Sunday, February 23, 2014

Our Stories Matter: World Rare Disease Day is Friday!

I was thrilled to share Regina and Luke’s Story in November during Diabetes Awareness Month, because our stories matter. As I wrote in the introduction to that post….

Our stories as mothers matter. It’s in knowing each other’s stories that we are moved to grace, empathy, and compassion in moments when we might otherwise be tempted to judge. When we share stories together, we open our hearts and we break down walls so that we can support one in another in this crazy thing called motherhood. Because as I’ve said before, mothering is hard, but it’s a whole lot harder if we think we’re doing this hard thing alone.

I look forward to highlighting stories from moms on a semi-regular basis. We all have a story. Maybe yours doesn’t have a diagnosis to go with it, maybe it does. But they all matter.

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February 28th is World Rare Disease Day, and I am thrilled to have a good friend sharing her and her daughter’s story. I’ve known this mother since we were both pregnant with our first children who happened to be due the same month. We met on a mommy message board, but our friendship has reached far beyond a computer screen. She is a dedicated mother who loves fiercely, researches extensively, and now advocates proudly. This is her story.

I encourage you to check out details about World Rare Disease Day and join the Wear That You Care Campaign by wearing your favorite jeans on Friday.

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As I write, I am watching Women's Figure Skating on the Olympics. Did you know that 1992 Olympic Gold Medalist, Kristi Yamaguchi, was born with clubbed feet? I didn't. Until 8 years ago, when my husband and I had our “routine” ultrasound for our first child, and we learned that she would be born with bilateral clubbed feet. After that ultrasound, we, along with our family, read as much as we could on the subject, including lists of famous people who had been born with the condition. Kristi (can I call her Kristi?) actually started ice skating as a form of physical therapy. And years later, those once-malformed feet carried her right to the top of the Olympic podium.

Over the next several months, we developed a plan. We met with the Chief of Orthopedic Surgery at our local Children's Hospital, and determined that he would be the doctor to care for her feet, using the method named after Dr. Ignacio Ponseti, a non-surgical method involving weekly casting, followed by use of corrective shoes connected to a brace. We would start her treatment about a week after her birth.

Childbirth went well. Aside from her feet, she was healthy, and she was beautiful. By the next day, however, the situation had changed. That afternoon, they came to us and informed us that they were having trouble keeping her temperature up, so they were going to put her in the warmer. By that night, they had taken her blood glucose levels, and she was at a 2. Anything less than 40 is considered hypoglycemic, and our sweet girl was a 2. They said they wanted to send her, by ambulance, to one of the two NICUs in the city. As it turned out, only one had room, so she was send to the NICU at the Women's Hospital. I was able to be discharged 36 hours after her birth, because the same doctor who had seen me that morning was still on-call, and could see that I was improving well enough to go with her. (I'm sure the fact that I would be at the Women's Hospital might have had something to do with this...)

Once in the NICU, she slowly started to make improvements with IV dextrose and the incubator, but she seemed to be hanging out just below the threshold that they prefer to reach for release. Five days later, on December 26th (yes, we spent Christmas in the NICU), we were finally able to take her home, but not before stopping at the Children's Hospital to get her first set of casts.

The next year passed mostly uneventfully. She had surgery at 6 weeks old to lengthen her Achilles tendons – the biggest step in correcting her feet. After that, it was 6 straight weeks of the same set of casts, then she was in her shoes/brace. And she had issues over Thanksgiving that eventually led to a diagnosis of infantile asthma, which was cold-induced. Any time she got a slight cold for the next 6-8 months or so, it developed into a full-blown asthma attack. She was hospitalized that May (just shy of 18 months old) when we couldn't get it under control at home, and we were sent home with a nebulizer. Finally, she started to turn it around, but she still had random “symptoms” that were enigmatic. She had no teeth until 15 months; her hair was very dry, brittle, and sparse; her toenails were pretty much non-existent; she was hypotonic (low muscle tone, unrelated – according to her orthopedist – to her being in casts and braces for her first 18 months...as a result, she didn't walk until she was about 2 ½); and she was falling off her growth curve. We saw a geneticist, a neurologist, an endocrinologist, and even a cardiologist, trying to figure out where the problems originated, but the results of her tests were inconclusive. We started early intervention to help with her hypotonia and gross motor skills, and she started to make improvements, but she was still far behind her peers.

For two years, we ran labs every 6 months or so for the geneticist, and each time, it was an ordeal. Many of her blood draws were lengthy and traumatic. She was a chubby baby, so her veins were very deep. We needed the IV team at the Children's Hospital every time, and they searched every vein possible – including in her head, and her feet (which she absolutely hated, because of everything she had been through with her feet). On more than one occasion, we had to leave without having completed the draw and return on another day to try again.

During that time, I became unsatisfied with her pediatrician, so I switched her to a group that was linked to the Children's Hospital. We loved these new doctors; they were so proactive! On her doctor's recommendation, we started seeing a nutritionist, because her weight was continuing to increase, while her height was now below 0% on the growth chart. Then, one day, I got a phone call from a friend who asked for prayers, as she was going in for labs the next day, due to some symptoms she was having, which she thought might indicate hypothyroidism. As she listed her symptoms for me, the wheels started turning in my head, and I got that feeling in the pit of my stomach that mothers get when they just know. I googled “hypothyroidism in toddlers”, and our daughter had probably 7-8 of the 10 or so symptoms that were listed. That night, I told my husband that we needed to have our daughter checked again for hypothyroidism. (The last time she'd been checked, she was 14 months...her T4 was low, but her TSH was high, showing that, while her thyroid was slightly underperforming, her pituitary was pushing the thyroid-stimulating hormone to keep everything functioning.) We had already agreed not to do any more testing, but my gut just told me that we needed to do this one more test. If it showed up as nothing, great. But if we didn't do it, and found out later that we could have done something to help her, I would never forgive myself.

So, I made the appointment to see the endocrinologist again. As it turned out, they had wanted to see us for a follow-up a year after her first appointment, but because we were going through the transition with the pediatricians at that point, we never “got that memo”. We got the labs done, and this time, her T4 was low, but her TSH was also low, indicating the primary problem was not with the thyroid, but with the pituitary gland. At this point, everything started to move very quickly. I can't give an exact timeline, because everything from that time kind of runs together in my memory. There were several more tests done, including multiple MRIs, x-rays to determine bone age, and a growth-hormone stimulation test – a blood test, which took about 3 hours.

The final result is that she was diagnosed at age 3 ½ with panhypopituitarism.

PAN = all

HYPO = deficient

PITUITARISM = dealing with the pituitary gland

Through an MRI, we learned that she has an ectopic (out-of-place) posterior pituitary gland, which is crowding her anterior gland. As a result, her anterior gland is shriveled, and not producing any of its hormones, including growth hormone; TSH, which helps regulate the thyroid; ACTH, which tells the adrenals to produce cortisol in times of physical stress; and, we assume, prolactin, LH, and FSH, which are considered “reproductive hormones” (she has not been tested for these hormones yet). Fortunately, there are replacement hormones for everything but prolactin. Just a few pills a day, and a shot of growth hormone at night, and her body functions (nearly) as well as yours or mine.

The most serious issue of her PHP is her secondary adrenal insufficiency. As I mentioned, our adrenal glands are responsible for producing extra cortisol in times of stress – severe vomiting; surgery; or emergencies, like seizures, loss of consciousness, or broken bones. They get that message from the pituitary gland. But our daughter's pituitary isn't sending that message, so her body can't fight these things on its own. In those cases, it is imperative that she receives a stress dose of oral hydrocortisone (she takes what's considered a “maintenance dose” daily), and in extreme emergencies, she needs either an intramuscular injection or an IV of corticosteroids. Without these measures, she could go into adrenal crisis, and could die.

A sobering thought.

When I think about the 3+ years she went undiagnosed, and all the traumas that occurred during that time - surgery at 6 weeks, several bouts with stomach viruses, MRIs requiring sedation, the hypoglycemia at birth - we could have lost her several times over. I am so thankful that God was watching out for her over those years, and that my friend – who, incidentally, does not have hypothyroidism – called me that day, and planted the seed that ultimately grew into her diagnosis.

Today, nearly 5 years later, she is a bright, happy, healthy first grader, with two younger (non-PHP) siblings. She loves to draw, names each of her stuffed animals, and plays soccer in a community league. We have only had one instance of illness when she needed her IM injection of solu-cortef. She still gets PT through the school, but she is making great strides (pun intended). To look at her, unless you noticed the MedicAlert bracelet she wears, you'd never know she is “sick”. Ultimately, I am grateful for her diagnosis, because we no longer wonder why she had those earlier symptoms. Nearly all of them are attributed to her hormone deficiencies, and nearly all of them are completely gone at this point. I am grateful that her condition is treatable, because so many parents face much poorer odds for their own children. Also, I am grateful that we are not alone in this journey. I have “met” some wonderful parents (online) through an organization called The MAGIC Foundation, which is geared towards raising awareness about growth hormone deficiency and the conditions that cause it. I am looking forward to meeting several of these parents and their children – who are also affected by PHP – this summer at MAGIC's annual Children's Convention.

There are some questions that remain, not the least of which is whether or not she'll be able to have children of her own someday. But we're shelving those questions for tomorrow, and enjoying the beautiful girl God has blessed us with today.

Friday, February 28th is World Rare Disease Day. Panhypopituitarism is considered a rare disease, because fewer than 200,000 people are affected by it in the US. Please visit the following links for more information on how you can help spread awareness of PHP and other rare diseases.

http://www.rarediseaseday.org/

http://globalgenes.org/

www.magicfoundation.org/

Additionally, in many states, EMS do not carry those life-saving vials of solu-cortef in the ambulance, and they are not permitted to administer patient-carried medications. There is a petition on the whitehouse.gov website to work towards a national protocol for EMS to carry these inexpensive (and crucial) vials on-board. Please consider viewing/signing this petition at:

https://petitions.whitehouse.gov/petition/empower-ems-nationwide-administer-life-saving-drug-solucortef-emergencies-adrenal-insufficient/NvTT0h6b

Saturday, February 1, 2014

Hey you guys… I’m worried.

I know I haven’t been writing much. I’ve been in a consuming phase, spending a lot of time reading as I make my way through my third pregnancy and prepare for birth and a growing family. When I’m focused on taking information in, I don’t find a lot of energy or space for creating.

But this week, I feel I need to write. I need to share how worried I am for so many of us. In the past week, I’ve had heartbreaking conversations with no less than six different women who are suffering deeply from depression right now. In one week. Women from all over the country, from all different parts of my life. These women are hurting. They are struggling. They are crying out for help.

“I’m mad at the world. I feel so worthless.”

I don’t know what to do. I don’t want to do anything. Just cooking dinner is too hard.”

“My husband doesn’t get it. He just wants me to get happy but I don’t know how.”

“I’m terrified of how this is affecting my kids. I know this is affecting my kids.”

“How am I supposed to be a good mom when I can’t even function?”

“I get so angry. I’m irritable all the time. No matter how hard I try, the littlest things send me spinning.”

“I need help, but I don’t even know where to start… or where to find the time, money, or energy.”

I knew some of these women struggled with depression, but others I had no idea. These women are all different. Their stories are unique. They are mothers of young children and older children, single moms and married moms, step mothers, women who work outside of the home and those who do not. Some have children with unique needs. Some have high-stress jobs. For some their marriage is holding them together, and for others their marriage is another victim of their illness.

Their stories are all so different, and yet they find themselves in this black hole I know all too well. I’ve shared parts of my journey with depression before, though it has been quite some time since I’ve written about it. I haven’t meant to avoid the subject. The silence is most definitely not because I’m cured. It’s not because I don’t suffer anymore. It’s probably more because I felt like I might be writing the same things over and over. I thought people would tire of hearing my depressing depression story. I haven’t been writing about depression because I am not an inspiring success story, an “I kicked depression’s ass” story. I am the story of a woman who lives with depression daily. Some days it controls me. Other days I control it. But it never goes away. I see how it affects my husband and my marriage. I see how it affects my parenting and my children. I watch in horror as my son struggles with similar feelings, and I actively worry about the effects of my depression on my unborn baby (which, by the way, only brings more depression and anxiety).

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This week, I’ve been reminded that I am not alone. Clearly, I am very much not alone. Sometimes that’s a relief, but honestly, after a week like this, after listening to the raw and painful struggles of six fabulous women, I wish I was alone. I wish it was just me, because listening to their stories and being able to say “me too” isn’t enough. Listening to their hopelessness and fear and being unable to fix it is heartbreaking and infuriating. Of course, there are things we can do to fight depression, help depression, and maybe decrease depression, but they are not easy fixes. Medication, counseling, diet, exercise, meditation, yoga, herbs, essential oils, and lifestyle changes all can help in varying ways for varied people. But there are no easy answers. It’s not a one step fix. It’s a frustrating process of trial and error. When depression has knocked the wind out of you so that just cooking dinner is an impossible task, trying to fix yourself is an even more daunting one.

So this is me saying, dear mom who is depressed, you are not alone and I am not alone, but dammit I wish this wasn’t such a common experience. I’m so worried for those of us living like this. But, please do not be ashamed. Please don’t hide the hurt. What you’re feeling is real. The pain, the hurt, the sadness, the fatigue exhaustion, the anger, the irritability, the hopelessness. Whatever your depression feels like (because it is different for all of us and it can be so different day to day) is real. It’s not real in that it defines you, because you are not these feelings, you are so much more. But the physical, emotional, mental, and spiritual effects of this illness are not all in your head. They are real. The way they feel like they are sucking the life out of you little by little, or sometimes in one giant woosh… it’s not just you, it’s not in your head.

I don’t have any dazzling advice or steps to recovery. I just have my sympathy and compassion. I’m still here. I still have depression. I’ll keep writing, and I’ll keep listening.

 

Here are some things (recent and older) around the internet that have touched my heart:

Strange and Beautiful from the Bloggess

Nest Comic This image has circulated all over social media, but I didn’t get permission and don’t want to share it here without that permission. But this is one I want everyone who loves someone with depression to see. When there’s nothing else you can do, this means so much.

Here is the face of a mom with depression from Honest Mom

To Write Love on Her Arms In their words they are “a non-profit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide”. I love their blog, instagram, and their store. I especially love some of their shirts, like this one I got for a friend recently.

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Sunday, December 22, 2013

Christmas with Highly Sensitive Kids

We think of Christmas as the most wonderful season for kids, but it can be a little complicated for us and many other families. I have two very sensitive kids, one has diagnosed anxiety while both of them have some sensory processing challenges.

Don’t get me wrong, they love Christmas. Their little bodies are quite literally tingling with excitement and anticipation. They feel the spirit of the holidays coursing through their veins. Their senses are bombarded from every angle with beautiful and exciting things to take in – food, presents, lights, people, activities, and more! It’s so hard to contain all this beauty and excitement, they may just burst. Unfortunately, when they burst it won’t be holiday cheer that explodes everywhere but a confused tangle of emotion they can’t quite manage as the holiday preparations and expectations build.

Loud noises, lots of people, the pressure of accepting gifts, the anxiety of anticipating gifts and fun events, and the complete lack of their normal schedule are all things that throw my boys off their game. Worst still, it’s been building since Thanksgiving and Christmas is only now right around the corner.

With this in mind, as we navigate this holiday season, we try to make choices that will set them up for a positive experience. They are still overwhelmed, bouncing from the highest of highs to confused rages as they don’t know how to regulate themselves well enough to keep up with the onslaught, but they are much better off than they could be without these choices.

We ask friends and family to keep gifts to a minimum. We’re not trying to be pushy or unappreciative. We’re not trying to cheat our kids out of the Christmas experience. We just have visions of a little boy last year, crying in his room that he didn’t want any more presents because he was so overwhelmed. With less presents, they are able to appreciate and enjoy each one instead of feeling the need to shut down. We also encourage them to choose presents in line with our values. No violence. Things that encourage creativity, imagination, and cooperation. It’s confusing for the kids otherwise. We are blessed by family who try incredibly hard to support us in these choices.

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We focus on giving. We spend all month making presents, decorating cards, shopping for less-fortunate families, and talking about gratitude. This year, my son was very concerned he didn’t have money to purchase gifts and that everyone is always giving him gifts. So he broke into his piggy bank, and we went shopping. He also wrote heartfelt cards to friends and family and donated money to our church’s world hunger program. These things were inspired by him and helped him navigate the feeling of not being able to participate in the giving of the season. It also helps us steer away from the gimmes.

We try to regulate our kids’ food options. We’re not trying to be party poopers about fun holiday food. We have seen the affects of food dye and sugar on their bodies. It adds another layer of overwhelm that they have to sort through. For the past two weeks (or more!), everywhere we have gone has tried to offer them treats filled with these things… school, church, occupational therapy, the dentist (really, the dentist! Candy canes to take home and hot chocolate flavored toothpaste), and every other well meaning person who wants them to have a once-in-a while treat that is clearly not very once-in-a while. So food dye is completely off limits, and sugar is kept to a somewhat reasonable level. These are firm limits for us which makes the decisions less stressful.

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We avoid electronics and too much screen time. Screen time and electronics are an enticing escape for our kids from the overwhelming real world. Unfortunately, it doesn’t give their bodies and minds a chance to truly calm down and reset. Furthermore, it is very challenging for our kids to switch gears from electronic time back to the real world. We find it best if we say no to video games, phone and computer time. While we try to avoid exposure to too many commercials for all the season’s must-have toys, we do enjoy our fair share of Christmas movies!

We give them ‘outs’ during holiday entertaining. Both my boys know that their rooms are off limits to guests unless they expressly open them up. Even then at any point, they can close their rooms off and that is their safe space. It is a space, familiar to them, where they know they can go to escape, regardless of what is happening. Middle of dinner? Go ahead. Presents being opened? If you realize you need a break, great job being aware of your body, go take it. Their rooms are equipped with some of their favorite tools for centering themselves – music, calming essential oils (bergamot is a favorite!), weighted blanket, books, drawing supplies, and a chin up bar for meeting their bodies’ need for heavy physical work. When we travel, we bring some of these items with us and set up a safe space for them there even if that safe place is in the car.

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We spend as much time outside as we can. Outside is familiar and safe to our kids. Noises are less intense outside of the confines of four walls, and there is plenty of space to spread out. Climbing, swinging, and running help their bodies feel grounded, and in imaginative play they regain a sense of control and direction.

And finally, we adjust our expectations. We know this is a really hard time for our kids. We know this is a really hard time for us trying to navigate and meet our kids needs with my husband working round the clock during his busiest work season. We try not to picture perfect Christmas gatherings and set ourselves up for disappointment. We know we are all doing the best we can. We are continually trying to adapt the season to be less stressful for us, but in the meantime we focus on loving each other through it and know we’ll recover together.

As we go through these final days of preparation and move into days of celebration, these will be the things we focus on to help our children find balance in the chaos. Each year, we try to fine tune our approach in the hopes that we won’t spend two months recovering from two weeks of supposed “holiday fun”. I’m already keeping notes for next year so that we can be intentional with our plans. We find in daily life that some limits give us and our children the freedom to explore and enjoy ourselves. The holidays are no different. We can’t celebrate Christmas the way much of culture thinks we should at the expense of our children. We can embrace the specialness of the season without throwing out all of the things that ground our kids.

What do you find works to help your family, and especially your kids, find balance through the holidays?

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Now, because I can’t help but share this, here is a reminder after all the chaos is through to keep the meaning of Christmas with us all through the year… (B is at the mic, and E joins him… from their school holiday program).

 

Monday, December 2, 2013

Highlight Reels and Real Life

Advent is here! We spent the weekend recovering from Thanksgiving chaos and getting ready to be hurled into Advent. I rushed to get our Advent calendar and other traditions together to start on time.

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We made it to church, and my boys randomly decided to wear their Easter best. They were ridiculously good during worship.

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I shoved the boys outside to play so I could finish the Advent Calendar. I love this Advent Calendar. Each year, I change out a few activities and keep old favorites. The boys love to open the envelope each morning to see what we’ll do. Details on making it and our activities can be found at Advent Calendar 2012 and Advent Calendar 2011. This season is so stressful with my husband working nonstop and the normal holiday preparations that the Advent Calendar helps keep us focused on fitting on some of our fun and meaningful activities amid the busyness.

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We did our first Advent Calendar activity making Christmas garland covered in things we are thankful for like dogs, organizing, singing, Christmas lights, and more!

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We lit our family Advent wreath and read the accompanying devotion from We Light the Candles.

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And, we read the first day of our Advent Storybook (I love this book btw! It’s such a simple, short easy tradition and it’s a beautiful storied journey to Christmas.)

Great, right? I happily shared pictures on Instagram and my personal Facebook page of my accomplishments.

Then I got a couple of messages asking where I find the time and telling me how amazing I am to have this all together. I cringed. True, scanning through my timeline, it looks like a perfectly orchestrated start to the season. But as usual, social media doesn’t show the whole picture.

In between the snapshots of boys all dressed up for church and my advent calendar finally hung and ready, real life happened. This real life was filled with boys who are still trying to recover from the sugar and chaos of Thanksgiving. They are cranky, tired, and oversensitive. They are fighting constantly. It was filled with dirty dishes, a stressed out mama trying hard not to have a panic attack with the onslaught of Advent, and marbles that I swear multiply every time we put them away so the next time they are dumped they wreak even more havoc. Every time I attempted to clean something up to make room for Christmas, something else got dumped. I bribed them with hot chocolate to go outside so I could just get the dang calendar finished. It was a messy, messy weekend. It took everything we all had to pull it together as much as we did, and in the end we lit our Advent calendars before eating our chinese take out dinner (that is full of gluten and therefore makes me sick every time we get it).

At the end of the night, as exhausted as I was, I love looking at that social media highlight reel of my day. It reminds me of the good. My younger son has a tendency to dwell on the negatives (no idea where he got that from… ahem… yea okay I do). At bedtime, we let him voice his frustrations and validate those feelings. We all need to be able to process the rough parts of our day. But, we always end by sharing gratitude for our favorite parts of the day. It doesn’t mean the bad ones didn’t happen, but it helps refocus all of us to thinking about them as bad parts and not as if the whole day was bad. That’s what the social media highlight reel helps me do at the end of the day.

I know I’ve talked about that highlight reel before, but as we go into a beautiful, stressful, and emotional season I think it needs repeating. When you see someone’s beautiful day on Facebook, remind yourself that real life was lived in between those snapshots. When you’re feeling like you’ll never be ready and Pinterest just keeps showing you all the other things you should be doing, walk away and know that no one is doing it all. Don’t let comparison steal your joy this season, and don’t let comparison dig you into a deeper hole than you already are in if joy already seems like a stretch. And maybe, snap a picture every so often for your own highlight reel to make sure to remind yourself of those moments at the end of the very long days.

Give yourself grace. Holidays can be beautiful and wonderful. They can also be heartbreakingly hard. Whatever yours is this season, or even just this day, it’s okay. You’re doing the best you can, and it’s better than you think. I’m sure of it.

 

Some past holiday posts:

Advent Calendar 2012

Advent Calendar 2011

Ditching the Naughty and Nice List: A Faith Perspective

Santa: Let’s Play Pretend

My Kids Remind Me to Choose Joy

Christmas: A Season of Giving

Tuesday, November 26, 2013

Our Stories Matter: Regina and Luke’s Story

Life is so incredibly full these days . I shared on Facebook already, but I’ll make it blog official too!

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Our family is growing! My pregnancy is going well, and I will write more about it in the weeks to come.

But right now, I am really excited to share a friend’s story. November is Diabetes Awareness Month, and over the past few months I’ve had the privilege of learning more about parenting a child with Juvenile Diabetes. If you don’t already know, Juvenile or Type 1 Diabetes is very different from Type 2 Diabetes. One of my son’s classmates has juvenile diabetes, and his mother works at the school. I work with her during my hours there, and I watch as she helps her son navigate the world safely. I watch as she strives for a tricky balance between encouraging her child’s independence and knowing that she absolutely needs to be there or nearby to keep him safe. When I cringe and agonize over the sugary treats that come with school parties, I know that she’s struggling even more. I know that as Luke gets older, she and her husband will equip him to confidently manage his condition, but in the meantime, it’s a round the clock job for mom.

Regina is beautiful inside and out, and she handles this parenting gig with grace and humor. I’m really excited that she’s agreed to share her story here, because it matters. Our stories as mothers matter. It’s in knowing each other’s stories that we are moved to grace, empathy, and compassion in moments when we might otherwise be tempted to judge. When we share stories together, we open our hearts and we break down walls so that we can support one in another in this crazy thing called motherhood. Because as I’ve said before, mothering is hard, but it’s a whole lot harder if we think we’re doing this hard thing alone.

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This is Regina’s story.

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My Perfect Imperfect Little Life: Our journey with Type 1 Diabetes

I will never forget the day we heard the words, “Mr. and Mrs. Goldy, I’m sorry to tell you this, but it’s very likely that your son has Type 1 diabetes.” We listened to the emergency room doctor as he was telling us that Luke, our ten month old baby boy, had sugar levels over 700 and how normal is anywhere from 80-100. He explained that his PH levels were off and that his blood was acidic and how that would explain the many symptoms he’d been displaying over the last several weeks. Tears were streaming down my face and I asked innocently, “will he outgrow this?” The doctor explained how you cannot outgrow Type 1 diabetes. He tried the best he could to comfort us and assured us that we brought our son to the best hospital. About an hour after admission our baby was sent to ICU where he was treated for Type 1 diabetes, hydrated, and given insulin. His body was limp, as it had begun shutting down. Seeing him hooked up to all of those machines just broke my heart. He was so dehydrated that it was hard for the nurses to find his little veins. I wanted it to be me that they were poking. Although I knew it was what had to be done, it sickened me. My husband and I were scared, but determined to face any challenges diabetes held head on, together.

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In the days that followed we received a crash course in type 1 diabetes. We learned what the disease is, how to test blood sugar, fill a syringe, inject insulin, count carbs, what to do when blood sugar was too high or too low, what ketones are, how to log, how to cope, etc. What we didn’t learn was how to live with it once we got home. We didn’t know just how life changing it would be and how every single second of every single day would revolve around our son’s pancreas. We became his pancreas. Type 1 diabetes is an autoimmune disease which means Luke’s pancreas doesn’t produce insulin anymore because something caused his body to attack itself. From this point on for the rest of his life his blood sugar will need to be tested multiple times a day and he will receive insulin for his survival because his pancreas doesn’t work anymore.

After three days in the hospital we went home, were reunited with our two year old son Sam, and began our “new” life. We were flustered every meal because we knew that meant testing and drawing up the appropriate amount of insulin. Try to imagine getting a ten month old to eat exactly thirty grams of carbohydrates every meal while also ensuring those are healthy meals he’s eating and not junk. Then try imagining a two year old fighting for your attention while you are trying to calculate, log, inject the insulin, and get the ten month old to eat everything in the dish so his blood sugar doesn’t go too low. It literally has taken us years to adjust to this new way of life. Living with type 1 diabetes can be compared to living life on a rollercoaster. We have our good days and our bad.

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One thing any parent can relate to is the loss of freedom. Most of us feel a loss of freedom because once you have children your life changes drastically and you can’t always go where you want when you want.  Nights out usually mean getting a babysitter or relative to watch over the children. A parent of a type 1 diabetic however, can’t just call any babysitter or relative to come watch their child.  Unfortunately finding a babysitter is very difficult for us because this means testing and treating is required. And unless you do it all the time, it could make you uncomfortable and us a little nervous about leaving our little one in your care.  In our case, only one of our mothers is able to test and treat, and none of our friends really know how to test or treat either. Luke has never spent a night away from us. If I plan to go somewhere at night, I am most comfortable if my husband is home and if he is away or out, I am the one home. Nights out as a married couple are few. When we do go out it’s only for a two hour period because we feel the need to get home for the night time check. We test around the clock which is necessary because Luke is still young and there have been times when his sugar has dropped in the middle of the night. So our social life isn’t like it once was. And though I am really ok with it, there are times I envy the ability others have to just hire a sitter. There are times I envy that freedom. 

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We have learned that although we can’t change certain situations, we can change our attitude and how we deal with them. For example, parties and holidays can be stressful because there is the added anxiety of not knowing what food and drink will be served, what kind of cake it is, and if there is going to be candy in the goody bags. Though it is true that a Type 1 diabetic can eat almost anything as long as it’s treated with insulin, we have found that there are many foods that are more challenging and can negatively affect Luke’s blood sugar such as pastas, pizza, cake, cookies, bagels, and bread. Many of these are staples at children’s birthday parties or holiday celebrations. Unfortunately, even when treated with the right amount of insulin some of these things can spike Luke’s sugar level and without careful observation could cause a dangerous low afterward. So I test more frequently at parties and on holidays because I do allow my children to eat some of these things on special occasions. Yet, you may also find me frazzled, raising eyebrows, maybe even getting teary eyed because it is in circumstances like these when the disease disheartens me the most. It is in these instances when Luke is among his friends, and they are laughing and playing and eating whatever is being served that the disease seems to be on my mind the most. I’m doing my best to find a balance between something dangerous for Luke’s health and letting my son just be a kid.

Things don’t always go as we plan, and my journey is not quite the way I envisioned it would be. It’s far more challenging but far more rewarding too. In the trials we encounter, we find our true strength and purpose. Every day I am thankful for the gift of motherhood, the gift of a wonderful husband, and the gift of two beautiful boys. Would I change any of it? I would not. It’s perfect in its imperfection.

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I want to thank Regina for sharing her story, and I encourage you to learn more about Juvenile Diabetes. Regina and her husband are continually raising money to support research and the hope for a cure, and you can find their fundraising page here.

We’re all in this together, and we all face our own challenges. So often we have no idea of what those challenges may be as we pass moms at school pick up, the grocery story line, or soccer practice. The more remember that as we’re out in the world, the better place that world will be.

Sunday, November 10, 2013

Overcoming the fear of falling… or failing.

It’s a rare quiet moment in this house. The boys got a little extra sleep last night after weeks of night waking and very early mornings. They are content digging through craft bins and creating masterpieces while they quietly sing to themselves. I have no doubt it won’t last long, but I am filled with gratitude for this moment. I am filled with gratitude for their contentment, something we don’t see often enough around here.

I think I am more acutely aware of the moments of simple and profound joy because of our struggles. A few weeks ago, my first grader learned to ride his bike without training wheels. It’s an exciting day for any kid – the joy, the pride, the freedom. It was definitely all that for B. Just a few months away from his seventh birthday, most of his friends were riding confidently on two wheels, and I think B could have been some time ago. But he was scared. He was scared he wouldn’t be able to do it. He was scared of falling, yes, but more so he was afraid of failing.

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When B gets an idea into his head, his anxiety takes it and runs with it. It grows so large that he is constantly in a state of fight or flight not knowing which to do. For more than six months, B refused to even try to ride his bike without training wheels. When you mentioned it, his whole body would tense and he’d get very angry. He didn’t know what else to do. He had to protect himself from the fears.

So a few weeks ago, I suggested that B take to the really big hills surrounding our house on his balance bike. We’d taken a slightly smaller bike and removed the pedals so he could practice his balance. Up until this point, it hadn’t done a lot of good. We’d spent years telling the boys to not take anything with wheels down our steep driveway or the front or back yards. They are fierce for sledding but a recipe for stitches and broken bones with small boys on wheels. He was bigger now, and I thought it was worth a try.

B wasn’t sure about my suggestion but he hesitantly put on his helmet and grabbed the bike. He started on smaller hills and quickly got to bigger/steeper ones. I stood to the side cringing pretty sure he was going to topple over the front of his bike on the steepest ones, but I was thrilled he was taking the risks and figuring it out. Finally, he figured out he could go down the long hill of a driveway in the church parking lot and with the momentum continue to ride around at the bottom. His balance was perfect.photo 2

The next day, his Dad tentatively suggested they try the two-wheeler with pedals. They took it over to the church parking lot not sure how it would go. We all knew B could do it, but we weren’t sure if he was ready to risk falling/failing. My husband was getting our younger son set up on his tricycle before helping B, and before he could finish he turned around to see B gleefully riding circles in the parking lot. I was inside cooking dinner and got a phone call to come outside so B could show me something. I figured he was riding the bike, but honestly nothing could have prepared me for what I saw.

There B was, confidently doing figure eights across the parking lot. He looked like he’d been riding for months, but the truly breathtaking part was his joy. He was absolutely cackling with joy as he pedaled his legs as fast as he could. I could hear it across the parking lot, across the yard, from my front porch. His joy filled the air and turned everything it touched. The sun shined brighter. The grass was greener. I could feel it in my toes. With tears in my eyes, I was grinning so hard my face hurt. It wasn’t that my boy was riding a 2 wheeler. That was cool. But really, it was that he had taken a risk, he had pushed his anxiety aside and tried something hard, and the resulting pride and joy were so big he couldn’t keep them in if he tried.

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I recently read an interview with Sara Blakely, founder of Spanx. I was drawn by its title:

Billionaire Sara Blakely says secret to success is failure

She explains in the interview that every week her dad would ask her, “what have you failed at this week?” He would high five her failures as much as he would her successes. If she didn’t fail at something, it meant she wasn’t putting herself out there enough. We’ve all heard that failures are learning opportunities, stepping stones, and all that. But I just love this idea of truly congratulating ourselves when we fail. We tried something hard. We put ourselves out there. It didn’t work out, but it meant we weren’t sitting at home twiddling our thumbs or hiding under the covers.

I hope I can share this with my kids. I hope I can give them an example of being brave, putting myself out there, and not letting a fear of failure win. There’s a beautiful resilience modeled in the applause of failure. I think I will start by asking myself
“what have I failed at this week?” in the hopes of showing my boys while they are young that not only is it ok to fail but it’s a sign you’re living life out loud and equipping yourself for success.

So, what have you failed at today?

Wednesday, September 18, 2013

Finding Rhythm in the Whirlwind and Sharing Some Resources

If you’re new here, welcome! Take a look around. I’m glad you’re here! New posts are coming soon...

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It’s been so long since I’ve written in this space. This summer was a whirlwind juggle of motherhood and vocation as I traveled the state with a team of camp counselors (different team each week) providing summer day camp experiences at churches, bringing outdoor ministry to the local communities. It was a beautifully exhausting summer full of lessons of love, grace, and courage. My head is still spinning and processing it all.

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Right after we wrapped that up, we headed to the Outer Banks of North Carolina for 10 days of family vacation. Wonderful. It was so great to be together as a family with nothing else to do but be together after a summer of chaos.

By the time we got back from vacation, school had already started and we were thrown into that whirlwind. We are still trying to find our routine with a full-time first grader and a half-time preschooler, Occupational Therapy, soccer, me volunteering at the school often for tuition trade, and whatever else life throws at us.

And then more beautiful chaos happened. Dear Parents with Young Children in Church went up on the Huff Post on Sunday and was the most shared article on Sunday! Crazy. Monday morning, while packing school lunches and begging my kids to just get dressed already, I got an email at 8:10 about doing HuffPost Live at 10:35. My first thought? Guess I’m going to have to shower and blow dry my hair. Ha!

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Thank you all for your support with this post. Thank you for sharing it and republishing it. Thank you for the messages you’ve sent me sharing your stories. I feel so blessed to connect with you all.  And thank you for not wildly making fun of me on video, at least not to my face.

I’ll be back soon with more posts. We are really being challenged with this new rhythm of life and my son’s anxiety. I’m just finding the words to share. But in the meantime, I have two fabulous FREE opportunities to share with you.

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We know motherhood can be hard, but it’s only harder when we think we’re in the hardness alone. You’re not. I am so excited to join 27 other amazing mamas on a mission to uplift and encourage mothers around the world.

Awakening Wonder: Discovering Delight in Everyday Moments is a free inspirational ebook designed to help brighten your day as you reconnect with the beauty all around you.

It was really fun to contribute to this project, and I’m enjoying reading all the other contributions. I invite you to come claim your free copy right here: http://www.raisingloveliness.com/awakening-wonder/

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Next, I have this FREE opportunity with my friend Dawn Trautman.

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Dawn is a dynamic and engaging author, life coach, and performer. She offers e-courses, one-on-one life coaching, and an interactive online group to not only motivate and inspire you but to help you focus and harness your motivation and inspiration into positive action in your life and the lives of others. I’ve been blessed to be a part of many of her e-courses, and I’ve enjoyed the conversation, the process, and the clarity they’ve provided.

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On Thursday Sept. 26 at 8pm EDT, she’ll be hosting a free live web event called Why You’re Not Living Your Calling and How to Start. Dawn describes this event as:

A high-impact web event to help you live your calling.

Knowing your purpose in life is one thing, but actually living it is another thing. In this one hour, free, live online event, we'll explore the most common things getting in the way, and share proven, concrete strategies to avoid them so you can live every day with purpose and passion.

You can sign up via her website and you can also find her on Facebook.

Disclaimer: I don’t normally advertise on this blog, and I am receiving nothing in return for these two plugs. These are just free resources and opportunities I wanted to pass on! Who doesn’t love free??!

I’ll be back soon with more to say… have a great week!