Category Archives: Family

Finding Answers we’d Rather Not – Seizures

Logan SleepingIn the silence

I crept in the kids’ bedroom earlier today where Logan was sleeping, after collapsing in fatigue late this morning.

I found him in two ways; as a vision with his pale sheeks and dark lashes creating a picture of innocence that was overwhelming in its intensity; and seizing, his left arm a moving target, disconcernable by the constant, rhythmic beat of his little hand against the Spongebob blanket.

In the same way that I sometimes hate this monster called autism, I am equally captivated and appalled by the beast, epilepsy.

In the back of my mind, the duality of the scene that had greeted me won’t let go. Continue reading

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Filed under Autism, Family, Logan, Parenting, Seizures, Special Needs

Help! Solving the Puzzle of Our Non-Verbal Child

Have you been here?

We typically deal with short bursts of Logan angst and anger.

Inability to communicate, combined with frustration and not understanding the world around him, mean that Logan, non-verbal and autistic, will sometimes hurt himself or others, destroy furniture or otherwise rage against the world.

The thing is, yes, Logan does this. Sometimes. But Logan is also highly distractable. I like to call it the gift and curse of a short attention span. The specialist has called it a complete lack of impulse control because of the damage to his frontal lobe. Whatever the case may be, his tantrums usually run to a fast and furious conclusion.

Lately, though, it seems to be getting harder and harder to redirect him, distract him, otherwise pull him from wherever this place in his head is. We’re running out of options, and today we ran out of ideas, steam, and for a while there, a bit of my optimistic personality. Continue reading

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Filed under Autism, Family, Logan, Parenting, Special Needs, venting

You Don’t have to be Perfect

Writer’s Note: this post talks freely about my Christian faith, of which I am proud. I understand that you might not share my faith, so please don’t take this as a ‘call’ to evangelize. This is, instead, a hard look at what being a special needs parent does deep inside, when we can’t let go of the mistakes we’ve made in life.  –Katrina

Kat's Curiosity - A Look at FaithFaith in Our Parenting

This isn’t a kind of faith that comes easy when you have kids with special needs.

Our worlds are filled with so many doubts and what-ifs already, that in the face of a new diagnosis, or even an older one, we sometimes feel like we made too many mistakes. We hurt, deep inside, because of pain we inflict on ourselves.

I’m not a therapist; I’m just a mom. While it’s hard to sometimes step above the ease of self-recrimination, it has to happen to move forward, to be the strong parent your kids need. One of the hardest things I had to do as I made peace with one diagnosis or another over the years was remind myself that  I am not perfect. I am only human. I will try my hardest, fight with passion and vigor for these very unique little guys. But sometimes I will make mistakes along the way.

  • Sometimes I will yell after a long day and one too many questions.
  • Sometimes I will look away instead of engage my child in the world around them, especially when my repeated efforts don’t always show the results I want, or I need.
  • Sometimes I will feel overwhelmed. Frightened.
  • Occasionally, I will feel my kids don’t need me, that I am not good enough or wise enough to be what they need.
  • Sometimes I will cry. And I will break.

I should stress, this is an ongoing process. Becoming a special needs parent is one of the few things that occurs in one split second, forever changes who you are as a person and who you will become, and takes a lifetime to master.

Not always, but sometimes, I resent God. Usually I am in awe of these little boys and so grateful to have them with me, to have been entrusted to raise and protect them.

Sometimes, in the dead of night after a day filled with one too many seizures, when one of my guys questions this world of strangers who would rather ignore them than interact with them, or when the next diagnosis is one too many.

Sometimes, I am overwhelmed. I am shamed. Guilty. Convinced that feeling this way somehow mitigates the years I have spent championing for these guys, facing those seizures, giving my youngest CPR, or otherwise being there for them.

It doesn’t.

But I’m human. I make mistakes and I misunderstand and I feel–in a world better suited to someone who isn’t already a little bruised from a life well-lived.

In these moment, I turn to my faith. Not in myself, because I will never be perfect, or good enough. I will always find fault with myself and my parenting. My faith, instead comes from my deeper faith, the relationship I have with God. I realize that this is the moment I lose some of you. You don’t believe in God. He let you down. He let this happen.

What strengthens me–because I think the same thoughts sometimes–but what strengthens me, is that His shoulders are broad enough to be weighed down with my pain, my anger, my lack of faith, even. I’m not asking you to share my faith. I understand this is beyond many of you, either because of the weight of living or for other, perhaps more personal, reasons.

But this is a post about me. And sometimes, I need to remind myself why I have the faith I do. Why my faith has been my constant companion during the valleys, and during the celebrations. I won’t ask you to share my faith, but I hope you would understand what it means to me.

One of my favorite new bands, Tenth Avenue North, released a song recently called You Are More and I consider, as I listen, that the lists of all the mistakes people have made is populated by all the mistakes I have made, real and imagined. I invite you to share the video with me, since they have offered it freely on YouTube.

Take a moment for yourself today, and remind yourself, that you are more than the total of your past mistakes. Share my faith or don’t, but please don’t stay steeped in a past you can’t change.

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Filed under Celebrations, Family, Parenting, Questioning, Special Needs

IEP: And the Winner is … Andy!

Some Good News (is always welcome)

Today was the the ACR (annual case review) for Andy’s IEP (Individualized Education Plan).  In the past such meetings have been stressful, as you can imagine it would be.

Andy (and Bobby)

From Disney vacation, Andy looks serious at the camera (while Bobby looks on!)

We had a little glimpse of the trepidation that comes with preparing to send a child to the middle school setting–and don’t watch as I tear up over that milestone alone.

This meeting, though, was more of a celebration of sorts.

Andy, who last year was just starting to read, with much help and frustration, is today reading at a fourth-grade reading level. In less than a year he jumped more than two grade levels (almost three!), to become the proud Diary of a Wimpy Kid aficionado he is today. Two years ago, this red-haired charmer of a serious, quirky, kid was barely reading at all.

He jumped forward in math and other areas as well.

Despite his success, we treated the discussion of his placement next year with kid gloves, because this little guy who love Greg Hefley and all things Wimpy Kid related is the same kid who obsessively worries that he is doing, has done, will do something, anything wrong. His anxiety places him in a fragile emotional state, and prompted his teacher to address the committee regarding his anxiety alone.

He’s come so far, I’m willing to overlook the fact that my mildly-autistic little guy shows more signs of this disorder as he gets older, not less. He’s come so far, I’m going to try not to think about him and his ‘quirky’ qualities being the fertile bullying ground I know them to be in the middle school.

Today, instead, is about celebrating how far my quirky guy has come.

In case we missed the memo, we received a note from the school just a couple days ago, asking us to attend the year-end award ceremony.  It seems this serious, empathetic red-head will be receiving the Citizenship Award.

As he graduates from elementary school and the protection it afforded him, I’ve decided to celebrate instead of worrying about what could be around the corner.

Oh, we’ll talk with the specialist about considering anxiety medication. And he’s already saved the library’s summer reading club flyer. He’s going to have a busy summer. And he’s going to keep pushing himself to new heights.

Not because we do or don’t focus on the positive, but because he is focused on the future.  He wants to keep reading. Writing in his journal and drawing the comics he loves to characterize are very important too. He thinks college is a good goal to have, he’s said.

Of course I agree wholeheartedly.

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Sometimes a Cold is Just a Cold

In kids who are chronically sick, it’s never that simple

I woke to a groan, the muffled sound of coughing barely discernible.

Logan and his string

Logan was home sick for two days, only going back to school on Wednesday. He was just as eager to play, even though his breathing sounded horrible. His string was as fascinating as always!

The groan was from my husband. The wet-sounding cough, interspersed with soft nonsensical ramblings, came from the kitchen, and was Logan’s wake-up call a few nights ago. Ear attuned to the shuffling as he moved closer to our bedroom door, I nudged my husband and we decided, in a split second meeting of eyes, to see just how sick the little guy was.

He was fine hours earlier as he and his brothers laid down for the night. Now, at two-something in the morning, I listened to the almost lyrical quality of his talking in between the the soft shuffling and congested breathing. It’s amazing how much a child who doesn’t speak can talk.

In less than a minute, his disheveled form appeared framed in the light from the bathroom, hair glowing like fire in a ring around his head. I can wax poetic now, but at the moment I remember looking at the not-so-poetic and quite disgusting green slime smeared across his cheek and still edging, dripping, downward. Snot just isn’t pretty. When it’s colorful, it’s generally a bad portent of sleepless nights, fevers, labored breathing, and even the odd break-through seizure (or a dozen, but who’s counting?).

Fast forward to this morning, and there was a meeting of the eyes again. This time, my husband and I agreed, the cold had done its worst and Logan, thank God, was well enough to go to school. He tends to become more rambunctious when sick, rather than sleepy and still. For the sleep-deprived parent, a rambunctious Logan, sick or not, tends to become a blur of motion and energy which, in my very humble opinion, sicks kids should not have.

What’s the big deal you ask? It’s just a cold. 

That’s just it. A cold is hardly ever just a cold in our house. Logan, who tends to catch colds often, has breathing difficulties when he’s sick. When Logan has a hard time breathing it leads to breathing treatments and seizures. His asthma hasn’t actually flared up for a while now. Which is amazing considering how often the child has had colds so far this year. The seizures, though, have been particularly brutal over the last several months, only slowing in intensity over the last few weeks.

Still, it’s just a cold.

Not when your kid has epilepsy

For Logan, and for lots of kids with epilepsy (as well as lots of kids with other special needs), being sick with even a simple cold can lower his  seizure threshold enough to make having a seizure more possible. A seizure threshold is just the point at which one person might have a seizure (epilepsy.com). Many times, Logan has had one of his “seizure days” because of a simple cold.  A seizure day, for Logan, means that he has continual seizures, spread just far enough apart that giving him rescue medicine isn’t always advisable. Sometimes these are absence seizures, or petite mals. Other times, they are grand mals. In other words, sometimes he just stares off for a few seconds or minutes, and sometimes his body goes into convulsions and he stops breathing.

Have I mentioned that I hate the color blue? Since the first time I had to give Logan emergency CPR (which was more rescue breathing, since his heart was still beating –I checked) because he wasn’t breathing during a seizure, I have hated the color blue. To me–it always brings to mind my child, on the floor, a pale blueish gray, unmoving and nonreactive and moments away from death.

I like that rosy hue, not pink but just a little bit duskier, that signifies my kid is breathing again, that signifies that he lives. I know, I’m a little weird that way.

When a cold isn’t simple

When your kid gets sick easily, and when getting sick means they have seizures, and when having seizures means they tend to stop breathing? That’s when a cold ceases to be a simple cold. Which brings us to another sad, but wonderful fact. When your child is sick, and he tends to have that seizure, the one where he stops breathing, anytime he’s sick … when that child gets sick but it really is just a cold? It’s a rare and wonderful occurence.

This morning my husband and I anxiously listened to Logan breathing, studied his pupils until his eyes blurred indistinctively, and pronounced him fit enough to go to school. While I stumbled to the computer afterward, my husband stumbled to bed. Sleep deprivation is only fun for so long, after all.

In honor of parents everywhere, who watch the sniffles for reasons other than trying to tell what color the snot is.

This is National Epilepsy Week, so read a little more about epilepsy and think of someone you know (or think of a stranger, like Logan). Epilepsy, like most special needs, is never a diagnosis in and of itself. 

With thanks to Rob Gorski, from the Lost and Tired blog, for taking the time read this ahead of time. And with thanks to Francesca. 

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Ya’ Think? ‘Child With Autism May Affect Family Income’

Child With Autism May Affect Family Income.

This is the headline from many different sites from the past couple of days. Don’t get me wrong, I think it’s great that they are studying how poor we all are. Wait. That sounded bad. But really, was there really any doubt?

The staggering effects of having one child with autism go far beyond finances and stress-loads. It’s a socio-economic crisis as more and more children are being diagnosed. How many families are like ours, with two or even three children on the spectrum? Out of those diagnosed, how many are severely autistic, requiring more interventions, therapies, household costs, additional budgetary concerns, and the list goes on.

I recognize the importance of researchers needing verifiable data upon which to base further research. I do. How about we consider their statistics and compare them with the National averages? Hm. I guess that’s something I could do.

But then again, I have three little guys who are autistic. I have more important things to do than verify how dismally my income compares with National averages, much less how many of my peers are in the trenches with me — tired, poor, and maybe just a little overwhelmed.

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Hope for Logan (New Research into Non-Verbal Autism)

Non-verbal Autism Research Highlighted at IMFAR

(via Autism Speaks Official Blog)

I won’t go into the individual studies, but the IMFAR highlighted research into non-verbal autism by Autism Speaks grant recipients. The bottom line? Studies are showing that non-verbal kids are capable of understanding far more of their world than given credit for.

As the parent of a child who is non-verbal, this doesn’t tell me anything I don’t know. Yet, the implications are that the research results might lead to further study and development and possibly therapy techniques that will work with these unique kids.

That is a big thing.

And this is why …

Meet Logan

Logan playing with water

From a recent drip to Disney, Logan enjoyed a chance to play with the water, stimming on the stream of coolness as he de-stressed.

Logan, my 6-year-old little charmer, has apraxia – a neurological disorder that makes it hard to for him to associate words with actions, or to express words even when he knows what they mean. It’s more complicated than that. But, similar to his autism, I tend to consider his apraxia another lock on his brain, making it difficult if not impossible sometimes for us to communicate with him.

Signs don’t tend to work, or communication boards. It’s a tired game of intimately knowing and understanding what the few sounds he does utter mean to him, and of decoding the way he acts. He has recently just started dragging us to the desired item, or patting it. I feel this desire to communicate is something we can work with – we just haven’t unlocked the language of Logan yet.

Consistent and intensive speech therapy has helped Logan in the past, but the results themselves weren’t consistent, and we had to fight for any of the therapy to be covered. These days, I wonder if we’ll ever hear him speak beyond the approximations of our names he has gifted us with (His brothers are “dee” for Andy and “bee” for Bobby, while Daddy sometimes gets the closest approximation. I lag, I guess, because he doesn’t attempt my name often, though I still get the occasional “mee” for Mommy).

We’ve occasionally heard him say ‘ball’ and other words, but never with consistency. He used to sign “more’ and “eat” and “drink” but we have to use hand over hand guidance to get him to do so much of the time now.

When his seizure activity increases, we tend to lose ground, and sometimes we don’t gain it back. It’s a constant battle for Logan’s attention, health, and desire to communicate at all, and sometimes I wonder whether we will ever gain some type of consistent, ongoing language with him, ever. And if not, what? If we can’t get him interested and consistently using sign, and he doesn’t seem to understand pictures (he’s shown some limited success at school, but again, nothing we see consistently).

I won’t give up. We still work with him every day to make some kind, any kind, of progress. Maybe we’re looking for the clear and stated when the understated is where we can see the evidence of his understanding of the world around him. Logan understands what we say, sometimes even responds to it. He understands many things. It’s clear when he reacts specifically to something we have said.

The Importance of Due Diligence, of Research, of Hope

These things cannot be overstated. Parents like me, like my husband, we need to see that others are as desperate and eager to find answers as we are. There is hope in the act of researching, and when there is evidence that research is paying off, there is more than hope. There is this idea that we are vindicated.

All the times we said Logan was in there – we just had to find a way to reach him. We were right. Not just because we are his parents know him so well, but because there is research that is proving us right. No, we don’t need this research to tell ourselves to keep trying. But we can point to it when others don’t want to.

♥Kat

What does research like this tell you? Does it give you a new feeling of hope or does it even register in your world of parenting a special child?

Non-verbal Autism Research Highlighted at IMFAR By Leanne Chukoskie, Autism Speaks In 2008, Autism Speaks kick-started research in the area of non-verbal autism through its High-Risk High-Impact initiative. This year at IMFAR, Autism Speaks-funded research was featured in the Invited Educational Symposium titled Characterizing Cognition in Non-verbal Individuals with Autism: Innovation, Assessment and Treatment. Geraldine Dawson, Ph.D., Autism Speaks’ Chief Science Officer, chaired the session … Read More

via Autism Speaks Official Blog

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Autism and Cops- When Two Worlds Meet (via Autism Speaks Official Blog)

Considering Public Scrutiny

This post on the Autism Speaks blog reminds me why I don’t have to fear every social interaction my three boys and I have. My guys are all unique in their own way, but all three share the diagnosis of autism. In this they are all unique as well. Strangers on the street, in the stores around town, they sometimes remember one or all of the boys. They sometimes ask about them, not because they are remembering ‘that little autistic boy’ but because they are remembering one or all three unique, mischievous, sometimes-stimming, and always-entertaining boys.

As parents of (or in Josh’s case, sibling of) someone who is autistic, who has some developmental delay or disorder, we sometimes fear interactions with those in authority because we fear their reactions to our loved ones. In the same way, we sometimes fear society at large and their reaction to our loved ones. To us, the mannerisms and sometimes-strange looking things our guys do is part of who they are, something normal. But to those on the outside, they do look different, and those mannerisms do sometimes stand out.

Remembering that the way our guys act, talk, don’t talk, walk, skip, or otherwise interact with their world is something we are aware of by default. We can’t assume others won’t notice. But we don’t have to fear their scrutiny. Instead, using these opportunities to even simply say “they have special needs” or “they are autistic” or even, sometimes “you know, they don’t understand why you are upset and I don’t care.” Okay, maybe not the last one (although on one occasion I did use a variant of that one). The important thing is to remember your loved one is doing nothing to be ashamed of, they are not individuals to be ashamed of.

Celebrate them, love them, and explain their actions if you have to, but don’t apologize when they are just being themselves.

♥Kat

Note: Sometimes, it is appropriate to apologize if they cause a disruption in a public place, even to have them apologize if they cause a disruption, but never for acting in that way to being with. That’s how we act in public with my guys. It’s a subtle distinction I am careful to make. How do you handle public instances? What about Josh and Andrew’s story?

Autism and Cops- When Two Worlds Meet This ‘In Their Own Words’ is by Joshua Bongawil, a former intern at Autism Speaks. His 28 year old brother Andrew has autism. They live in American Canyon, Calif. When Andrew takes Louie for a walk, he strolls as if both of them are in their own world.  Andrew, in other words, is calm and focused, when he has command of our poodle. … Read More

via Autism Speaks Official Blog

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Do I Have to Answer that Question?

Bobby's Smile

Bobby has never met a question not worth asking again. And again.

The anatomy of a Question

My oldest child, Bobby, is one of those kids who must question everything.

Why do I have to go to bed?

What happens if I don’t go to bed?

What happens if I go to bed and I have to get up?

Why do I have to go to bed?

His eyes are brown, but look almost pale blue because of the scarring on his corneas due to Rieger Syndrome, a rare disorder he happens to have. When he thinks about the world around him and when he sometimes asks his questions, his eyes scrunch up and twinkle, and he will even, fleetingly, glance at our face if he’s very interested in our reaction.

Will you read this to me?

Will you read this to me now?

When will you read this to me?

Will you read this to me?

He’s always interested in not just our reaction, but in how we react. He’s become a miniature expert in reading body language when it comes to those he deals with on a regular basis. He can tell when something he’s asking is frustrating us, amusing us, or even if it stumps us.  And he will adjust his questioning accordingly.

Bobby: Do I have to get dressed?

Mom: (who really needs her coffee): Do you want to go to school?

Bobby: Yes. Do I have to get dressed?

Mom: If you want to go to school then yes, you have to get dressed.

Bobby (with a sideways glance and fleeting grin): But I have to go to school.

Mom: Then you should get dressed.

Bobby (grin in full force): Do I have to get dressed?

Bobby is curious and autistic. Repeating the question is–for some reason–reassuring to him. When he’s assured of the answer, or seems to know what our answer will be, he’s free to be amused, sometimes quite amused, at our expense, since he knows his endless questions try even our best attempts at patience.

While we are still working on helping him cope with this little obsession (and trying to stay sane), he sometimes surprises us with the questions or comments he shares in diligent, thoughtful, and mischievous ways.

I’m reminded of a story his teacher told me. This isn’t exact recall (I have slept a few times since then).

Teacher: Well, I have a little bit of a funny.

Mom: … ?

Teacher: He was asking what was going to be for lunch and I told him. And he asked again. Well, I turned it back into a question. Or I tried. It didn’t work. He kept asking.

Mom: Surprise.

Teacher: Yeah. [laughs]. So we came up with a new rule that once he’s asked the question, if we’ve answered it then he doesn’t get to ask it again.

Mom: And how’s that working for you?

Teacher: Well, he was asking about what was for lunch today, and when I reminded him that he already knew that answer he thought for a minute and then asked: “What’s for lunch tomorrow?”

I remember thinking that was so Bobby and such a testament to how much thinking goes on in that head of his. But that brings me to the second part of this post.

Thinking Beyond Today

Bobby’s obvious way to work around not being able to ask the question he wanted was to ask the next one.  I wonder, what if, like Bobby, we were told that we couldn’t ask that question yet again. You know the one. We’ve all asked our own version of it.

Why?

What did I do?

Why us?

Why my child?

Did I [insert whatever popular idea is making the rounds at the time]?

What if, like Bobby, we were told that we had already asked that question.

Well, I never really got an answer, you say. Sometimes, the rules of life aren’t fair. We aren’t given answers to the questions that plague us, regardless of how often, in how many different ways, or however plaintively, pleadingly, we ask for the answer this time.

I do believe in God, and there are platitudes I could answer with right now, that other Christians have offered me during the years. These pseudo-answers to the questions we ask so earnestly do nothing to dampen our zeal for that need to know. I can say what I do believe, is that everything works out according to His will. Not that I particularly agree with His will. In fact, if He’s asking, I have a few suggestions.

But either He’s not listening or His answer is lost in translation. In any case, I don’t receive those answers that would make it all okay, that explain it all and make the world right again. It doesn’t mean that my belief is any less if I just say that in this regard I struggle. And I still have questions. Sometimes the same questions. Sometimes many times over.

In this respect either I am very much like Bobby, or maybe he is very much like me.

Bobby was told he couldn’t ask that question again, so he just asked a different one, one that he knew he would get an answer to. And for him, at least, that solved the dilemma, until it was time to ask the question again. For Bobby, the echolalia and the OCD tendencies that are part of his autism are behind the questions, and are part of what makes him unique.

I, however, while sometimes slightly insane, am not autistic. I ask questions as a part of the process. That process is part of having three kids with varying disorders, disabilities, abilities. I want to understand their thoughts, their dreams. And when they can’t tell me what they’re thinking, I still want to be able to understand them. If, like Logan, their speech is stuck somewhere in at best a different or damaged brain, I still want to understand. And part of the understanding comes from questioning.

Sometimes, in life, we ask the same questions over and over. And we never get an answer.

But sometimes, if we look outside the spoken word and instead at actions and emotions and intent, sometimes we receive answers we didn’t know we were looking for. Logan can’t speak, but when he suddenly comes up and grants one of us a powerful leg hug (he wraps his small arms around our legs and hugs for all he’s worth), he tells us that for that moment he is happy.

I can ask the question Why?  and never receive an answer, but when I look at these three beautiful boys, I have to wonder if they aren’t the answer to the question.

Instead of Why? maybe I can ask Why not? or even Who else?

It sometimes isn’t the answers that we are seeking in the repeated questioning, but the right to simply ask them. And if we aren’t allowed that questioning, or if, like Bobby, we’re told that we already asked that question, then we either have to ask a different question, or look for the answers in a different way.

Kat

What questions keep you up late at night? What questions have you asked yourself so many times you lost count long ago? 

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In loving remembrance …

I have seen this on other journals. I’m unsure of the significance of doing it today, except for the fact there really isn’t a “perfect” time to do so. A given “month” or “week” or “day” or whatever isn’t anything but a glorified attempt to do the same thing with Organizational support. So,

In memory of family and friends who have lost the battle with cancer; and in support of the ones who continue to conquer it!
Post this on your LJ if you know someone who has or had cancer.
In my life, I’ve loved and lost many, but those I have lost to Cancer have left their mark in my life:

My Mother, who passed (long ago) when I was a teenager
I will always remember her willingness to talk about anything with her dorky little girl.

My Aunt,  who passed away just last year.
I’ll always remember her words, and practice them often in my own daily life: Any time she would come over and help or even just come for a visit, when her and my uncle would help with that much needed $20 right when we most needed it. She would brush off my Thanks with the words I’ve adopted as my own: “That’s what Love Does.”

So, those are the two who have touched me the most deeply, though I’ve been effected by several others in my life who have successfully tackled Cancer. Take a moment to think on those in your life affected my Cancer and remember to show your love and respect for them.

Kat —

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