Thursday, February 4, 2016

When there is no end in sight

My friend and I sat on little-kid library chairs and she shared how with all of the challenges in her days, it feels like there is no end in sight. I get this. I have without a doubt, been exactly where she is right now. Our individual challenges and experiences are different, and whether we talk about it or not, most of us have been at a point where the challenges seem unending.

I used to drag myself out of bed after a night full of Isaac screaming in my arms, only to wake up to what was bound to be an entire day of him screaming in my arms. I often thought I couldn't go on. And I fell into this horrible pit of darkness where nothing made sense and it was like my mind had left my body and my body was just going through the motions. Hold the baby. Feed the baby. Bounce the baby. Explain to yet another doctor that something is wrong with the baby. Drive to more appointments. Sleep an hour here, an hour there. Never enough sleep.



There are a few books that I feel have completely changed my life, one of them being, One Thousand Gifts: a dare to live fully right where you are by Ann Voskamp. My friends are going to say I am such a broken record because I swear I can bring everything back to this book. I guess it fell into my lap at just the perfect moment. I read it at a time when I was grappling with the decisions I'd made that had propelled me into becoming a wife and a mother. I read it at time when I desperately longed to run away and truly every single time I drove on the highway and passed the Marriott, I dreamt of checking into a room and not telling a single sole and being gone for days. I read it at a time when I felt like was letting down my toddler, and when I held a baby whom I loved with all of my heart but at the same time I feared becoming too attached because passing him off to surgeons was happening far too often.





So when I read: 

[...] I wake to the discontent of life in my skin. I wake to self-hatred. To the wrestle to get it all done, the relentless anxiety that I am failing. Always, the failing. I yell at children, fester with bitterness, forget doctor appointments, lose library books, live selfishly, skip prayer, complain, go to bed too late, neglect cleaning the toilets. I live tired. Afraid. Anxious. Weary. Years, I feel it in the veins, the pulsing of ruptured hopes. Would I ever be enough, find enough, do enough? [...]

It's the in between that drives us mad. 
It's the life in between, the days of walking lifeless, the years calloused and simply going through the motions, the self-protecting by self-distracting, the body never waking, that's lost all capacity to fully feel--this is the life in between that makes us the wild walking dead. (27) 

I knew that Voskamp was a gift to me and eventually her book helped bring me back to life. 

Now, this didn't happen overnight. As I said, I was in that pit, or, "the depths of despair" as Ann of Green Gables coined it so well. I didn't understand what God was doing to me and why He'd given me a baby I felt so detached from. But I began to take in earnest that "we only enter into the full life if our faith gives thanks. Because how else do we accept His free gift of salvation if not with thanksgiving? Thanksgiving is the evidence of our acceptance of whatever He gives. Thanksgiving is the manifestation of our Yes! to His grace" (39).  As a disclaimer, this doesn't mean I'm always thinking, "Yay, thank you so much for giving me a kid with a feeding tube!" or "Thank you so much for this day that sucked!" No. But I have learned to intentionally take even a fleeting moment to note the most subtle element worthy of thanks. 

Gradually, as the mind shifts perspective and thanks is given for the birds at the feeder, the squirrel performing acrobatics and making the kids laugh, the clothes smelling fresh even if they aren't put away, the scattered toys in remembrance of creative play, then we notice less what we feel our life is missing and more of what is present exactly where we are. Over the past four years this has been my challenge to myself. Some days I literally write down my list of thanks, and some days it's just enough to take note in my mind. Actually, I recently discovered a really great app just for this purpose. It's called, Grid Diary and you can choose from a list of writing prompts for each day, one of which is, "What am I grateful for?" and another related one is, "What are three good things about today?" I definitely suggest checking it out if you have a smart phone. I don't actually have a smart phone (but I use it on my iPod) since we're cheap and I also like leaving my house and being mostly 'unplugged' as they say. 

None of this easy. And the process is ongoing. Just last year I experienced one of the worst and longest bouts of depression I have experienced. Hence the major break in writing and photography. But I always like to have a toolkit in place for the times when things beyond my control take over. Just as I have my toolkit for dealing with Isaac's sensory processing disorder and one for Isabella's meltdowns and drama, I have one for my moments of despair and the times in my life when it feels like there is no end in sight to the exhaustion. We each have to discover what is essential to our toolkit and for me, Ann Voskamp is front and center. 

I think Ann Voskamp's approach is an extension of mindfulness. Dr. Patrizia Collard, author of The Little Book of Mindfulness: 10 minutes a day to less stress, more peace, defines mindfulness as "being aware of or bringing attention to this moment in time, deliberately and without judging the experience" (6). When Walter and I go on hikes I completely annoy him with my mindfulness jibber jabber: "are you being mindful right now? Did you notice the sound the leaves are making beneath your feet? Did you hear that bird?" 

I really appreciate that Collard includes "without judging the experience" in her definition. Far too often we get in the habit of running circles around our thoughts. I know I do. I'm going to share a Rumi poem that she included in her book. I think it's important, especially for Christians, because too often people think, "oh I shouldn't feel that because it's bad and I should be thankful." No! Feel it. That doesn't mean you have to become it. 

The Guest House

This being human is a guest house. 
Every morning a new arrival. 

A joy, a depression, a meanness, 
some momentary awareness comes
as an unexpected visitor. 

Welcome and entertain them all! 
Even if they're a crowd of sorrows, 
who violently sweep your house
empty of it's furniture, still, 
treat each guest honorably. 
He may be clearing you out for some new delight. 

The dark thought, the shame, the
malice, meet them at the door
laughing, and invite them in.

Be grateful for whomever comes, 
because each has been sent 
as a guide from beyond. 

Jalal Al-Din Rumi (1207-1273)
translated by Coleman Barks 

If you'd like to share, I'd love to hear what you keep in your toolkit for those tough days. The other life-changing books I've read are, Daring Greatly and Rising Strong both by Brene Brown. The rest of my toolkit is filled with my friends. I really don't know what I would do without such a strong support system.

Wednesday, February 3, 2016

My Growing Girl

We pulled into the library parking lot and got out of the car when Isabella ran back to her door saying, "hold on mommy, I just need to fix my hair." 

Fix her hair? When did this happen? 

She has a spray bottle full of water sitting by the mirror in her room, along with an array of hair brushes she regularly confiscates from the bathroom, my bedroom, and Isaac's room. She tells me she has to "flatten the fuzzies" and comes out of her room with the top portion of her hair slicked and definitely flattened. She doesn't let me brush it, and though her hair is thick, she only brushes the top portion. I told her her hair looked beautiful when she took one slim strand and wove it across the top of her head and pinned to the other side. 

She's always had a unique fashion sense. Mixing outrageous colors and patterns. Wearing impractical shoes for mud tromping and park playing. 

"Isabella, are you making mud pies?" 
"No! I'm making mud paint." 

And she proceeded to paint all of the porch railings. 

This is how she is creating her being. And I will not be the one to stop her. 

I love that she is bold and knows herself. When to do we lose our selves? When is the self taken by friends and influences and media? I don't know. I suppose it's a slow process. Maybe even beginning right now, as she wonders at taming the fuzzies on her head. But I know it is all part of the greater story and as the self is realized and reclaimed, the life-story is molded into being. For eight years she's been teaching me how to reclaim my self.  

I love that she says she likes walking a greater distance across the field and to the new location where I park the car and wait for her after school. In her words, "then I get to mumble anything I want, imagine anything I want, even talk really loud to myself because in school, we can't talk whenever we want." She runs outside in the morning to talk to "Mrs. Robin" and this makes me smile because I talk to birds, too, and why shouldn't we? 

Mary Oliver wrote in her poem, Invitation, 

Oh do you have time
  to linger
     for just a little while
          out of your busy

and very important day
  for the goldfinches
     that have gathered 
          in a field of thistles

for a musical battle, 
  to see who can sing
     the highest note, 
          or the lowest, [...]

My wish for her in this fast paced world, is to always "have time to linger". 









Oliver, Mary. "Invitation". Red Bird. Boston: Beacon Press, 2008. 18-19. Print.

Wednesday, October 14, 2015

Medical Complexities and Changing Opinions

Over the past couple years I've been joking with Walter that I am going to become a dog trainer. And he has joked back that I'm not allowed until Stella is a "good dog" (see previous post). I looked up the requirements to attend The Academy for Dog Trainers and found the essay question each applicant must answer. At first it stumped me but it didn't take long before I knew exactly what I would write about if I were to complete the application process.

Below is the essay question and my response, which exceeds the 300-500 word limit, but for the sake of this post and my personal interest in the importance of this question, I am choosing to flesh this out in detail.

We’ve all had the experience of holding an entrenched or strong opinion and then changing it, sometimes as a result of gradual reflection, persuasive arguments made by others, epiphany or a combination of factors. Describe a time when you changed your view about something. How did it come about and how did it change you? Your experience can be about any subject (not necessarily dogs).

I grew up going to La Leche League (LLL) meetings with my mom. LLL is an international organization devoted to helping and supporting breastfeeding mothers. To say breastfeeding was a big part of my life is an understatement. I'm not even sure when I realized that another form of feeding for infants even existed, but I was significantly older that most. My mom was (actually still is) an LLL Leader, which meant she was devoted to counseling struggling mothers through the process of breastfeeding. This also meant our home phone rang off the hook with crying mothers on the other end of the line. I remember a little pepto bismal pink message pad at the ready by the telephone and my sister and I were given detailed lessons on how to properly answer the phone and take down messages. 

When I was pregnant with Isabella I didn't even consider an alternative to breastfeeding. My husband didn't consider an alternative either, we didn't see any necessity for formula and it was clearly written out in my birth plan that Isabella would not be given a pacifier or bottle, and would be put to the breast upon delivery. I'd even been attending LLL meetings in Kent, Ohio as an expectant mother and I couldn't wait to enjoy a magical breastfeeding experience with my daughter. 

Nursing Isabella was hard right off the bat. And I began to understand why people choose to replace the breast with a bottle. But I was determined and I stuck with it and got through the hard part. And nursing Isabella was magical. I loved nearly every minute and enjoyed lazy afternoons snuggling my infant and feeding her the world's perfect food. Not only that, I was enthralled with idea that my body was not only able to grow a baby, but it was more than capable of providing her with perfect nutrition for the first year of her life. As someone who struggled with an eating disorder and previously felt completely uncomfortable in my own skin, this was an incredible experience and extremely healing for my body and my soul. 

Fast forwarding a little bit, I went through the process of becoming an LLL Leader and within a year I was leading meetings and counseling other women. I felt strongly, actually, I was even hardheaded that breast is best and formula is evil. Isabella never had a bottle. We didn't even own a single bottle. 

Let's fast forward a little more...to Isaac. 

Isaac was born and the dreams I had of recreating my experience with Isabella quickly dissolved, no actually, they were smashed, with a giant hammer and then shredded with a chain saw--how's that for imagery? 

Breastfeeding Isaac was miserable. He cried. No screamed...all hours of the day and night. There's this lovely moment after a satisfying feeding in which the baby unlatches and some breast milk dribbles from their mouth and they look completely drunk on love. Yeah, that never happened with Isaac. Nursing him was miserable, living with him was miserable, trying to get sleep while living with him was miserable. You get the idea. We blamed most of this on his need for the upcoming craniofacial surgery. I was convinced his head shape was giving him headaches and that after surgery and recovery we would be back on track. Surgery came and went and several months later Walter and I were having a meeting with the pediatrician about Isaac's lack of growth and weight gain. I was furious and I felt like a failure. The doctor (who has since apologized) blamed breastfeeding even though by that point I was on a stressful and exhausting quest to find out what was wrong with my baby. I knew in my heart it wasn't breastfeeding and I was determined to continue providing my son with what I felt was the very best nutrition. 

Nine long months later, Isaac got a g-tube. I angrily breastfed him until he was fifteen months. I say 'angrily' because it was never enjoyable and by this point he had a slew of doctors and was in feeding therapy slowing gaining one ounce after another. We went from not even owning a bottle to trying to get Isaac to take any number of bottles on the market. 

The puzzle pieces of his diagnosis gradually came together in a painful process and by this point I was stepping away as an LLL Leader. Going to meetings was hard and I usually went home feeling sad and frustrated with my own situation. Mothers at meetings were worried about how often they should nurse their baby and it seemed so trivial compared to what I was going through. All I wanted in the world was for my baby to be satisfied by breastfeeding. Not only that, but formula was on the horizon for us. And admitting that to those around me, to my entire community of friends so devoted to breastfeeding, was daunting. 

Unfortunately, g-tube = formula. That is beginning to change a little and I can share more in a different post but when your kid goes into surgery for a g-tube, they don't leave without a prescription for formula. Within a matter of days, I went from feeding my baby the most natural meal on earth, to the most artificial. But guess what, he literally wouldn't have survived without formula. Isaac had long been diagnosed as failure-to-thrive, which is a stab in any mother's heart, and he needed medical intervention in order to have any chance at reaching his greatest potential. By fifteen months old, my son wasn't walking, crawling, babbling (let alone talking), and the future looked grim. 

Isaac still has a g-tube and at this very moment I have three boxes of canned formula in my kitchen. And yes, I still blend real food meals for Isaac, and he does get the packaged Real Food Blends created by a brilliant mother on the quest to change what the standard of enteral feeding looks like, but pretty much every day Isaac has formula. And you'd better believe that every day I am thankful for that can of Organic PediaSmart. 

I am no longer an LLL Leader. I resigned shortly after Isaac got his g-tube because it was too hard emotionally for me to attend meetings. But I have an incredible group of friends that grew out of LLL and their support along this journey with Isaac has been unwavering. Walter and I still believe "the breast is best" but we also believe that formula has made our lives, and the life of our son, so much better. With sincerity, I now understand why some moms just don't want to breastfeed at all, why some babies need formula, and why some moms may want to breastfeed but due to medication or medical issues, they are unable to make that choice. Ultimately, formula exists for a reason. Those of us who are LLL or breastfeeding supporters, can hold strongly to the opinion that breast milk is the perfect nutrition, but we shouldn't bash the need for formula and a mother's choice to choose what is best for her, and her baby. 

Isaac is no longer diagnosed as failure-to-thrive. It has taken a very long time to remove that diagnosis and I am thankful that there are many ways we can provide nutrition to the medically complex child. I am also thankful for my many experiences and opportunities for growth that have come from raising a medically complex child. I have learned that it is okay for previously steadfast opinions to morph. As a result, I am more capable of supporting other mothers in a loving and thoughtful way. 









Tuesday, October 13, 2015

Good Dog

I've been thinking about what makes a dog a characteristically, good dog. Spoiler alert: I don't have an answer. So it's your choice if you waste your time reading this post.

Now that we are raising a puppy, it is quite obvious that dogs are very similar to children. For example, Charley (our five month old German Shepherd Dog), takes things without asking then tries to lie about it (conceals stolen item in his mouth until he is out of sight), gets far too excited about meals (have you ever seen how desperate a toddler gets at the thought of a cracker--it's mind boggling), rips up paper, invades personal space (every kid I've ever known--except Isaac) and likes to explore disgusting items, like trash (this is comparable to my kids trying to drink their bath water).

So what do we do with these disgusting and out of control creatures? Redirect. It's pretty simple. But it's time consuming.

There's a reason everyone is told to "baby proof" the house as the baby gets older. Those computer cords you think are boring and hidden from sight, are readily sought after by the curious toddler. Disappointingly, some parents choose to swat the curious toddler's hand every time they reach out to touch a cord or that important piece of paper left on the coffee table that you're too lazy to move. What does this teach that toddler? Fear, and exploration is a negative experience.

I'm still learning a lot about dogs, but I think it's pretty similar. Swat the dog on the mouth every time it gets mouthy, whack it on the hind quarters when it goes after something enticing, knee it in the chest when it jumps. What does this teach your dog? Fear, and exploration is a negative experience--and human hands are not to be trusted.

I didn't know much about dog training when we brought home our now ten year old rescue dog, Stella. It didn't take long before Stella was banned from my parents house for stealing an entire pork loin off the counter followed by an expensive apple tart from the local bakery. How could she possibly resist such a tasty meal? I'm pretty sure Stella's stomach is lined with diaper gel beads. If I could ask her what her favorite thing to steal is, I am one hundred percent certain she would say, "Duh, you human idiot, dirty diapers. It's so fun to toss them around and rip them apart and make a huge, smelly mess for you to clean up. After all, you've been ignoring me for years while you take care of these crying children!" And I'm pretty sure he arteries are nearly blocked from chowing down on sticks of butter. Is it her fault she find these things so enticing and can't resist them when we aren't looking? No! We left the diaper out or the trash uncovered, and we left the butter on the counter within reach. It's simple.

Unless told otherwise, our dogs and our children will continue to make mistakes and probably the same mistakes over and over again. We daily teach and redirect our children so they can become well functioning adults and part of society (though I do wonder if Isabella will still jump on the kitchen counter as an adult) and as dog owners, it is our responsibilities to do the same with our canine companions. You can't bring home a dog and expect it to know what you're thinking and instantly be aware of all the household rules and boundaries.

Imagine I had a lovely piece of cheesecake, with chocolate drizzled on top and lots of whipped cream. And I sat down at the table to enjoy this dessert and just then Isabella walked in the room:
"Oh, that looks so good! Where's my piece?"
"Sorry this is just for me."
"But you know I love cake, and chocolate, and whipped cream!"
"I know, but this is for me, sorry."
Beginning to get desperate, "That's not fair! Why can't I have some?"
At this point she quickly swipes her finger across the whipped cream for a taste.

Replace Isabella with a dog: The desperation is replaced with demand barking and the swipe of her fingers is paws on the counter or table and/or a tongue reaching out to the plate.

Now, obviously I would never do this. Any sane person should know they can't enjoy a dessert in front of child without offering some to them. This is why I save my dark chocolate for after bedtime. I would guess, this is how our dogs feel when we begin cooking dinner or sit down for a meal. Charley assumes he should have his paws on the counter while I'm cooking and demand barks at me while I'm chopping vegetables. I guess my point is, there is no point in yelling at him for this response, he hasn't been taught, or rather, he is in the process of being taught, that this is not appropriate behavior. Instead of yelling or kneeing him in chest for jumping up to the counter, he is redirected to something enticing of his own like a bully stick, or a his favorite toy, and for demand barking, he gets a time-out because this is a behavior we are really working on with him.

So what's a good dog? I think a good dog can be found with a good owner. And most bad owners don't realize that they have a good dog who just needs some help.

Let's set up our dogs for success in the same way we set up our kids for success. Our expectations have to be within reason. And just as you shouldn't be a lazy parent; don't be a lazy dog owner.