last one, and we bask in the joy of that progress.

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Our children (both our neurotypical children and our son on the spectrum) deserve to have fun too. Don’t get me wrong, we plan our outings carefully and generally try to work them so we don’t have much waiting. We try to make it as predictable as possible. But even so, we cannot plan for every circumstance, and if we have to wait a little longer than planned or go a different direction, you might have to witness a meltdown.

But it’s worth it. It’s worth it, to me, to risk him crying and screaming because we’re leaving the zoo after we’ve already walked through it twice, if the benefit means watching him jump up and down with excitement at experiencing a new animal. It’s worth it, to me, to get out of our house and see him have a better store outing than the last time or to see him try a new thing with his siblings by his side and enjoy it.

So there you have it. We cannot live in fear of the next meltdown; our children would never experience the world. We cannot hide our children to make the world feel more comfortable; no one will ever learn about or accept their differences. We cannot stop going out anymore than we can stop living. And we will never stop.

This post originally appeared on From the Bowels of Motherhood.

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Why I Don’t Care If You Love or Hate Jenny McCarthy

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rebecca When my son was diagnosed, I knew little about autism. I knew the autism markers — doesn’t answer to his name, doesn’t point, doesn’t babble, loss of skills, poor eye contact. You know the list. I knew those things because he presented 90 percent of them. By the time the diagnosis came, I knew it was probably autism but had no clue what that diagnosis really meant.

I remember the developmental pediatrician saying, “You were right, Mom. He is somewhere on the autism spectrum.” She didn’t look up much, wrote a lot and almost as quickly as the appointment started, it was over. She gave me a results print out, a parent disclosure of all the testing and evaluations, and that was about it. She sucked all the air out of the room, and then poof — she was gone.

I’ll skip over the hyperventilating and crying that happened in the parking garage — me outside the car, him inside, blissfully unaware of my complete devastation. Yes, initially, I was broken over autism. I had no idea what I was going to do with this child. No direction and the worst images in my head. My depression was intense, and I felt so lost. I knew I couldn’t stay there. As a friend said the other night, “I couldn’t unpack in the grief stage.”

Instead, I went to the university. Meaning, I went to Google. I googled a cure for autism. “I have to help him,” I thought, “I have to cure him. I can’t just let him slip away from me. This kid is my heartbeat. He’s everything good, my whole life. I can’t just let this happen.” Of course Jenny McCarthy popped up. Of course she did. While many people in this community hate her, I don’t. I don’t hate anyone. While I don’t agree with everything she supports, says and does, I learned about diet intervention, the beginning of gut health and some other useful things from her. In the beginning, I was glad to find her.

As we moved through the early years of our journey, I researched a lot more. I spent hours reading, deciding, comparing and rethinking. I was extensive in my research, and I implemented interventions I felt would be beneficial for my son. He went gluten-free, casein-free, soy-free and eventually grain-free. We added vitamins, minerals, probiotics and fish oil. Natural things to improve his health. We saw improvements, and if we didn’t — we discontinued the intervention. Fairly quickly, I moved away from the idea of “I have to cure him.” For me, it wasn’t about a cure anymore. It was about health, quality of life, happiness and enjoying the journey.

It was a time of growth, not only for him but for me. I learned to accept a lot — from him, from myself, from this community. The community taught me lessons you can only learn the hard way. In turn, I tried to become a member of the autism community I wanted to meet. Why? Because it’s important, needed, and while we don’t have to agree, we can be a supportive community.

So, when I say gluten-free/casein-free improved my autistic son’s health — I’m not saying it’s for all people with autism. It works for my kid.

When I speak about vaccines, I’m not advocating for or against vaccinations. I’m telling you my personal experience with them.

When I speak about applied behavioral analysis (ABA), it doesn’t mean I’m only about curbing behaviors. It means done intelligently, compassionately and with a full team, I’ve seen it help some children with autism. I respect my son, his feelings, his needs.

So many issues become a battle zone for parents. It doesn’t have to be that way. I can respect you without agreeing with you. Compassion for one another, empathy and support without harsh judgment are some of the most important things we can give to one another. Every journey is different and requires a different approach. While our journey and views may be on opposite ends of the spectrum, we’re still part of this community — the autism community.

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To the Paramedic Who Said the Right Thing When My Son Had a Seizure

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In 2010, I gave birth to a healthy baby boy. Although I’d suffered some complications during pregnancy, I was thrilled when I delivered my beautiful son that autumn evening nearly five years ago. I became a stay-at-home mom shortly after he was born. Our adventures began. I was a typical new mom. I had many of the same fears and insecurities I often hear other moms talk about. I was no different, and somehow that knowledge gave me peace on days when I’d feel overwhelmed or tired.

Although we live in the same city as my mom, I became reclusive with my new baby and found that I began to isolate myself. But I loved the alone time I had with my brand new son. Watching him grow and develop gave me a thrill I’d never experienced. I’d look at him in awe because I couldn’t believe I was his mom. How did I get so lucky? This went on a few months until I realized my son needed to interact more with people and other kids, not just his mom and dad.

When he was a year old, we started joining groups and making weekly visits to my mom’s. One morning on a visit to his “yia-yia,” I noticed he wasn’t feeling well. He had a runny nose. He seemed not himself. After registering a fever, I gave him fever reducer. As I began to pack up his things to go back home and as my mom carried him, I noticed he had an odd look in his eyes. His body grew limp, and he started convulsing in my mother’s arms. I grabbed my son and cradled him, trying to get him to react. We called 911, and I remember instinctively praying the over and over in the loudest voice I could muster as we waited for the ambulance to arrive. I needed God to hear my plea to not take my son.

I don’t know how much time passed; it probably wasn’t very long. The ambulance arrived with three paramedics. By that point, my son had started to come back to me. The older paramedic seemed to have the most experience, and after examining my son, he confidently told me he thought my son had experienced a febrile seizure and he’d most likely experience it again. All this information was new to me. Not only had I just witnessed my son endure a terrifying experience, but I was left feeling so unsure and fearful about what else to expect. I stared at the paramedic as he explained to me how many times he’d seen other babies go through this, and how there’s nothing to be afraid of; he barely finished his words when I began to sob. It was the sort of heartache and pain that releases what seems like every teardrop your body has. I somehow felt like I’d failed my son for allowing the seizure to invade his body.

I remember the paramedic extended his arms to me and gave me a hug as he told me, “You did everything right. Your son is going to be fine. You don’t need to be afraid.”

At that moment, those words were all I needed. My son would go on to experience countless seizures in the course of the next year of his life. When he turned 2, they disappeared just as quickly as they’d come. Now, three years later, my son is healthy and thriving.

I didn’t get that paramedic’s name, but I still remember his words. They come in handy, and I apply them on those days when I don’t feel like a good enough mom.

You did everything right. Your son is going to be fine. You don’t need to be afraid.

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For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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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