Fear, transformed

Sometimes when I read something I feel an overwhelming urge to share it with others. When I get excited like this, I'm often disappointed by others reactions. I suppose I hope that the words on the page will speak to others like they have to me. Today this spoke to me... And I'm choosing to share it here so I don't have to be disappointed by your reaction. So humor me and dig deep. What do you fear that could be turned around? 

“Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage. Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.” 

― Rainer Maria Rilke, Letters to a Young Poet

Giving in

I have been resistant to many things lately. Here is a short list:

-Sleeping.

-Letting go. This is true at home and work, but mostly at work.

-Writing blog posts about complicated stuff. I have things to say, just not the time to sort out my thoughts. Mostly about our family's journey to real health. I'd like this journey to mean real answers for Jillian, even if it takes time. The time is passing any way, so we've decided to be as proactive as we can. I hardly believe sometimes that she's only two and a half. It seems we've done so much in her short life. Chris and I have disagreed about some things during this journey, but we both ultimately want our family to be as happy, healthy and as REAL as possible. For us this means we have started eating whole, natural foods. Here's a shocker: I cook! And as little as possible comes from a bag or a box. That's right.

So now you may be wondering if I believe that what I feed Jillian affects her health.And the answer is ABSOLUTELY.

We started this journey in September. Jillian had a wonderful, healthy winter. Lucas, who usually has a cough and runny nose all winter long, did not. Chris and I have more energy to get things done around the house. This has lowered our stress levels and overall has just made things better. Has it all been great? Of course not. It's hard to plan meals, go shopping and discipline myself to make preparations nightly so we're not eating at 8:00 every night because I chop a bunch of vegetables after work. Simon hates everything I make... especially anything smooth like soups or smoothies. He is the first one to say, "I don't like this," and the first one to take his bites and leave the table.                    

None of Jillian's doctors will speak about nutrition as a part of her treatment plan other than to say, "make sure she eats balanced meals." What a loaded statement... So we are taking Jillian to see a holistic pediatrician in Ann Arbor this month. And before you ask, no, I don't think we can heal her by seeing this doctor. All of her doctors seem to agree that whatever autoimmune disorder she has, it will run its course despite the medicine she takes or the food she eats. But we have seen her symptoms decrease and her overall health improve by making small changes in the foods we eat, the products we use on our skin, etc.

That about sums it up. That was supposed to be short and sweet...not long and complicated. It took me two days to finish this post. So applicable to everything in my life...

Jillian is currently having a flare up. A flare is just an increase in her symptoms--usually fever, rash and lately joint pain. Flares can be caused by the disease itself or triggered by something else. Jillian currently has a runny nose and a cough, so it's fair to say this episode was probably triggered by something viral. Sometimes symptoms include vomiting or diarrhea, but not often. Her newest symptom is purple hands and feet. Most of the time when her feet turn purple they swell and she will refuse to walk.

Usually when J flares Dr. Rheumatology's response is an increase in medication. We know the Humira she is currently on is working--but not with the current dosage. Usually we give her shots of Humira biweekly and Methotrexate weekly. A few weeks ago when she had a flare Dr. Rheumatology asked us to increase her meds. For four weeks, we did weekly injections of both Humira and Methotrexate. Last week was her first week off of Humira and we were supposed to resume her normal dosage of biweekly shots yesterday. She came down with a fever Thursday night and a rash and joint pain Friday morning. Dr. Rheumatology will not increase the Humira to the dosage she needs because she is too little.

So now we will be changing medications. We're never quite sure what this means. I believe it means we will continue the Methotrexate and replace the Humira. The new med requires infusions. When I was speaking to the nurse on Friday she kept referring to "infusions" as if I knew what they were. I finally naively asked her if an infusion means a shot. Of course not, because that would be easy. An infusion is a 4-6 hour visit to DeVos while the medicine is administered intravenously. The good news is that after the initial doses, I believe it only needs to occur every six weeks.

Jillian was recently evaluated by Ottawa Area ISD's Early On program and qualifies for speech services. She starts speech therapy on Monday. We are thankful for competent, loving professionals so close to home. Helen DeVos Children's Hospital houses all of the specialists that we see. Currently that number is four, but all together Jillian has been evaluated by nine different specialists from two different hospitals.

An early opinion by an immunologist we saw was that Jillian would just grow out of it. I don't believe her doctor's think that anymore, though they would never commit to such a statement. During much of this journey we have felt we are being kept in the dark. Doctors cringe when I start a question with "I read somewhere..." but if I don't read, I don't know what questions to ask. One of my biggest frustrations is there is no diagnosis. Other mothers that I talk to share my frustration, although my male counterpart does not, and so I read in order to quell my concerns. Here are some good articles I've bookmarked about the reaching a diagnosis and information about the use of medications.

I often feel bad that so many of my posts are about Jillian. The boys have much going on, too. I will post soon with updates on everyone. I keep notes in my phone when Simon says something comical or Lucas makes a Lucas-kind-of-observation. All of our children bring much needed color and light to our lives, especially when things seem dark and questions are unanswered. There is never a dull day in the Dattels' house!

Part Two

A friend emailed me last week about Part I. Looking at the date, I realized that it has been over a month and I haven't written Part II yet. Someday, my life will again be my own. Just not today... 

Another friend asked me at Christmas time what I get for the kids stockings. I honestly told her junk. Stocking stuffers are the last things I buy and it's easy to spend way more than I meant to, so I would often go the dollar store and just buy crap to fill the stockings. It excited the kids to open it Christmas morning, but they would either play with it once or not at all and I would just end up throwing it away.

So this year I decided to be intentional. 

Being intentional at Christmas meant buying stocking stuffers I knew the kids would use--legos and crafts for the boys and a few toys for Jillian. It meant the stockings were far from full. But it's also meant I've not thrown away a single toy or gift from Christmas. Sweet.

If you've visited or talked to us recently, you may notice that being intentional has contributed to some pretty significant changes at our house. Most of the changes have to do with the food that we eat. But I'll get to that in a later post.

I have written about my daily struggles with balancing home and work. It is so easy to get caught up in the all the stuff that needs to be done. I tend to perseverate on the whole of a task--laundry needs to be washed, dried, folded and put away before I consider progress has been made. And it drives me nuts when I can't get one load done that way in a single day, or I can't complete all 10 of my loads in that way during the weekend. Trust me, I've tried. I just can't get it done.

I've realized over the past few months this is a mindset I take on frequently. And it is not helpful. Or even true. But it's so easy to believe. So I've decided to ditch this mindset. That's right. I decided. That's it.

There's been a number of blog posts and articles I've read recently that I totally resonate with. Rather than try to explain things in my own weird and often overly detailed way, I've linked to the articles below.



Read them. Breath them. Believe them. Live them.



Read about being intentional at work here.

Read about being intentional with your kids here.

Read about being intentional in regards to others here and here.



Hmmmm.. Now think.



I had a wonderful conversation with someone I work with a few weeks ago that also resonated with me. In fact, I can't get it out of my head and I've already shared it with several people. He told me the best we can do as parents is throw mud and hope that it sticks.

How's that for being intentional?

And so I do. From the choices I make about the work I bring home, the time I spend with my kids, and the examples I set for them when I speak or interact with others. They are watching. And I hope the good stuff sticks. I know I'm not perfect. In fact, Simon uses one of my favorite expletives more often than I am willing to admit here, but I am present. I am fully aware of the choices I make, even when they are bad ones.

For the record, this is hard. I remind myself daily of my desire to be intentional. If I don't, I am easily caught up in the stuff of every day. But my kids are worth it. Chris is worth it. I am worth it.

Part One

I took all the kids to a dentist appointment this week. It was a typical Dattels' Adventure.

The schedule:

3:30 I leave work.
3:45 I arrive home.
4:00ish Lucas gets off the bus.
4:15 Dentist appointment across town.

Sweet. That was the day we had a "winter advisory" for 3-5 inches. The roads were wet, sloppy and unplowed. Welcome to West Michigan.

Because of the roads, the bus was late. Lucas either doesn't hear well or chooses not to listen, so I had to call his name five times before he changed directions to head toward the garage and not the front door. Slower than molasses. I had forgotten to prepare him for the appointment that morning... so he had to ask exactly 21 questions before he would get in the van.

I glanced at my phone. It was 4:11.

I realized while loading the other kids we did not have a car seat for Jillian. Chris took the boys to Chicago last weekend and all the car seats were moved around. I realized it five minutes after the babysitter backed out of the driveway. She has extra seats. I did call Chris who started a new job two weeks ago at his new place of employment that is a ten minute car ride away. I think I was hoping, I don't know, that he could throw me a car seat... or something...

I strapped Jillian in Lucas' seat and Lucas sat in a regular seat with a regular seat belt. You'd think he would be excited, but he knows this is against the law. He was afraid he would go to jail.

As I drove white knuckled across town to the dentist office, Lucas asked questions.

"What are those bricks?" he asked as we passed a cemetery. I explained that people are buried there when they die.

"Do kids die?" he asked. I told him yes. He asked how. I gave some examples. I cringed as I mentioned that sometimes kids die in car accidents... imagining that I was writing my own story... that I would be shamed, judged and crucified by the media when details of the accident were released via the Freedom of Information Act. And then my only living child, Simon, would be removed from my custody. And I would be charged with something. Sentenced to prison.

At 4:20 I called to tell the receptionist we were running late.

T R E M E N D O U S   P R E S S U R E.

All for clean teeth. I hope our dentist reads this so he knows how much we value good hygiene.

For the record, I realize this was probably not the best option. I also realize that our pediatrician would definitely NOT approve. That being said, here is a list of "pediatrician un-approved" parenting choices we've made over the years:

• Two of our kids were stomach sleepers. Lucas was the only one we tortured by insisting he sleep on his back. All. The. Time. 
• Hotdogs were a staple finger food. 
• We bought our first car seat at a garage sale. 
• My kids slept with blankets in their cribs.  
• I let the kids have popcorn occasionally once they had teeth and could chew it. 
• All three of my kid's car seats were turned around before the recommended year birthday, 20 pounds or two year birthday in Jillian's case. 
• All three of my kids occasionally slept with us. In our bed. 

There's more, but you get the idea. 

I feel tremendous pressure to be a picture perfect mother. I know others feel it, too, but I often feel very alone. I'm here to tell you I'm not the perfect mother. I experience many Pinterest inspired, Facebook induced failures when it comes to planning, organizing, creating, teaching and loving my children. I struggle every day with the balance between work and home. I yell. I'm lazy. I'm wrong. 

But, oh, how I love my kids. Chris, too. I remind myself every day that is enough. I strive for betterness, not perfection, every day. That is enough. 

I've been working on a blog post for a few months. It all started with a single thought and has grown into an ongoing, voluntary and self motivated pursuit of betterness. I don't know why I'm so scared to share it... I've decided I will break it up and write it down piece by piece. Hopefully, in smaller pieces, I won't be disappointed with what I write. That may seem like a silly reason to be scared about sharing a piece of writing, but I think that's it. 

Thanks for reading Part One. 

Lukis

Lucas has decided that his name, if phonetically spelled, should be written "Luke-is." Therefore, he sometimes writes his name with a "k" or an "is." He told me just this morning that I spelled his name wrong when I named him.

Freedom

Jillian started climbing out of her crib over Christmas break. We used the time off to set up a big girl bed. Free from behind the bars of her crib, here are her chosen sleeping nooks. The closet seems to be her favorite so far. She's slept in it multiple nights... She prefers the door to be closed. Oh, Jillian...

Thoughts to make you think

"When obstacles arise, you change your direction to reach your goal, you do not change your decision to get there.”
~ Zig Ziglar