Heart leak.

Sometimes, moms hearts leak. That’s right, I said that. They freaking leak.

As parents, we do our best. We work hard, we change sheets, wipe butts and kiss boo boo’s. We do these things and we hope for the best. The best albeit is relatively different for everyone, naturally this, among other things define our parental identity.

We have an identity outside of parenthood too though. We’re employees, sisters, wives, friends… we have dreams and desires. We have ideas and what if moments. If we’re lucky enough, all of this exists together in a harmonious balance. But, sometimes stuff goes wrong. Then, we grip to what we need and we again hope for the best. We pray for what we can’t control and when we can we extend our hands to help others.

Grief can trigger that. That need to join hands. The need to slow down and appreciate everything you have and everyone in your life.

Our beautiful 4-year old boy, Cooper, had an MRI last week. His second one since we learned he has NF1, (Neurofibromatosis Type 1.) We learned he had NF1 when he was still just a baby. We knew this disease was something he would have his whole life and that we would have to watch for concerns.

There are essentially two approaches you can take to caring for NF1. You can live your life and ‘hope for the best’ go to the doctor like you or I would if there are fevers, falls, and/or other concerns.

Or you can do occasional MRI scans to watch for areas of concern. Since it’s been almost 3 years since our last scan, our geneticist recommended we do another scan to compare to the data on his first scan when he was just a baby.

I’ve been impatiently waiting for his geneticist to call me back all week and today, she finally called.

I was at the lake. I took today off to float in the beautiful lake and take in as many sun rays as possible before the college students return, footballs are flying and the midwest fall sets in. My phone rang.

She told me there are no visible gliomas. That’s good, I think. But when comparing the data to his first scan there is increased T2 signal within the cerebellar white matter prominent in the basal ganglia.

Friends, I do not know my brain terms. This is gibberish to me.

Essentially she’s referring him to a Pediatric Neurologist in Minneapolis. She said he may request that Cooper have an MRI every 6-months rather than every year or two. She also said she has some concern about the increased white matter entering into his brain.

Let me tell you… Nothing makes my heart want to leak more than the thought of something happening to one of my little people. We all cope with difficult news differently. As many of you know, I’m also a mom to a special little boy with Williams Syndrome. Doctors appointments, scans and trips to Minneapolis are nothing new to us. But we also, naturally, felt like now we did that… and now we shouldn’t have to anymore. I mean that makes sense to me?! That’s fair right? But life’s not fair, life’s a circus. I tell my kids that all the time. So why shouldn’t it apply to everyone?

This is a setback. It’s not the results I wanted. I know it’s not what my husband wanted. But we still don’t know anything more either. We know there is an increased T2 signal and increased white matter leading into his brain. Whatever that means. What I know for sure though is that our special little man is strong, determined, so-so funny, beautiful and amazingly sweet and imaginative. I’m so lucky to be his mom. He blesses our lives everyday and I will continue to clean his chubby cheeks and say our bedtime prayers each night. Tonight, a few extra prayers for his health are in order.

Getting ready for his MRI with Buzz Lightyear.

xoxo

1MinnesotaMom

Mothers Day: A moment to reflect on me.

A friend recently asked me this question — what makes you tick? 

I thought for a short time and felt challenged by this question. I knew answers. But I didn’t know THE answer. I know what makes me want to wake up in the morning. What makes me love my life. But what gives me my purpose and makes me want to grow? She presses on,

What do you really do for yourself?

Nothing I said would call off the dogs. She challenged me to dig deeper, to find a way to give to myself more than I do currently. It’s true – I don’t give to myself enough, whether it be the time to relax or the latitude to recognize i’m not perfect and I never will be.  I’m a doer. I’m a helper. I give my time to others freely and those contributions give me a sense of accomplishment and in a way, helps me (like most) feel needed in this big world.

What do you do for you that really makes you tick?

Crap… I’m good at a lot of things, (you might be thinking, damn she needs some humble pie, but I really am good at a lot of things and I recognize my talents) but, why oh why do I suck at taking care of myself? I really am awful at it. 

I need to lose weight, get more sleep and exercise… and I really need to care about needing those things more. My diet is rushed and I attempt healthy only some days. The others days sound a little like dire hunger overtaking great intent. I’ll do better…. I really do know better. 

Writing makes me tick. 

Yet, most days honestly, I feel way too exhausted to use my brain anymore after leaving work. If this sounds like an excuse, it is. But it’s also really true. Most people feel the urge to write or use their creativity most first thing in the morning, before any social media, emails or tiny humans have entered their day. I’ve read this advice from great writers, ahem, Elizabeth Gilbert, but still I don’t. I stay up late and watch mind-numbing television that does nil for my mental or physical health. Yet, it relaxes me to not have to think, do or care about anything for just a short time. I need that sometimes. I love TV and I don’t anticipate giving that up anytime soon, but if I cut back and go to bed early — maybe, just maybe that would give me the motivation to get up early and practice this morning creativity and writing. 

Writers often say, “I don’t know what I think until I write it.” That’s so true for me. Throughout the day when I find myself explaining things, sometimes one thought overtaking another, the thoughts are formulating quicker than I can literally communicate them. I know I need to slow down. I know I need to focus and sometimes quietly to myself I make a wish to write it instead. Yes, it takes more time, but it’s so much more methodical and peaceful. It’s not rushed or misunderstood… It’s just words as they should be, preferred to be.

I just fed my boys lunch. We went to three different parks this morning after I gave them each of them a hair cut. They all somewhat tolerated it. But the middle one screamed a lot all morning. It often brought me back to that question – what makes you tick?

I can tell you what doesn’t make me tick and that is that blood curdling cry coming out of my little boy. No pedicure, massage, candle-lit bath or time at the lake can regrow the death of those brain cells after those screams. Only this… maybe. The chance to spill out the words that have been dancing around my head since I’ve last chosen to take the time to really write. Words tripping over each other like an annoyed mom trying to simply walk across the kitchen, ahem, me. 

I want to be a better mom. One that doesn’t get frustrated with my kids so much, but I can’t be that. I’m just not that person. I get frustrated and I sometimes even raise my voice so they might actually listen to understand that I am indeed serious about them wearing clothes while they eat, sleep, you name it, function in the real world. I have to be okay with who I am as a mom, wife, employee, friend… because this is me. I can try to be better and make better decision and somedays I might even succeed at that, but some days I’m not going to and that’s okay too. 

Creativity and freedom of expression… makes me tick.

Some say creativity is a curse. Some says it’s a gift. It’s freaking both. The gift of creativity helps me out in life, often. It’s helped my career, my family, personal relationships, but it’s also demanded my time in all of those same places. It’s created more work for me when my body says, rest. It’s created complications in projects that are intended to be quite simple. It’s the need for better, for something different than the average that shrieks inside me. Why can’t I just do ordinary and be fine with that? Because I just can’t… and when I am okay with it, I’m really very tired. I need to rest and take some much-needed me time.  

But let’s be real, sometimes that isn’t realistic. Sometimes life goes on despite the need for some rejuvenation. And sometimes, I really suck at stopping and giving myself that time, even when I can. Because slowing down, stopping even, means getting behind. It means work, chores, time away from people I care about, it all builds up… and I can’t stand feeling behind. It feels unsafe, uncertain and unsatisfying. 

But the reward of rest and renewed creativity comes with a cost and it’s worth investing in. It makes me feel inspired, increases my self-worth, confidence and hope. 

It’s Mothers Day. I plan to spend the day with my tiny humans and my mom. Tomorrow, I give myself permission to just not accomplish anything, but let’s be real, I’m not sure I’ll take it. I’m just not built that way.

But here’s to trying. Happy Mothers day, friends!

If you’re a fur baby momma, that counts. Take the day off. My dog is the cutest dog on the planet. I’m convinced. He recently learned to high-five. Duncan Dairy Host is an epic dude.

xoxo

Kerri

If you have any questions for me, please contact Kerri Kava at 1MinnesotaMom@gmail.com or on social media at:

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I did it!

To read from day 1 click here.

What we hoped to be the last day of the program, Carter woke up to a letter of encouragement from dad. He read it out loud and I think it helped him get ready for the day. We drove to Fargo for the 9th time in two weeks with high hopes of graduating from the program. We are ready for a break from the intensity that is eating under the microscope and timers. But more excitedly, ready to move on to eating at home, which was the end goal all along.

IMG_0404The first session of the day was hard. For breakfast he had:

  • A sausage patty
  • a bowl of cereal with milk
  • Apples slices

He ate, but not fast enough. The sessions are timed to increase the feeding speed. He eating more variety, but he over chews and takes him a really long time to eat a whole meal. Given the average school lunch is 15 minutes (too short) we need him to speed up if he’s going to gain nutrition and have a full tummy. Despite not ‘beating his timer’ as we call it, I was so very proud of him because if he wouldn’t have picked apples he would have beat his timer. Fresh apple slices take way more time to chew than mandarin oranges or peaches from a can. So even though he didn’t ‘pass’ we hopped in the elevator and I gave him the biggest high-five and hug because I still cannot believe what he is eating.

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Even though he did well, he couldn’t play iPad. He could read, but he opted for a nap. Lunch time was another big challenge. We grabbed his food from the cafeteria, which still had no air conditioning for the short-term. Apparently the air conditioning was still under repair. It was hot and sticky and the food choices were limited.

He had:

  • Hamburger with ketchup (no gluten free buns available)
  • French Fries
  • Mandarin Oranges
  • Corn

He didn’t make his 30 minute timer this time either. This meal was actually one of the hardest meals. After 30 minutes the rule says I need to leave the table. This was hard because he said,

‘No, Mom don’t leave me!’

I swallowed my emotions and left the room… I watched the remaining 30 minutes (sessions are capped at 60 minutes) from the viewing room. I talked with his team and how to move forward. Since Carter is eating everything, just slowly they feel he is ready to go home since they know we are dedicated to following through with the same rules the program applies. We prepared to discharge, but Carter had one more ‘snack’ session at 4 p.m. He had:

  • Peas
  • A Cheese Stick
  • Grilled Chicken

He beat this timer with no issues. Which was great to end on a successful session. He was so proud. One of his team members said he could have a popsicle if he beat his timer. Since he accomplished this, he played out his secret handshake with one of his favorite team members and remembered his reward, below:

After we left, Carter got to go to Party City to get a new collection of bouncy balls that Mom and Dad promised him after graduating. All of the packages were removed from the rack so he could choose the best one. I think he made a solid choice with his ‘Mega Value 40 Bounce Balls’ which are all mixed in to his bounce ball collection already.

Overall, I couldn’t be more pleased with the outcome of this program. While it was ‘intense’ as the program is appropriately titled, it was worth it. The crying, the gagging, the rocking, it’s less and less every time he eats. Yesterday, we visited the mall and he ate a taco for the first time. Last week we visited Zorbaz and he ate nachos. We went to a family picnic and he ate several different salads and even brisket. There are still a lot of foods he doesn’t love, but what matters is that he is now willing to try them and eats what is put in front of him. There is still some queuing, but he’s doing a great job and we are really proud of him.

This is another unique challenge that he has overcome. He’s learned to teach his sensory processing disorder who’s really in charge. The best part is when he eats something new and says,

 ‘Hey, that’s good! I’ve been missing out!’

Not anymore, little pal. Let’s eat!

xoxo

Kerri


1MinnesotaMom@gmail.com

First time, small fry.

Day 2 of Intensive Feeding Program (for day 1 click here)

44EBC9B8-76F0-4158-9DE8-8DD27D55AC5DTreatment begins today.

Walking in he was still happy as can be to come to his ‘class’ since so far, he hasn’t actually had to eat anything new. Easy peasy, right? Wrong.

The first session was actually the most difficult so far. He had to eat one small bite of a mandarin orange. He cried and threw a little fit. Quickly, however he learned that this behavior would not resolve his present scenario. Despite the presented emotions, he was still expected to eat his food and not cry. If he cried, his reward ended and he had to go back to the treatment room. Amazingly after 5 more sessions throughout the day, he didn’t cry again. He’s had some hesitation and once spit out his cheese, but did put a new piece back in his mouth. Overall he did very well in his sessions and quickly ate the one bite that was expected of him today. As the sessions continue, he will have to start eating larger pieces and more bites. But for now, he eats his one bite and he’s done. Baby steps!

It’s a pretty surreal experience to see him try foods he’s never been willing to try before.  Could you imagine, 10 years on this earth and never eaten a single french fry? Today was the day. He didn’t like the french fry, but he did like grilled chicken, which is great because we always have grilled chicken in our fridge.

At the end of day 2, Carter ate a bite of: 

  1. Mandarin Orange
  2. French Fry
  3. Peas (2 whole stinking peas!)
  4. Grilled Chicken
  5. Cheese Stick
  6. Pineapple

We get a lot of little breaks which is nice. There are two parks within walking distance and he has made friends at each visit to the park. I expect him to continue to progress well since he won’t be able to visit his pals at the park if he doesn’t eat in his sessions.

His love of bouncy balls has also been a great reward for him. He only gets to play with them when he excels in his class. Today, he talked with his doctors about graduating. He decided he wants to graduate soon so he can just stay at the park all day.

At the end of the day we rode the elevator to the parking garage and pushed open the door to the smell of fresh midwestern air. It was busy outside with cars and construction across the street, but I stopped in my tracks when I heard him say, “Mom, I did so good… Let’s take a selfie!” Um… have we met? YES! Clearly, I’ve trained you well, my little dude.

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I’m thankful for the blessings in my life (my job, family, support system) that allow me the opportunity to support him through this program and experience the difference it’s making in his life.

To continue reading, Day 3 click here.


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Nerves for something new.

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Singing like a Kookaburra. He’s not nervous at all. Why am I?

As I wait for the next step in my son’s feeding program to begin, I find myself in the middle of a bright room filled with a diverse group of people; doctors eating quickly, parents chasing kids, children running from parents, workers folding boxes and others preparing coffee or tea. The machine is whirling and the smell of food and coffee is all around. It’s a moment to people watch and it’s also a moment that should be fairly easy, after all we’re just waiting here for our next session, but I’ve challenged myself to write more honestly and so that’s just what I’m doing today.

I’m writing this with little intention of publishing, so if you’re reading this, I was real brave. 

The truth is, this program is meant for my son Carter to learn to eat more foods. It’s not that he can’t eat. He can chew, swallow and decide what he wants to eat. But what he really needs to learn is tolerance. Can he tolerate more than what he’s currently choosing to eat and how far can he truly go? Most of us can tolerate almost any food of our choosing, of course we don’t prefer all foods, but for the most part we are willing to try. This is where we need to do some work. Carter prefers about 5-6 different foods (total) and as I’m sure you know this is not ideal for optimal nutrition.

As I sit here, I realize that I too need to do some work. I know that I will learn from this program, just like Carter will. I know that my approach to this eating change needs to be calm, confident, and positive. So that’s what I’m working on here, as I write. Writing calms me. It reminds me of what I’m capable of. It helps me gain the confidence and strength I need to be his support system.

B7EC0DDC-73C3-406C-9214-E3FE08FCBBFB.JPGI don’t feel like I struggle with this most days, but today we are focused on something we’ve looked over for several years. A challenge I thought was permanent until now. The thought of even asking Carter to eat something other than what he prefers is daunting to me. He cries. He kindly yells, ‘No, I’m using my manners!’ This makes all those ‘feelings’ come out. That feeling when I’m asking him to do something he doesn’t want to do. He’s charming and excels at convincing most people of just about anything 99% percent of his life. So when he asks me, ‘Just, just, just give me some yogurt and my banana,’ that truly is just what I want to do. But we’ve been doing this too long. Standing still. Pretending it’s okay when it’s not. Eating the same thing day-in and day-out, does not provide him with a well-balanced diet, even if it sounds ‘bananas’ to him.

He’s my heart. My pal. We’ve been on this Williams Syndrome extraordinary gifts and unique challenges route for over 10 years now. From understanding it, accepting it and halfway through raising this remarkable kid, there are times you want to feel ‘done’ with certain parts. Like the feeding therapy he participated in from 2-6 years of age that honestly did not work, that’s behind us now. I was glad that was behind us. Who wouldn’t be? It was stressful. Intrusive conversations that (for most families) are kept within the 4 walls of your home. This is a privilege most parents are afforded. These conversations, at times can hone in on my own parental identity. But, that’s when I remember this isn’t about me. It’s about my little boy and his need to develop his own best self as we together create our own best life.

So as we go down this journey, I will write and if you choose to follow along, I hope you too learn something along the way, even if it’s just a little awareness about the unique life challenges of others.

Today: Assessments

Tomorrow: Treatment Begins (Read about this here.)

xoxo

Kerri


1MinnesotaMom@gmail.com

 

 

 

Our parental identity.

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Coloring dads face with sidewalk chalk. Why not?

This fathers day I’d like to reflect for a moment on a message that genuinely changed my perspective and approach for parenting.

The overall message spoke about our insecurities as parents:

We are consumed with what others think of us as parents.

So often, as parents, we are so busy rushing our kids to practice, games, and school events just for slight opportunity at an athletic scholarship or so our kids will be ‘happy.’

The message challenged listeners with the following questions:

  • What are we willing to invest in their spiritual life that contributes to their overall happiness into adulthood?
  • Is our approach contributing to a life filled with grace and hope?
  • What drives my belief as a parent?
  • Why have I been given children?
  • How do I make decisions regarding my children?
  • Who and what brings your children fulfillment and purpose?
  • Do you make them look good so you look good?
  • Are you the envy of your community, but in agony in your home?

Instead of constantly defending our insecurities, we instead need to defend our identity as parents with a movable pliable approach.

Instead of making excuses for our children, we need to ask ourselves, ‘Is this really happening? Do I need to change my approach? What can I do? Can this person teach me something so I can become a better parent?

When we parent out of insecurity, we pass that insecurity on to our kids. If we teach our children to live in grace with hope and purpose, we pass that on instead.

Nothing else matters. Not what kind of shoes they have or how many theme parks they’ve visited. They are happy and satisfied when you give them your time and are surrounded by grace and love.

To learn more about this message, visit:  “Whose Kids Are These Anyways?”

My identity as a parent?

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Color my face too, daddy!

This message meant a lot to me as a busy working mom of three little boys. Some might be offended by it. I get it. Parenting is a personal thing and we all want to be great at it. That feeling of being judged as a parent, or even worse the lack of communication where you’re just wondering what someone else is thinking of the oatmeal in your hair or the 3 little boys in your cart chanting songs as you check out in the grocery store. The truth is, we are all doing the best we can.

Parenting is the hardest thing I have ever done. More difficult than college, more difficult than being married, more challenging that any job I’ve ever had. But I do know that seeking a grace filled life makes my job as a parent 100% more enjoyable and meaningful. I’m not perfect, but I’m also not alone in this world. I have the grace and support I need all around me and together with my husband, I’m teaching my little boys to be compassionate people and who focus on what really matters in life.

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So hears to the dads out there (and moms) who need a little encouragement, a little high-five, a little ‘Go ‘team-parents! You’ve got this.’ You are not alone. If you seek the truth and teach your children to do the same, the insecurities that keep you questioning your identity as a parent and keep you from finding joy in your everyday life will soon fall away.

I don’t know about you, but I love the freedom found in parenting by the standards that we believe are most important and not what our culture or the media tells us should be. I can’t keep up with all of that. I won’t even try to. Instead, I’m going to enjoy our little boys and focus on what really matters.

xoxo

Kerri


1MinnesotaMom@gmail.com

 

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