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This blog is really about our kids, Jacqui and Kyle:

Jacqui is a wonderfully energetic and opinionated five-year-old. She was born with a rare birth defect known as a lymphatic malformation (LM) and has been through a lot in her young life. She had a trach until she was a year old, had surgery in New York to remove her LM with world renowned surgeon, Dr. Milton Waner (at age three), and still has a G-tube. She is a bright sunny soul in spite of everything.

Kyle is a thoughtful, and slightly reserved 2-year-old with a magical giggle and a wise-looking smile. He is clever and charming and a bundle of pure joy.

Our goal as parents: To treasure every moment and to raise our children to be extraordinary individuals.

Welcome to an inside view of our world!



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A Refuge in the Sea

September 30, 2007

SW

Photographer Unknown

Surrendering my fears. A task that has never come easy for me. That is what my friend, Melody, over at Wrapped Emotions asked of me this week:


“Take a pen… write your fears… be honest with yourself …make them into words… see your fears. …This week find your ritual [for letting go of fears]. Experience it. This is a personal journey. …What you create…be it a page of jumbled words, mingled colors, introspective images, should be intimately yours. …Write a blog post with what you are comfortable sharing.”


This is a hard post for me to share. I have been putting it off all week. As the parent of a child with special medical needs, I have become accustomed to hiding. Hiding my pain from staring eyes of strangers, my anger over thoughtless, tactless comments, my heart from posers of that casual question, “How are you doing?” I know that most really don’t want to know. I see it in eyes that glaze over, on rare occasions when I summon the courage to share. I put on a smile, hide behind a laugh and give the expected answer. “I’m fine,” I smile. “Just fine.”

So Melody has asked and I promised to answer. I warn you, this is a long post. She asked for “real” and I cannot be real in a paragraph. It’s just not within my power. So, if your eyes haven’t glazed over already, read on…

SW1

When I think back to seven years ago, I realize that I once lived a pretty care-free life. Sure, I had fears. But they were the run-of-the mill variety… passing exams, graduating from college, getting married… Nothing of the sort that would keep me up at night, on my knees, pleading with God for deliverance.

On June 13, 2000, all of that suddenly changed. After months of trying to start a family, my husband and I experienced our first miscarriage. It would be the first of many. I fell into a tailspin, spiraling into the deepest, darkest fear and depression I had ever known. I had no idea how to handle fears of this sort. My life had been skipping along a perfectly manicured path, lined with happy expectations of my own devising. And suddenly, I was drowning.

For a year, I drifted, becoming apathetic about my own life, often staying up all night, begging God to just let me die. On the anniversary of our first miscarriage, I was overwhelmed with grief, desperate, and heartsick. I remember waking up that morning and curling into a ball of convulsive sobs as I realized I had once again not been permitted to die in my sleep.

That morning, I prayed something different. For the first time when I prayed, I asked God to teach me how to live. To give me the grace to bear the heartache. And God was faithful. He threw me a lifeline.

I couldn’t understand why, but I found myself feeling compelled, called to a specific action. I knotted my hair into a disheveled ponytail and pulled on a sweatshirt. I grabbed my Bible, a notebook and my keys and headed out the door. Then I sat in my car, confused as to my intentions, wondering what to do next. Suddenly I knew. I pointed my car west. My ritual for facing my fears had begun.

SSW

Photographer Unknown


“Man cannot discover new oceans unless he has the courage to lose sight of the shore.” ~Andre Gide

I reached the rugged pacific coastline and began scanning the cliff-sides. They flicked by, black and glistening with sea mist, dotted with twisted and gnarled myrtle trees that silently pointed the direction of the wind’s favorite path.

Amongst the jagged, stygian rocks, I at last glimpsed what I sought. I pulled the car off the highway and out of sight and began picking my way through rocky outcroppings toward the sound of the pounding surf. Soon I was completely hidden from view. I spied an ancient stone seat, carved by a millenia of relentless tides.

RW

It glistened with the damp of atomized surf and beckoned me to enjoy a front row view to the pyrotechnics display of the crashing waves. Muffled barking calls drifted upwards from the seal rookery below, luring me in for an extended stay.

Somehow, before the immenseness of the ocean, I found the courage to name my fears. Fears that I would never be able to have a child, that because of me, my husband would never know the joy of seeing his eyes or mine in the faces of his own children, fears that I was somehow being punished, or paying my dues for a near perfect life, fears that the miscarriages had somehow been my fault.

I wrote them out, page after page, on the dampened sheets of my journal, salt form my tears and salt from the sea blurring the ink into swirling pools of transcribed heartache. I wrote until I had emptied my soul and then one by one, surrendered my fears to God.

J2

I closed my book and pressed my back into the cold, damp stone and stared out to sea. I watched as the clouds gathered at the horizon and the sun sunk low. Through my heart rang the promise I had discovered earlier while reading: Jeremiah 29:11 - the verse in the upper left corner of my blog.

J4

I watched as the clouds opened up to receive the setting sun. It slipped through a slot in their sun-splashed billows like a coin in a bank, before spilling its brilliant reds and golds across the surface of the sea and sinking toward another watcher’s dawn.

The sky imperceptibly darkened and I felt the chill of the coastal evening advancing. I tore a corner from the first page of my journal entry and watched it flutter into the roiling foam below.

J4

It was done. My fears were no longer mine to pour over in silent, bitter heartache. I had surrendered them to God, buried them in the depths of the sea. I stood, feeling a measure of peace, the lifting of a great burden, and began picking my way back through the rocks toward home.

Many pages and many journals have been filled since that day. Many corners have been torn from many entries and allowed to flutter downward into the depths of the sea, each torn corner serving as a sentinel, a reminder that the fears listed there are no longer mine alone.

When I look back through the pages, I see that my fears have changed with time. Something I see as progress in my life. I am no longer dwelling on my fears, allowing them to paralyze my soul. I name them, surrender them, and keep walking.

In May of 2002, we feared for yet another unborn child. On a 20 week ultrasound, we learned we were expecting a baby girl. Our joy was mingled with new fears as we heard words like: Cystic hygroma, teratoma, lymphatic malformation, Down’s syndrome, trisomy 18, Turner’s syndrome, miscarriage and stillbirth. Together, my husband and I surrendered these fears to God on the face of that same black cliff, pledging to draw closer to God and to each other no matter what lay ahead.

In September of 2002, when she was just two weeks old, I stood in a NICU unit watching nurses and doctors scramble around the lifeless, mottled gray body of our only child. Monitors beeped, frantically calling out their alarms of zeroed readings and flattened lines. I longed to scream along with them in an agony I still cannot name.

In my mind, I went to my rocky seaside cliff and begged God to save our little girl while surrendering to him my fears: My fear that I was losing her due to some personal failure of mine, my fear of facing life without her, my fear that I would never be free of the image of my gray, lifeless child. God answered my prayer and I watched her flush a violent shade of pink as she took a ragged shuddering breath.

There have been many more fears since then: Fears that we would make the wrong decisions for her as we navigated an unending maze of complex medical decisions, that treatments would fail, that surgeries would lead to complications or that we might lose her altogether. Fears that one day she will not understand the decisions we have made for her, that she will look on our choices as failures to serve as guardian over her best interests, that I won’t have an answer for her on the day she asks me why her life is different. Fears that we might never be able to have another child, fears that I am insufficient as a parent for the wonderful daughter and son I have been blessed with. One by one, I write them down and give them away to one stronger than myself, in a place that speaks to my soul.

I cannot always flee to the ocean with two children in my care, but I draw strength from the knowledge that my husband and I will both give selflessly for the other. That if I need solitude, it is mine for the asking.

Sometimes I seek refuge in an old rare bookstore, where a worn leather chair waits for me like an old friend amongst mouldering volumes, cradling ancient phrases of wisdom within their fragile gilded bindings…

MB

Sometimes it is in the dark dampness of our backyard, among the towering pines where I first dreamed of motherhood…

BY

… And sometimes it is just a niche I have carved out within the walls of my memory. A memory of that special place at the edge of the sea. There is solace for my fears in knowing that my cliff-side perch is always there, waiting for me to come and whisper my secrets and surrender them to the author of life.

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Twinkle, Twinkle…

September 27, 2007

Well, I’m just not sure what to say… Corey at Living and Loving Every Minute of It, seems to fine my blog has a certain “twinkle” to it and has awarded me with the Blogging Star award. Thanks Corey! You put a smile in my Kleenex filled day with your kind words about me and I am happy to pass this shiny award on to the following deserving bloggers:


  • Jordan at Mamablogga. A blogging star if ever there was one! Jordan is the author of an amazing blog filled with wonderful stories about motherhood, as well as tons of great blogging tips from practical to technical. If you are new to blogging and have ever sat reading someone else’s blog and wondered, “How did they do that?”, Well… Jordan probably has the answer!
  • Ursula at The Daily Drool. Ursula is one of my absolute favorite readers, and her blog is one of my absolute favorite reads : ) This lady is a star from any angle!
  • Courtney at One Day at A Time. I am in complete and utter awe of this woman. Anyone who can manage to survive day to day life as a new mommy of twins and find time to blog has to be somewhere very near the top of the blogging star stratosphere!
  • Summer at Summer’s Nook. Summer’s blog is a relatively new find for me and I have been happily plundering through her archives. Her stories are warm and heartfelt and often thought provoking. She is a blogging star of the “Five Star” category and quite deserving of such an award!

And one final award… Something went awry with my September 16th post, And They Just Keep Coming….

I had awarded the Blogger Reflection Award to a number of individuals, but just noticed this morning that one of my intended recipients was missing from my post. I blame this on the combination of my abysmal HTML mode blogging skills which rely soley on my mastery of cut and paste buttons and my shocking intake of Dimetap over the past couple of weeks.

The Blogger Reflection Award states that it is intended for bloggers “who have been an encouragement, a source of love, and who have given an impact in some way…”

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The Blogger Reflection Award

So, without further pontification… The Blogger Reflection Award goes to… Da, Tada, Da…

Deb of Mom of 3 Girls!

Deb is an incredible mom, an amazing blogger and a dear blogging friend. She is everything the Blogger Reflection Award is about and so much more. She is on my list of must reads for the day and I always look forward to what she is going to say next. If you have never stopped by her blog, you are truly missing out! Thank you Deb for being such an inspirational Mom and encouraging friend!


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Gluten Free Gems: Ritz-Like Crackers

September 26, 2007

RC

Since I seem to have a cracker theme going on here (the absence of good tasting gluten-free crackers is a pet peeve of mine) I thought instead of a recipe, I would share with you one of my recent favorite finds. These Ritz-style crackers by Glutino are by far the best commercially prepared gluten-free cracker I have come across. They do state on the box that they make contain trace amounts of milk, casein, or soy, so if you are highly sensitive to any of these ingredients, they may not work for you. My daughter, Jacqui, is on an essentially GFCF diet, but her food sensitivities are of a more volume related nature and she is able to tolerate foods containing trace amounts of milk or casein.

These crackers are really quite good! Not quite as buttery as a Ritz cracker, but a pleasant flavor. Most importantly, they have that wonderful oh-so-elusive flaky texture. None of that rice cracker snap going on here! Jacqui would literally sit and eat an entire box if I let her, but they are a little too spendy for that. I was able to find them at a local specialty grocer’s for $3.79 a box. Most of the on-line sources are running at about a dollar higher.

That said, if you are craving something like this to have around as a luxury item, then they are everything they claim to be. They would be excellent with soups! My daughter loves them with Tofutti’s Better Than Cream Cheese. *Kid Friendly Tip* I tint the cream cheese orange with red and yellow gel food coloring, spoon it into a pastry bag with a wide fluted pastry tip and pipe it onto the crackers. Voila’ ! CF ‘Easy Cheese’ : )

If you are having trouble finding this product locally, they can be purchased on-line at glutenfree.com - $4.94 plus shipping for a 5.3 oz box.


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An Award to Pass On…


Casey from Casey’s Critical Thinking recently awarded me with an award called the Mathetes Award. The award was started by Dan King of Management by God. He explains on his blog that “Mathetes is the Greek word for disciple, and the role of the disciple (per the Great Commission) is to make more disciples.” Recipients of the award are asked to pass it on to five other deserving blogs.

Before I continue any further, I would just like to acknowledge for a moment that many people who read this blog are not Christians. I want you to know that you are welcome here. That I respect and value you as readers and that this post is in no way intended to be a sermon or an attempt to force-feed anyone my theology. The nature of this award does merit a little more in-depth discussion of just what it is that I believe, but you are by no means obligated to read it and are welcome to sit this one out. However, if you are just a wee bit curious to know a little more about what it is that makes me tick, what it is that makes my family tick, then by all means read on…

I have to say, I was more than a little surprised to receive this award since my blog tends to be more in the typical “Mom Blog” category than of the sort of blogging I would expect to be deserving of such an award. If you have spent much time at my blog, you will have undoubtedly discovered that I am a Christian. The big scrolling verse at the top of my blog being your first clue, I suppose. But my posts don’t often delve deep into the hows and whys of Christianity. My posts that speak to topics of personal faith tend to be more along the lines of something like this, this, or this. I suppose I blog pretty much how I live my life. What I believe is just a part of who I am. It just naturally comes out here and there as I chatter away, but I’ve never been the sort of person who could put together a post, or an everyday conversation for that matter, for the express purpose of Christian instruction … or discipleship (one notable exception being discussions with members of my own family). There are so many other folks who are so much more capable in this regard, Casey being one of them. If you have never visited Casey’s blog, then you are missing out on some truly inspirational and challenging reading. He is a disciple in the truest sense of the word.

As I puzzled over why Casey decided to pass the award my way, I began thinking about what a disciple is and what a disciple does: A Christian disciple is someone who puts Christ first in all things, who follows the teachings of Christ, who exhibits spiritual growth in their life, who displays love for other disciples, someone who is active in their faith, who willingly assists and encourages spiritual growth in others, and someone who is always ready with an answer for the reason for the hope that resides in their heart. At least that is my understanding of what it means to be a disciple.

So, although I know my failings and I often share them here freely, striving to be a disciple of Christ is truly first and foremost in my life. I hope that is why Casey passed me the award. I hope it is what people see on at least some level when they visit my blog. I hope that in spite of all my failings people see someone who is striving every day to be more like what a Christian truly should be. I hope that I sometimes inspire those who visit here to stop and take a second look at this thing called Christianity and that I am never the cause for someone to turn and walk the other direction in disappointment. So there you have it. Me in a nutshell. Thank you Casey, for seeing the me that I aspire to be.

Now to pass on the award:


I am going to give this award to the following deserving bloggers:
  • Sarah at Real Life. Sarah is a wonderful example of discipleship in action. Sarah says of her own blog: “My blog is called Real Life for two main reasons: 1. I have found “real life” in Jesus Christ. Well, actually, He found me. I want to share the joy and hope I have in Him! (Psalm 40:1-3) 2. Life is not perfect, and neither am I. You won’t find many stories about how my house is perfectly decorated and cleaned, my children are dressed to a tee and behaving like angels, and I have a four course meal ready for my husband when he gets home from work; and you can, too, if you just do what I do! I want to get real and talk about all the issues we know we deal with.” And let me tell you, she does it well!
  • Shalene at Proverbs31WomanWannaBe. In all likelihood, Shalene already has this award and is hiding it somewhere on her blog : ) Oh well, even if she has, her blog is excellent and is deserving of a second nomination. I can always count on Shalene’s blog for a post that inspires me to focus my day on the things that matter.
  • Tim and Kathy at Duckabush Blog. Tim and Kathy are an amazing husband and wife blogging team. Their blog chronicles their journey as parents and as a family while they strive to raise their children to love and follow Christ with all their hearts. The true heart and soul of discipleship!
  • Lynnae at From Under The Clutter. Lynnae is a wonderful stay-at-home-mom of two who approaches discipleship much the way I do. It just turns up in her every-day conversation. She expresses what she believes with such beauty and simplicity and she just inspires me to be a better mom, wife and friend. See this post for a little sample of what I mean.
  • Rod at Rod’s Blog. This is hard-core discipleship. Rod and his lovely wife Angelika are long-time personal and very dear friends of my family. They serve as missionaries Côte d’Ivoire among a primarily muslim population. They are a truly inspirational couple and if you ever wondered what “The Great Commission” was all about, then spend some time at Rod’s Blog. I must admit though, I do have a secondary motive for passing this award along to Rod - this is also a pathetic plea for a NEW POST! Please? Come on buddy, last one was in May… I just figured out this whole blogging thing in June and I ‘m dying for your next post! : ) (To be fair, Rod and Angelika were just back stateside on furlough and have been running non-stop. And, when they are in Côte d’Ivoire their access to a computer can be sketchy at times so he has exceptionally good excuses for long lapses between posts.)

My heartfelt thanks to each of you for being such faithful sources of encouragement and inspiration. Take your awards, pass them on, and continue to shine!


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Five? Really?? Five??

September 24, 2007


Well, I can barely believe it, but it’s true. Jacqui is now five! We had a lovely time celebrating her birthday with family this weekend and Jacqui is having a ball with her new birthday toys. All in spite of a 101.8 degree fever that crashed the party early Sunday morning. This morning she was dancing around in her new cheerleader dress-up costume and I took her temperature. 101.5. I don’t get it. I really don’t. Where does all that energy come from?

The rest of the family woke up Sunday morning with stuffy noses and fevers too. Everyone still feels rotten today. Ken even took the day off work. He NEVER calls in sick. He is wisely staying upstairs, sipping orange juice in relative peace and quiet. I am stuck downstairs refereeing the slightly crabby, stuffy-nosed Destruction Duo. I had about 2 days where I had just started feeling well before this lovely head cold set in. I’m really feeling sorry for myself too. I think I’m entitled to a pass on this one. The last one took me down for almost 3 weeks, so I should automatically be exempt from any more head colds for the entire season. At least through the holidays.

It used to be sooo much easier to be sick. I’m talking life before kids. I really don’t feel like sitting at the breakfast table for an hour-and-a-half and muttering , “EAT ANOTHER BITE” every 15 seconds. I really don’t feel like force-feeding a cranky 18-month-old only to be puked on the moment the last bite of cereal is swallowed. I really don’t feel like wiping runny noses other than my own. I really don’t feel like debating the superior qualities of pink Kleenex over the plain old white stuff with a 5-year-old. I just don’t. I really just want to crawl under a blanket somewhere with a bottle of Afrin shoved up each nostril and be left in total and complete silence. But that’s not gonna happen.

OK - ’nuff whining. I am very glad that Jacqui had such a happy birthday! She was ecstatic over her Dora The Explorer birthday cake, even though I didn’t make it this year. I had just been too sick, so I farmed it out to a bakery. I had a Dora cake mold and grand plans of transforming a Tigger cake mold into a Boots the Monkey cake (Dora’s sidekick) but it just didn’t happen this year. I still had to make her a gluten-free cupcake and decorate it, so she technically had homemade cake for her birthday : ) Apparently, homemade birthday cake is a much bigger deal to me than to Jacqui. To me, a homemade hand-decorated cake says “I love you” in a very special way. These are some of the cakes I have made for her in the past:

Jacqui’s First Birthday - Baby Blocks

Jacqui’s Second Birthday - Nemo

Jacqui’s Third Birthday - Jojo’s Circus

Jacqui’s Fourth Birthday - Cat in the Hat

To Jacqui, plastic Dora birthday cake toppings say “I love you” just as clearly. Really, I think it all comes down to the fact that she has just grown up knowing how very much she is loved. I hope she always knows - Happy Birthday Sweetheart!




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