A brand new start

July 26th, 2017

Hi Friends,

If you’ve been following this blog for awhile then you know how crazy amazing this whole journey has been. And it’s continuing. We’re just moving Cade’s blog and journey with Fibular Hemimelia and all those mom moments of mine to a new platform…a brand new blog. I’ve been blogging at Finding Lovely for awhile now and figured it’s way easier to do it all in one place. You can continue to find all of Cade’s progress posts on findinglovely.com.  There’s a Fibular Hemimelia tab at the top right.

Here’s the most recent: A Curious Case of Nearsightedness

Here Comes My Friend

July 30th, 2016

He is not marked by the flippant word. He knows no hurt in his heart yet. He freely loves and welcomes all, seeing only the benefit of their coming.

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I swallow hard. Steel myself. Hope I can give grace when I’d rather shoot daggers.

My heart has known flippant words from time to time. A marring glance. I know the damage, the weight, as those words or glances heap on and become heavier with time. As the momma bear all those months ago welcomed this sweet boy into her heart, she now fends the world off not just for herself but for littles as well. I want to protect his gentle heart. I love how it welcomes, seeks, unaware yet of the battle lines and expectations of this world. How do we hold our littles close while preparing them to be marked by this world? I think we can all agree, regardless of your religion or political orientation that this world is not good and we don’t always love like we should. Oh the wonderments of a momma heart.

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“Momma I want to crawl in the sand.” Sigh. We don’t yet have the sleeves that might help prevent the dreaded sand kernel from wrecking havoc on his prosthetic legs and all my sweet little wanted to do was crawl around pushing the playground truck. It, after all, had a very busy job to do and was just sitting there waiting for some little boy to see it’s potential (missing wheel and all).

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Cade heard it too and he said, “here comes my friend.”

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And I knew they’d walk right up to the sandbox because that’s the first place little boys want to go. And they did. I sat there. Clearly Cade looks different. What do you say? “So I see there that you notice my son doesn’t have feet.” Nope. That wouldn’t do. Talk about awkward. Then I thought “Feet. What feet. Who needs them.” Grimace. Nope why don’t you just dig that hole deeper Cade and drop momma inside.

“Caedmon, why don’t you give your friend here a shovel so he can play with you.” That’s the best I had. That’s all I had.

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And he did. He stump walked right over the edge, handed the little boy a shovel and sat back down explaining that the “excavator was working hard.”

So I watched and I waited, quite intrigued really. Cade could care less. He is not self conscious yet. He’s barely commented on the difference between he and mommy, daddy and baby Kai Kai. I’m not sure exactly when that starts. The little boy was reluctant. But he was also much younger. I watched the mom’s eyes dart. He eventually got in and started digging. So I looked at the mom and asked “how old is your son?” When in doubt, start with age. Win win. It eases them in. So she proceeded to tell me she was the nanny and we chatted away for awhile. She ended up asking about his legs and that is ALWAYS easier. It was nice and did not feel strained. I breathed a sigh of relief. Crisis to my heart (and his) adverted, for now.

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But I pondered it all the way home. My response was dread and a bit of anxiety at their arrival. My little boy simply, light heartedly, responded “here comes my friend.” Do you think maybe this is what is wrong with the world?

At some point we stop looking at other people as a potential friend and more like an enemy. An unknown. A potential hurt rather than a laugh, a confidant, or a hope. I have to wonder, what it would look like if I intentionally focused my heart on seeing everyone as a potential friend rather than an intrusion into my existence. What if I saw HOPE? What if we all did? Imagine that world. That’s a place I want to live. A place I imagine my momma heart would thrive.

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We all have known those heavy words but why do they stick harder than the joy words, the words of affirmation we all have ALSO known? I encourage you today to see that person for the potential they could bring rather an intrusion into your existence. It might just make all the difference. And right now, I think the world could use a difference.

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But this I call to mind, and therefore I have hope: the steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.”

-Lamentations 3:21-24

 

Adventure Won

July 11th, 2016

I sat holding the monster legs in my hands. They’re beaten up. Scuffed. Grooved. Marred. They are time worn gloriousness which means fun was had. Adventure won. It means we didn’t sit still. We didn’t stay put. We didn’t stay safe. It means we fell down. We cried. We got back up. That’s what worn out monster legs means.IMG_3045

We don’t all have prosthetics. Very few do. But we all have lives that are beaten up. Scuffed. Grooved. Worn. We’ve fallen down. Found ourselves places we didn’t expect. Don’t like. Think should be different. But ultimately these marked bodies reminds us that we’ve lived. It’s why I like wrinkles. It means you’ve smiled. It’s why I like grey hair (well kinda)…it means you’ve LIVED. This is cause for celebration friends. This is blessing upon heaping blessing.

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It’s that time again. When my little grows in leaps and bounds…well, bolts and carbon fiber I suppose. We’ve picked up a new set of legs and said goodbye to the old. He’s bigger. By an inch and a half. Two shoe sizes. Overnight. Leaps and bounds.

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Nextstep Bionics and Prosthetics in Newton, Massachusetts did a fantastic job, as they always do, crafting a set of leggies that withstands Cade’s fearlessness while celebrating his little loves. These ones have sweet, happy trains on them since Cade eats, sleeps and dreams in trains.IMG_3049

Nextstep also added an extra set of padding to the knee area. It has the same lock in mechanism we have come to love but this is the first set of legs where the liners differ in size, given his left leg is now thicker than his right. I really have to be on my game now when getting him dressed in the morning. Perhaps we should invest in that alarm clock that sends out the coffee smell…

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This set of legs couldn’t have been more appropriately timed since the monster legs died on Fourth of July. The beach killed them.

We celebrated the fourth of July at Crane Beach and I have been waiting for this beach day. Since getting two kiddos out the door anywhere by myself is near impossible, let alone, loaded to the gills with beach gear, we’ve yet to go this summer because it requires reinforcements, aka a husband. The beach is in my California blood. Staring out as far as the eye can see, it inspires me, uplifts and reminds me of my place on this planet. Especially in New England, this land of tree tunnels, few hills and valleys, lack of the open space–beach days are necessary for my sanity. So we got up at the crack of dawn, threw both kiddos, pjs and all, into the car and drove like crazy people to get to the beach in time. We were literally sitting on the sand before 9 am. Side note, only in New England do you have to PAY TO PARK AT THE BEACH (???) and line up to get a parking spot. Oh boy. Add that to the ever growing list of reasons to move back to California.DSC00409

But these beaches. They are works of art. And if the dunes and fencing couldn’t get prettier, you have the delicious smell of wild roses everywhere you go. It makes my soul sing. Shoot. Add that back to the Boston is ok-ish list.DSC00216

So we sat on the shore, watching Cade run from the waves with his cute monster legs. The squeals, the running, the little boy adventuring forward…it never gets old, my soul never stops rejoicing. If you have found out you’re expecting a little with Fibular Hemimelia, I promise, your beach days are just down the road. It will all be alright.

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Smelling the roses and salt wind, carefree and unadorned, we sat. And played. Kai slept.

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Last year, around this time we sat in the same spot on the same beach with my growing belly. Kai was just a wonderment. If you would have told me we’d have 7 months of terror baby I might have stayed on the beach a little longer. But we’ve sleep trained and are rolling with it better and are frankly, just use to A LOT of crying. So the days are brighter. They are easier. We’ve fallen into something more livable and thrive-able.

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Both kiddos and their parents were done beaching it up by 11 am. Which is when the fun started. By the time we got back to the car we knew we had a prosthetics problem. The locking mechanism on Cade’s prosthetics were jammed. Thank you carefree sand for locking our little beach baby IN HIS LEGGIES. This has happened before and it required the garden hose and a hammer. Such is life with a toddler in prosthetics. So we found the blessing in that NO ONE called child services as we dangled Cade upside down, pulling and tugging on his legs. I had his arms, Matt had his legs. He just squealed in delight as though this wasn’t a form of prosthetics torture. It was a sight to behold. We finally resorted to wiggling him out of his liners which were still locked in place. Oh boy. There’s something comical about having to hit your kid’s legs with a hammer to get them off. Our trusty prosthetist, Arthur is ordering us special sleeves to hopefully keep sand out and the fun in! Jury’s out if that will solve the sand dilemma. You can bet we’ll be putting them to the test as beach days are not off the table. We’ll just bring along the hammer next time.

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So we begin this next step in the journey, his third set of bilateral prosthetics. Fun, memories and thankful hearts—with these sweet new train legs we chug on. Remember dear friends, sometimes things not working properly serve to remind us of how blessed we are…sandy, broken legs means fun was had. Adventure won. The scuffs and grooves mean we lived. Blessings.

A Fickle Momma Heart

May 6th, 2016
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Baby Caedmon, 2 months old. My 1st Mother’s Day

DSC01662Mother’s Day is fast approaching. And I’ve been mulling it over. What do I want for Mother’s Day? My husband has been asking. He may be deathly afraid of screwing it up after the Kai tsunami. And he’s not far off…after having Kai I’m fairly confident a trunk full of gold bars wouldn’t feel sufficient. We’ve bounced and cried and nursed and bounced and cried for ALMOST SIX MONTHS now. DSC07473I’d love to say we’ve turned a corner. Love to say he’s an entirely new baby, delightful. Gentle. Kind. But he’s one of those kids that has you scratching your head and wondering how early is too early to drink. Except I’ve never really drank and all I really want to drink is Starbucks…like the entire store. So what do I really want for Mother’s Day? The first thought that comes to mind, if I am completely honest, is the desire to celebrate Mother’s Day by pretending I’m not a mother. DSC08477I want to wake up at 11, sit down to eat breakfast in it’s entirety without reheating 14 times and making sure its soy and dairy-free. In fact, I’d like to put Trader Joes vanilla ice cream on top of butter on top of my french toast just to spite the whole darn thing. In this magical world there would be no dirty dishes, flying sippy cups and refusal to eat food that have mistakenly been found to look ever so slightly like “an icky bug.” Then I’d like to sit in my joy chair and read. Something really good and really long without phantom baby cries tricking your ears. Then I’d like to get dressed and go out on the town with my husband. And I mean dressed. A shirt that doesn’t require access to the goods so baby can eat. Jewelry that won’t become a pull toy. I’d like to do my hair (at this point that would require getting the manual out to figure out how you start a hair dryer).DSC08244

You see, if you’re a lot like me you want what you don’t have. If you aren’t a momma yet you can’t wait for the day. If you don’t own a house yet, you can’t stay off Zillow long enough to brush your teeth. If Webster defines colic Kai Kleker, you want the happy-go-lucky dream baby that every one else seems to have. If you’re a tired, cry-numb momma the first thoughts jumping in your head when allowed to dream about a glory day is wanting to go back to the no kid glory days. Except those were the days I ached so badly to have kids. There was hope in that place and honestly I was the one in control. I could make that dream exactly how I wanted it to be. Clean house. Angelic little squishy faced babies that LIKE sleep. And I mean a lot. The point is that there is always striving, in every stage of life. But this doesn’t sit well with me. And it shouldn’t because it isn’t right. It speeds up life and leaves us feeling empty handed, passed over and forgotten and we are never those things. We are seen. We are loved. And our lives our brimming with blessings. DSC08204

I recently read (I know, go ahead, round of applause please) the book by Becky Thompson called “Hope Unfolding” and it was a wonderful. It made my momma heart lighter because sometimes being a momma feels ever. so. lonely. Every person on the planet at this point knows being a mom is a full time job. That’s why they gave us a holiday. Clearly it takes stamina to fight the good fight and these littles are always worth the fight. But I also know myself. I know that the only reason my first thought was to celebrate Mother’s Day by pretending to not be a momma was simply because that would be easier. Easier than fighting a baby to sleep or ordering the entire baby sleep section off amazon books, secretly hoping he sees the stack and realizes you mean business without having to actually implement anything that causes MORE crying. Easier than fighting the frustration tantrums of a two year old. Easier than trying to make dinner while balancing said screaming baby on one hip, stirring with your other hand and rolling trains around the floor with your toes. We fight against things that make us stronger, dare I say, better.

DSC08754We decided before having babies that we would find a book that summed up something we hoped for our child. For Cade’s baby shower and hospital stay after delivery we had friends and well-wishers sign the Dr. Seuss book “Oh the Places You’ll Go” because that kid is going to go somewhere and hopefully not to jail. There’s a part in his book that plays through my head often. “No. That’s not for you. Somehow you’ll escape all that waiting and staying and find bright places where boom bands are playing.” How do you do that? How do you find those bright places where you aren’t waiting for something to change? For me I think it takes purposeful thought that grounds me in present day. So in an effort to purposefully find those bright places I’m going to be starting a new blog (in addition to this one) to specifically focus my heart on the lovely things that are all around me. To focus my heart not on the things I find lacking but on the things that make my life so full. This is momma-hood. It can make us short sighted but our lives are full and we are blessed. We just can’t see it sometimes without stopping and choosing to. So stay tuned. And if anyone knows a good website designer let me know.DSC07941

So for my third Mother’s Day ever, I want to be a momma to the messy babies and the messy life that I already have. And if I was again being honest with myself, the celebratory thought of pretending I’m not a momma for a day only emerges in my conscious because I know in my heart of hearts I wouldn’t trade these little boys for anything. They are here to stay and these boys make me momma. And for these littles I am blessed. If you are a momma or almost a momma or have a dream of being a momma this day is for you. It is your day because it reminds you and allows you to choose to see the blessings. We need to slow down. Slow all that striving and embrace the lovely that has already been set in our hands. Happy Mother’s Day.

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Momma Get Stronger

April 8th, 2016

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Today I tried to do something for myself. I stood in front of the mirror and gave myself a little pep talk. Which went something like this: “Jackie. You’ve got this. They’re just kids. They aren’t going to kill you. They aren’t going to kill anyone else. Here’s what you’re going to do. You’re going to feed the one a snack while you nurse the other while packing the diaper bag while making sure your cell phone is charged while making sure additional snacks are in the bag. Don’t forget your wallet. You’re going to lug both of them up the stairs, change their tushies, grab a stack of additional diapers, sing Itsy Bitsy Spider to the one to distract him from the fact he has to leave his trains behind while wildly waving your hands in front of the other to make sure he doesn’t realize he is being put into the torture seat (AKA carseat). Then you’re going to make a mad dash outside, into the car, and then drive like a bat out of hell to the class. Got it?” Good. DSC05474

So I proceeded to do just that. And I wasn’t late. I even called ahead to see if I would be penalized for signing up for a class only to not make it due to a melt-down of the century. Momhood is misunderstood. Mommas aren’t late or miss dates because they are eating bon bons on the couch. I was assured there was only 13 people signed up and that I could just show up. Sweet. Maybe no other kids? Maybe they’d love this. This would be the first time I ever attempted dropping my babies off at a nursery while I attended any kind of class, let alone the Barre3 class which I just joined and was super excited about. What could possibly go wrong? Well let me tell you.DSC05880

Precisely 27 minutes. That how long it took for both kiddos to get so worked up that I was flagged down. The humiliating walk out of a PACKED class because MY kids were the disturbance. No kidding. I couldn’t help but notice all of the other babies playing quietly while their moms got to work out, have some “me” time and regain their sanity. Not my kids. I thought Cade would be fine. I had no such expectations for Kai. But everyone says you just need to power through. You need to keep trying. Keep trying to live. There was not just one sweet lady trying to calm / watch my babies but FOUR. And all four were just as bewildered as I on how to do that. What the heck is wrong with these kids?

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I held onto Cade, Kai was a lost cause. And in between sobs he kept saying, “momma get stronger. Momma get stronger.” Just what part of me is getting stronger? It’s certainly not the flabby belly. I had talked him through the entire ride there. Momma was taking a fitness class. You’d be able to see me the whole time. You’d get to play with new toys. Momma needed to get stronger.

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As I stepped outside, defeated. A bit embarrassed, the sky literally opened up and I was pelted with hail all the way back to the car. The heavens were throwing their “tomatoes” at me—at this act called motherhood.

So many people have said, “this will refine you” or “this will make you stronger” but it’s not…not yet anyways. It is literally breaking me into pieces. Hammering every hope, every sanity, every self anything out. Two kiddos, one stay at home momma. My world is getting smaller and smaller, it’s defeating at times and today is one of those times. And if I chose to sit here in my defeat I would ultimately stay broken and no good would come. And something good has got to come out of all this breaking and shedding of self.DSC04655

We’ve been attending the same Bible study for 8 years. And just this week, Matt and I came to the conclusion it was finally our time to step back, take a leave and try to survive these kids. Our world just got that much smaller.

And after today, this horrible wreck of an attempt to do what normal people do every day, I realized, our world has gotten smaller so we can ultimately make it bigger. We’re adding two people to this place and we’re pretty darn determined that they turn out ok and do good in the time they have. I have been broken so I can come back stronger. It has to be that way. I’m raising littles up into the world. I’m contributing something. And they’re showing me every selfish bone in my body and the breaking hurts. If I hear one more well-meaning person tell me just how quick this season goes I’m going to spin wildly out of control like a half filled balloon, untied and allowed to loop through the sky until it falls to earth…defeated. Quick it may be but only when you look back.DSC04638

Momma get stronger. I’m trying sweet Cade. I am slowly learning to embrace this season of smaller worlds and daily defeats. And I’m going to get a pedicure tonight just to spite it all. Where is your world breaking so ultimately you can change, get bigger, come back stronger?DSC05813DSC07369DSC07381

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” –Jeremiah 29:11

Blessings

December 26th, 2015

DSC02211Blessings. They come in many forms don’t they? I glanced around. Toddler down and kicking. Must be a frustration tantrum—his new ride on firetruck got stuck on the rug. Baby. Well. He was screaming. Surprised? Nope, the “Kai Kai all I do is cry cry” special. Hubby trying to figure out which one to grab first. I couldn’t help but smile. And here all we were trying to do was get Facetime to work so we could include family in the memory making chaos. Imperfect PERFECTION. Merry Christmas.

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Blessings. Oh how sweet they are. This has been a trying season. A dairy-free, soy-free, SLEEP-free season of beauty. The Lord (knowing if snow was added to this mix I’d be admitted to the insane asylum) has decided to give us the most glorious of weather seasons. And it has been sanity to my soul. You walk outside WITHOUT a big hefty coat of sadness-wicking fluff only to breathe deeply the sweet crisp air. A Napa, California winter in the heart of New England. We’ve walked and walked and walked. Kai sleeps, Cade mimics firetruck noises (we-o, we-o, we-o) trying to wish one into appearing that second. I breathe and walk and breathe and walk. Baby weight is stubborn this time around. I think my scale is broken. It’s stuck on one number and not budging. Oh well. Breathe and walk, breathe and walk, breathe and walk.DSC02261

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Blessings. Choose to see them I tell my soul. Because it is so much easier not to. Don’t fall into that Jackie. Between diapers, meals and toys (OH SO MANY TOYS) you can lose sight of them. But then the other night, I was getting in the shower and saw two little socks flung under a stool in the bathroom. It caught me off guard, the memory of hope from so long ago. Wanting so badly to have little feet to put those socks on. And then Cade came and I was still wanting so badly for him to have feet to put little socks on. And now there is another who actually needs the little socks on his feet and his difficult little personality had me almost wishing those little socks away. Blessings. Choose to see them. We don’t get to chose them. But we DO get to name them as blessings. See them as such and live with them. What are your blessings. Name them. See them. Live them with joy. Merry Christmas, merry everything season my friends.DSC02254DSC02235DSC02203

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Welcome Baby Kai

December 1st, 2015

 

DSC09124We welcomed baby Asher Kai to our crazy wonderful life on November 17th at 4:42 pm weighing 6 lbs 14 oz. He’s been a surprise from day one so leave it to him to come almost a week early causing a scramble–laundry wasn’t done, the house wasn’t clean, childcare for Cade wasn’t in place and Nana was forced to jump on the nearest plane headed east.DSC09174

Sweet baby Kai is a great surprise, has been even from the beginning, and he continues to kick all my expectations to the curb. Don’t ask me why at this point I still have them. If it were up to me these kiddos would have been spaced further apart, Kai would be a girl and would have politely abided by his due date. He was darn difficult to name to boot. This baby boy was always going to be Kai but we liked it as a middle name leaving us on the hunt for the first name for formality’s sake. For some reason we just couldn’t pin one down. We thought Beckham if he had crazy hair (he did, but that name was quickly kicked to the curb thanks to David Beckham being named “sexiest man alive” the day before he arrived). I liked Bennett but all Matt thought of was Tony Bennett. We both loved Landry and almost went with that but Asher couldn’t be beat on the name-meaning front. Asher, our “fortunate blessing”.DSC09231

Labor began precisely at 5:40 am Tuesday morning. I know because I rolled over in bed and thought, “yep, of course.” I got up, showered, blow dried my hair between contractions because that’s what sane people do. Our dear dear friends took Cade for the night. Packing that little boy up, watching him walk out the door with a runny nose and “momma” on his lips just about did me in. Talk about feeling divided, watching one little boy need you while knowing another was just about to join the party.

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I labored at home as long as I thought safe because I knew the minute we walked into those blessed doors they’d be poking me, sticking antibiotics in me because I happened to test positive for Strep B. I feel very strongly that antibiotics given to momma’s in labor are contributing to all kinds of issues little ones are facing, however I’m assured by research and doctors that a little one fighting Strep B is a horrible thing to endure and although your odds are low, we already had a 1% baby at home. So my theory was, labor at home AS LONG AS POSSIBLE = Less antibiotics. We got to the hospital around 2 pm and baby was born at 4:42 pm.

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Everyone said, “just watch and see how much you love this little one.” But he came out and I just stared at him, waiting to instantly love him. But I didn’t. I don’t think this is me. Or how my heart loves. I’m not sure I’m a “love at first sight” person. I fiercely love my Cade. And I fiercely love my husband and family. But it’s taken years and memories and moments to make my heart “feel” what this love is described so freely as. I can feel it creeping in, sneaking up on me when I look at Kai’s goofy little hair-do (NO IDEA where that head of black hair came from), or his scrawny legs (this kid is SKINNY)…I can tell I’ll be there soon. But an instant love connection, not quite. I’m still trying to figure out how to get him to think 2 am is not time to go clubbing or time for epic 3 hour long nursing sessions. DSC09085

It turns out Cade had double ear infection. Poor sweet kiddo. Antibiotics had him feeling better quickly. We tried our darnedest to keep baby and Cade separate until all cold germs were accounted for and I think we were successful. Nothing like that stress on a new momma, being told by the Pediatrician that if my new baby came down with what Cade had, it would be a hospital admission, spinal tap and all kinds of tests. I’m not sure I could have handled that. So far the Lord has blessed baby Kai with health. That is an ongoing prayer. My sweet mom landed about 12 hours after baby Kai was born. Cade adores his nana and her help and patience and presence has been a blessing. She leaves tomorrow and I’m bracing myself for a Cade melt-down of the century. I might just join him this time around. There is just nothing that compares to your mom. If it wasn’t illegal I’d tie her up and refuse to let her go.DSC09059

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We’re all doing well and getting more and more tired. Hence the need to formally welcome Kai before we turn into zombies and forget how the internet works. Much love to you all this holiday season.

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Here are some pictures of sweet Kai’s epic nursery. What fun it was to decorate. A soothing, neutral room, a bit nautical but not cliche. I love it and thought we’d share. Bless hubby’s heart (and the grandma’s!) for helping me wallpaper, create a mobile and lots of nursery art. It’s still coming together but is my favorite room in the new house.

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A Year Ago

November 6th, 2015

DSC08799A year ago today we were downtown at Boston Children’s Hospital, handing our sweet little man over to our medical team for his bilateral Symes amputation and sitting for hours in the waiting room by a window. I chose that window on purpose. It was an awareness that there was life outside. People were going about their ways, living. We were surrounded by my mom and dad and our community of dear friends, our pastor and new friends who were stopping by and they floated us through, the tangible grace of our Lord. 

Today my little warrior and I celebrated by going to the park. He brought his pull along dog toy and ran, slid, climbed his way into bliss. As a momma, I preferred today over last year clearly. I would have done anything for a glimpse of today, one year ago, as I sat there, hoping all was going to be okay, wondering how he was going to process the loss of part of him and the gain of something entirely foreign. Last month he got his second set of legs. He LOVES them. He shows them off to strangers, lifting up his pant legs and saying, “ha ha ha.” Clearly that’s what friendly monsters say. And all is well. DSC08775

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Arthur our prosthetist warned us the 2nd go around was never as easy as the first when it came to prosthetic fittings. Boy was he right! Bless Arthur’s heart as he patiently endured baby sobs while trying to make perfect little leg casts so we could gain cute little monster legs. We ultimately let Cade decide which material he wanted for his new legs. He walked over to the samples and pointed at his monster PJs saying, “Ha ha ha.” That sealed that deal. Monsters it was. And it kind of epitomizes this stage of toddlerhood to a T. My little friendly monster baby.DSC08802

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DSC08835I can’t help but reminisce these last few weeks. At 37 weeks, closing in on 38 weeks pregnant, I’m often overcome with, “how the heck am I going to do this?” moments. I look at Cade, my sweet babe, and wonder how you love another? How you nurture his heart while keeping another alive? People clearly do it. I long for another crystal ball glimpse of a year from now, wondering where we will be. I trust that all will be well because although we walk many hard roads in life, we are never alone, never without grace, unending never ceasing, grace. We get to the mountain tops only to see a vast range of mountains. But having made the ascent we are stronger, better equipped to tackle the climb when called to. Thank you for walking this year with us. You are grace to our hearts.DSC08848

Lamentations 3: 21-24 “But this I call to mind and therefore I have hope: the steadfast love of the Lord never ceases, his mercies are new every morning; great is His faithfulness. The Lord is my portion says my soul, therefore I will hope in him.”

Sometimes Not Okay is Okay Too

September 9th, 2015

DSC07650A week-ish ago, Cade and I scrambled over to the mall (not his choice of course…well, or mine really). This is not my favorite shopping season. As much as Caedmon loves his stroller, he’d rather run into oncoming traffic laughing the whole way. Which is why he’s bolted into his buggy AT ALL TIMES near traffic. So. That left a less than enthusiastic toddler to cheer on his momma as she fought fabric and zippers. Baby bump number 2 has decided to be drastically bigger than baby bump number 1. DSC07723The dress I had ordered weeks before the wedding just kept getting back ordered prompting an emergency scramble to find something that would make me feel less like a beached whale and pretty for a short window of time.

Many many stores and a few meltdowns later we were finally in line at Anthropologie. Success. There was no one around so I was nicely chatting with the lady. She asked when I was due. Phew. Finally at that point where its clear there’s something ELSE going on inside my abdomen rather than just too much Haagen Daz Raspberry sorbet/vanilla yogurt goodness (don’t ask how many of those have been consumed this summer). I told her probably Thanksgiving day when i’m really going to be wanting to eat my mom’s stuffing. She laughed and said she was due on New Years Eve. She didn’t look pregnant yet, still early but comfortable enough talking about it. So we chatted baby. She asked what I was having and I said ANOTHER boy. Curse of the Klekers I’d say. She was also having a boy and she casually tossed in, “you know. Just as long as it’s okay, you know, 10 fingers ,10 toes.” And, although smiling still, my breath caught for a second. I laughed it off but my heart was not laughing. Yikes. What if, just what if, you don’t get 10 fingers and 10 toes? DSC07566What if not okay is okay too? I wish I would have had the grace in that moment to offer, instead of a casual laugh, a word of wisdom. Sometimes the most beautiful experiences of our lives come out of something that is NOT OKAY. We’re terrified as human beings of anything “less than normal” or not “okay”. But I have gathered through many happy squeals and baby kisses that not “okay”, not “normal” is wonderful. DSC07422And more so than a healthy, perfect baby of your dreams, the different ones, oh they are so good for the soul. They are the Lord’s blessing. They teach us to see things in different ways. To understand how good can come out of not good. It’s a reflection of a broken world that has it’s roots in a beautiful, perfect one, that our hearts would crave perfection, yes. I understand that. I crave it every day. I crave 10 fingers and 10 toes. But I am so so blessed to get to watch an amazing little boy RUN. He doesn’t have a single toe, albeit plastic ones (which hurt like heck when they step on you). But he is wonderful.

Here’s how I’d like the conversation to have gone: “You know what. I hear you. Healthy is more important than the baby’s gender but we didn’t get good news when we went in for that first ultrasound. Our little guy didn’t have 10 toes and would need surgery and prosthetics. I was devastated. But he is the most beautiful blessing I have ever known. So even if you don’t get perfect news or even what you expect. Not okay is okay too. You’re stronger than you will ever imagine and little ones like that open your eyes to the great, beautiful things of life.”DSC07803

We’re clinging to our last bit of summer days while sneaking in pumpkin pancakes. I know I’m straddling two seasons but as I’ve always said, fall is one big warning sign that it’s about to get VERY cold and after this last New England winter. I’m pretending we get to reset back to the beginning of summer while secretly longing for maple lattes and leaf peeping. Here’s some more fun summer pictures:

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Refreshing Honesty

April 6th, 2015

DSC05136It’s been a crazy few weeks here but we’re finally back at the keys. We bought a house, scrambled to sell our house, had a sick baby which coincided with a million people traipsing through our open houses, got a bunch of offers, had a small bidding war, and then fled the country. Well, maybe that’s a bit dramatic but pretty darn close actually.

For our 7th wedding anniversary and my big 3-0, my sweet husband booked a getaway to the lovely island of St. Lucia. A great surprise and a good call on hubby’s behalf to recognize my severe vitamin D deficiency after a stupid Boston winter.DSC05168

Now we’ve traveled a bunch, this was seriously Cade’s 20+ flight in his short almost 13 months and his second international destination, but a one year old? Well that’s a whole different story. And he’s not even walking yet. But wanting to be caged, I assure you he let the whole plane know how he felt about his seat assignment. After delays and running through terminals and absentee Hertz agents, we found our way to our island home and breathed a deep sigh of relief. Our hotel room was bigger than our current home. DSC05238And that is not an exaggeration. It apparently came with the JetBlue getaways package. And although it looked like it was fit for a king it certainly didn’t cost it. DSC05489It was wonderful. A bathroom for each of us. 🙂 Cade had his own room which he refused to sleep in. So in our over-sized room with our over-sized bed, mom and dad got jabbed with his little nubs all night.DSC05379

Day one he hated the beach. Day two he loved it. Phew. I almost thought we had the wrong baby for a moment given my extreme LOVE for said ocean, waves, and sand in my toes. We knew once we arrived, after forgetting the travel torture, that it would be wonderful and it was. What neither of us was prepared for was how refreshing honest curiosity is.DSC05331DSC05284

You see we live in a society, in amazing America where people try to not offend others ALL DAY LONG. People apologize, walk a tight rope of public opinion and if you ever wanted to scare the pants off someone, well, you just say you’re offended. You can’t say certain words because that might offend certain people and you can’t wear certain things because, well that might be construed as offensive. That means you see something different…out of the ordinary, different than your normal and you stare (which is not wrong in and of itself) but you realize your error and QUICKLY, like a cat thrown into a swimming pool, glance away. We’re told to not stare after all, it’s rude. But it’s usually too late right? We see you. We see you recognize a difference, a deficiency and then try to correct your perceived error of perception. What if we turned it into a chance for conversation. How refreshing that would before all the momma’s out there who have little ones who are “different”. I’ve watched in mild amusement as old ladies sweetly try to pinch my sweet boy’s prosthetic legs because he’s wearing pants and you just can’t tell and then they stop, and look horrified. Were they offensive they wonder. There my friend is where it stings. And where refreshing honesty in curiosity blooms into something beautiful.DSC05403DSC05337

Every single local we met at the resort and on the island, got down on Cade’s level, spoke gently, lovingly to him and then turned to us and asked, “what’s wrong with his legs?” WOW. What the heck do you say? Let me tell you. Honest conversations about real life about things that matter and shouldn’t be avoided or perceived as possibly offensive. Let me tell you how amazing my little boy is. Let me tell you his journey, where he’s at in his physical therapy, how we’ve changed with his blessed life’s existence. Let me show you what he can do. Clap for him. Cheer him on. We all have something wrong with us. Something different. It makes us unique humans. And after refreshing conversation after refreshing conversation they look at us, smile and say, “and he’s doing just fine and that’s all that matters.” Ahhh. Breath deeply my soul.DSC05432

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We’ve gotten use to people starring and recognize that it is a part of our innate curiosity as humans. Clearly our baby doesn’t have feet and when his mother usually forgets shoes and there is 3 ft of snow outside, yes, you have every right to take a double take. That in and of itself is not bothersome. But then please don’t look at me, realize your error in horror and avoid me like the plague. Embrace the conversation in the unique. Oh that we would all take a little more time and a little more interest in the unique and beautiful things in our paths. I bet we would learn a lot. I bet we would walk away changed and I bet children who physically look different would have more confidence and be more empowered to run a little further, skip, smile and dash through this earth with their own kind of wonderful.
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Reaching for the Stars…or iPhones

February 9th, 2015

DSC02970Oh boy. Oh boy indeed. Our little Cade is an adventurer, troublemaker, a bonafide reacher-for-the-stars, or iPhones and we just took his 11 month pictures (a hard feat now that he wants to eat the stickers rather than wear them, although we did manage to stick it to his head without him noticing). I can barely believe that we are closing in on his first birthday. This last month he’s learned how to point saying “Oooo”. He now points at everything.  He gives big open mouth kisses and says “mama,” “da da,” and “cah” (while pointing at cars going past the window). Which makes us laugh (and cringe) because it sounds a bit like a Boston accent. DSC03415DSC03764So besides being in the throws of first birthday party planning (which I am loving by the way!) we are also in the throws of winter, a horrible New England winter that the locals will likely be talking about for years. Snow, snow and more of it. I’ve never been able to stay home in snow without incredible guilt from work so being a mostly stay at home mommy now, means that even with all this snow, this winter is way more fun.

We are struggling a bit to figure out how to dress a baby in this weather. He hates snow. He hates being too hot. You can’t put them in their seat in a coat on without it affecting the safety of the straps. So you need to heat the car up first before you leave. We don’t have a garage. Try putting a very active baby down on the floor to go start the car, you come back to cabinets wide opened and rummaging. DSC03590IMG_2864DSC03611DSC03170Baby-proofing is slow going because I HATE not being able to get in my cabinets. Gracious. Grocery shopping, life, everything is slow going at the moment.DSC03715

DSC03075Cade is astounding us. Two weeks ago he pulled himself up to stand. We screamed so loud and with such excitement that we made him cry. Poor babe. But that was a moment we had been waiting for. He was early pulling up to stand at 6 months on his sweet foot and little nub but it took two months post bilateral Symes amputation for him to be comfortable standing now on his cute prosthetic feet. DSC03710And now that he’s figured out how much more he can reach, well, he’s a bit of a terror…trying to climb, take steps and get in to everything. And I mean everything. Mothering gets a whole lot more difficult when they’re climbing in bath tubs head first, trying to break down baby gates at the top of stairs and generally pulling all sorts of stuff down on their head. DSC03690Watching Cade reach all these big milestones makes meDSC03913 day dream about those first unassisted steps. What a sweet little victory that will be. One that I don’t think is too far away given his propensity to blow our minds. A huge milestone for any baby, but for a baby doing it on prosthetic feet, well there will certainly be tears from this momma. Happy 11 months sweet Cade, adventure on little man, we’ll be celebrating your AMAZING first year soon.DSC04042DSC04040DSC04051

A New Year, An Unrepeatable Gift

January 15th, 2015

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It has been quite awhile since we offered any updates on Cade’s progress and journey with his prosthetics. It’s a whole new year even! We’ve (Cade and I) have been hunkering down photo 3 (3)in lovely Napa, California for the last month while my husband freezes his poor tushy off on the East Coast. I feel like an 80 year old snowbird as I cling to time on the sunnier (warmer) side of the world. But there is something to be said about being able to walk barefoot to the park and not take vitamin D drops, as much as we’ve missed our friends, church family and frost bite. photo 2 (5)

This Napa time has given me moments to journey into reading the Bible in chronological order (a resolution) and work on organizing too many pictures in preparation for Cade’s first year photo book. We’re using Artifact Uprising. Stay tuned. We’ll show you the final product.

Time out of our norm can be delightful and equally frustrating. Nana and Poppie’s house is much bigger than our little cape which equates to trouble in baby language. We’ve rubber banded the kitchen cupboards, gotten all the baby fences out and he’s still trying to escape out the doggy door. If there was one word that defines my baby more than any others right now it would be persistence. Offering distractions and screaming “danger” means try harder to get back to whatever I was doing before mom seized me. The little bugger.photo (4)

So in that spirit of delight and annoyance at my overly persistent 10 month old (yes 10 months, allow me a second to wipe the tears and pick my heart up off the floor, HOW is he 10 months already?) I’m refocusing my heart on recognizing these are NOT days to simply be gotten through, no, these days are an unrepeatable gift. Tomorrow will never be like today. I want to relish a moment in the simple patterns or lack there of. DSC02630He is still not sleeping through the night, has never taken consistent naps, eats differently at every meal and can be moody or wonderful. I think i’ve just been waiting for this magical moment when everything falls into place. That moment you suddenly feel like you know what you’re doing. That moment your baby suddenly says, “Ok momma, for 10 months I’ve not given you enough sleep but guess what, starting now I’ll be that picture perfect, sleep-trained, king of the naps baby you thought you’d have.” I need to rest in the present moments I have with him for they will never again be exactly the same. For all of us, each day is an unrepeatable gift. The good the bad, the wonderful the frustrating. Tomorrow will be different. I want to resolve to live more in the present in this new year.photo 5 (3)

As for our little monkey, he has now had his first set of prosthetic feet for almost a month. He is standing up on them well, bearing all his weight while holding onto objects or our hands. He has taken a couple wobbly steps from the stable object to say an open hand if he really wants you. He has not mastered getting down from standing back to the floor however, he either sits back hard and falls on his bottom or he tips forward and into a push up/onto his head. And I think in the last week he has realized that the prosthetic feet really slow down his turbo crawl so he’s been getting more annoyed as you attempt to put them on him. Arthur said that would happen. That until he realizes standing and walking is better than turbo crawling, he might throw a fit. I’m bracing myself for the fit because Cade wants speed. He wants to get to the dog’s water bowl as FAST as he can so he can stick his face in it and mimic how the dogs drink. It’s great, this 10 month exerting independence phase. But today is an unrepeatable gift and I will embrace them realizing just how beautiful these moments are, these unrepeatable daily moments. Happy New Year friends.photo 1 (4)DSC02356

All I Want For Christmas Are These Two Sweet Feet

December 16th, 2014

DSC02098So the shoe shopping was a bit harder than expected. I even took Saturday off of work to go downtown with Matt and Cade. Our goal was three-fold: 1) Find our baby some adorable first shoes 2) Get in the holiday spirit by enjoying the Christmas decorations in the city and 3) Make Cade cry then put him quickly into Santa’s arms for an epic first Santa picture.

Whelp. The downtown mall was surprisingly void of baby shoe places. Our one choice, Jack and Janie, had no shoes that would work. We learned quickly that baby Cade needs lace up shoes or a highly elastic upper part of the shoe in order for the prosthetic foot to slip in. We found one pair in Baby Gap that would have worked but I just couldn’t commit, it didn’t seem special enough. I ended up feeling lousier and lousier as the day wore on ending up with a fever, chills and sore throat by that night (NO fun!), Santa had gone home for the day by the time we found him so that didn’t pan out and some of the Christmas-y atmosphere Boston is usually pretty good at was diminished by protesters lying in the streets.

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So as sad as dad was to not go shopping for shoes, momma and Cade headed to Nordstroms today. Ahhh. Nordstroms. Now we’re talking. Shoes, shoes, sneakers galore and then I spy them…baby moccasins. Freshly Picked sweet little brown moccasins. And they fit. The tab part is fully elastic so they slipped right on. I know I know, cute and expensive but just how practical are they Jackie. Now clearly they don’t have grip on the soles so I went ahead and bought a back up pair of navy Converse sneakers. But I am not sorry for giving in to the cute shoes because he’s a baby and this is the first pair I’ve ever gotten to buy. Sorry hubs, no Air Jordans at Nordstroms.

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Cade and I went straight from Nordstroms to NextStep Prosthetics. Arthur and his coworkers are working VERY hard and VERY quickly to get Cade’s first set of below the knee prosthetics ready by Friday when we leave for California. Because the grandmas said all they wanted for Christmas were Cade’s feet. 🙂

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This last Friday, they took the casts of Cade’s lower legs wearing his silicon liners and today Arthur was fitting the liners into a plastic socket that was created using those molds of Cade’s sweet little legs. At the end of the plastic socket, the little prostethic foot is attached via screw. My cute husband actually thought he’d get to use a power tool every morning to put Cade’s feet on. Oh dear. No honey, no drills on the baby please.

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NextStep Prosthetics has engineered a little velcro strap that attaches the silicon liner to the plastic socket so the leg doesn’t fall off. Brilliant! It is on the outside of this plastic socket that our creativity gets to come out, well, until Cade has an opinion, SO I’m soaking up these days of momma-approved prints because if he really is my child, he’ll be very opinionated. We can choose ANY fabric print from Joanns Fabrics or even from Cade’s outgrown clothes to add a pattern to the leg. Matt had the idea to use our favorite pair of Cade’s PJs. They are cream and have the word “Hi” printed all over them in grey. Many a night we poked Cade all over saying “Hi Hi Hi” and he would squeal. Sweet memories, and now it will be on his first set of prosthetic legs forever. How very perfect.

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On the sentimental side, both Matt and I had to hold back tears when we saw Cade with feet on the ends of his legs for the first time. What a moment. I’m reminded by how tall this mountain looked from the bottom. Those early pregnancy days when I thought, “there is no way I can scale that. I’m just not strong enough, brave enough, capable enough.” And now standing near-ish the top, I look down and see that sack of tears and think, “I did it. I came through that. AND more importantly. I’d do it ALL OVER AGAIN.” Because one hearty laugh from that blue-eyed baby and I want to bite him he’s so cute. I reminded ONCE AGAIN that we ALL have situations like this. Situations that place us in front of a mountain. Climb it my friends. It’s a beautiful view.

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“Taste and see that the LORD is good. Oh, the joys of those who trust in Him!”                   –Psalm 34:8

And then there were feet…

December 6th, 2014

DSC01525Matt and I are still smiling. It feels so good to be on the other side of the surgery…to be in the land of recovery, liner fittings, and great visits to Next Step Bionics and Prosthetics in Newton, Ma, where we were today.

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Arthur Graham

Arthur got the liners in and wanted to get Cade fitted so he could wear them over the weekend. It’s going to take practice on our part to put them on properly and incorporate it into our routine. From what I can gather, it looks a lot like putting on panty hose. Try explaining that to your husband. 🙂 I’m thankful for Matt’s consistency in attending all the appointments, it feels more doable with him around and then he can see Arthur put things on Cade and I don’t have to explain my panty hose analogy.

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Our little trooper still has healing surgical wounds and sutures that haven’t dissolved completely yet. One thing I don’t think I expected in this recovery window was how much dry skin he’d have on his lower legs and new stumps. It’s peeling off every time we put a sock on or slid up his compression stockings. His lower limbs are still tender but Matt tickled his little stumps yesterday and Cade giggled. DSC01513

Bless Arthur’s heart. He’s so patient with Cade. We are thankful. And today he handed me a little foot. The teeny little foot that will go on the end of his prosthetic boot, once that is made. Now the fun begins. Shoe shopping. It seems pretty trivial in light of all that has happened thus far but having never bought a baby shoe before, we’re pretty excited. As we were leaving I asked Matt what shoes we should buy. photo (2)Without hesitation Matt exclaimed, “Air Jordans.” Really? Air Jordans? I was picturing cute little baby moccasins or Toms. Something soft and teeny. We’ll see. But our hearts are joyful as we move further in this journey. Thankful for continued healing, support from friends and family and the experts that will make this journey easier.

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Embracing Thankfulness

November 27th, 2014

Happy Thanksgiving!

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I think more than ever we ALL need to be thankful. At least for my immediate family, this year deserves to be remembered and viewed through the lenses of eternity. Our world can quickly become consuming when we look only through the lenses of the news media outlets or social websites. We get caught up and emotionally charged and ultimately lose sight of eternity, and it is that vision of eternity that allows us to see thankfulness, live thankfulness in ALL of our life stories.

DSC01082 DSC01374We are 3 weeks out from Cade’s bilateral Syme’s amputation surgery at Children’s Hospital in Boston. He is doing well, still not bearing weight on this new stumps but he doesn’t scream about accidentally banging it on something anymore. We were suppose to have his first prosthetics appointment yesterday but got 3 inches of snow that shut the world down. So tomorrow morning we have his first appointment and we are SO thankful to be on this side of the journey.

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We are thankful for our friends, family, food on our table, a heater (stupid snow!), my hubby’s birthday (29 today!) and our sweet baby. Thankful for happy memories of our fur baby while blotting tears that we’re not outside throwing snow balls for her today. So thankful. I choose to stay in this spirit of thankfulness as I continue to process my life story. I choose thankfulness.

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Psalm 30: 11-12, “You have turned my mourning into joyful dancing, You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to you and not be silent. O Lord my God, I will give you thanks forever!”

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Halloween (or some mean joke people play on new mothers)

November 2nd, 2014

So I learned a few things last night, eight to be precise. And now I pass them on to you. I’m just a ball of wisdom these days. Soak it up people.

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And there you have it. A lion, a tiger, a bear and “Oh My” printed in 4×6 glory.

(1) You’re likely going to get easily frustrated when you have a Pinterest idea floating around your head and you can’t pull it off because your turd (ahem, I mean child) is going through some developmental leap or teething and screamed ALL DAY LONG.

(2) You should probably NEVER EVER go to a Halloween store on HALLOWEEN, you will likely meet some weird people that you want to tackle or say mean things to, especially when baited by your screaming turd (whoops, did it again, child).

 

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Rocking Minnie Mouse’s ears, I mean bear ears people. He’s a bear. Good grief.

(3) You’ve married the right person when they leave you crying in the car to rush into CVS on a mission to find bear or tiger ears for your (Pinterest’s) stupid costume idea (even though you are already late to the party to begin with).

(4) It’s perfectly possible to cry big real tears while trying to cut stupid wrong color felt (mustard yellow) with dull kitchen shears.

(5) And it’s the wrong color felt because your stupid Michaels was out of the perfectly appropriate orange color (who runs out of that stuff on Halloween? Don’t they know orange costume emergencies make up 75% of their annual Halloween business. Good grief).

(6) Halloween is stupid.

(7) Maybe it isn’t Halloween’s fault.

(8) When you’re done crying about your first failed attempt at a group costume on your baby’s first Halloween, there is still CANDY to eat. And there in lies the silver lining my friends. CANDY.

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Minnie ears cut into a very definite tiger ear shape. Clearly.

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Thank goodness for friends who made that Halloween fiasco more fun then we could have imagined.

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Prior to being a brave little lion that had to deal with his parents all night, sweet Cade was a grouchy pumpkin. We love this little guy. Next year kiddo. Next year momma will get her act together a couple days BEFORE Halloween.DSC00352DSC00363

One Week Out

October 31st, 2014

Next Step 1Sigh. Grumble. Oh crap. How are we here already? I suppose that all comes to mind. We are officially moving into the one week countdown to Caedmon’s surgery. His big surgery at Children’s Hospital in Boston. We’re a mixture of terrified, optimistic, confused, hopeful and honestly just trying to keep on moving, breathing…functioning.

Today we met with Next Step Bionics and Prosthetics in Newton, Ma and they were calm to our terror, some solid ground for our journey ahead. They spent the afternoon with us, playing with Cade, showing us around their amazing property in an old mill building. They have a pediatric physical therapist in the same office and she spent a better part of half an hour playing with Cade. Matt and I were ever so proud of him as he dominated their play space. We knew he was on the earlier side of the continuum for crawling and pulling up to stand but they confirmed our suspicions that this little monkey of ours has a point to prove. Feet. Overrated apparently.

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They kept commenting on his upper body strength, core stabilization and agility. In fact the main prosthetist said we should mark our calender for the 2030 Paralympics. You hear that folks. Not even 8 months old and we’re talking about sports. I’m going to bask in these moments because I was so terrified to dream about the future for him for so long. I just didn’t know what it looked like. But being in this amazing office, touching those prosthetic legs, meeting the craftsmen and learning about the process really makes the breath come a bit more freely. Cade is going to be okay. He can do this. We can do this.

Psalm 77: 19-20 

“Your road led through the sea, your pathway through the mighty waters–a pathway no one knew was there! You led your people along that road like a flock of sheep…”Cade in Napa 3

Sometimes the path before us seems impossible. I felt that way when we first found out about Cade’s limb abnormality. Sometimes God asks us to walk through the sea. And our human heart and shaded eyes, well, they question. Sometimes God asks us to walk through the sea, straight into something we cannot fathom how it could possibly work. And then it does.

Today they also made a mold of his sweet little foot for us. We love his foot, those three precious toes and we are so sad to say goodbye to them. He is ticklish on his foot. He squeals when you tickle those little toes. And that makes it hard. We’ve been purposeful about letting him experience as much to life as possible with that little foot so we can say someday, you did have sand between your toes and a muddy foot. Dogs licked your toes and grass kissed your foot. Most recently we played in the leaves and he got to feel that crunch. Little things. Maybe they mean more to me than they ever will to him but if that’s how we get through it, then that’s what we’ll do.

So we’re praying. Playing. Breathing in life with our little boy as we enter the one week count down. Here are just a few of our fall adventures. And tomorrow is Halloween. He is going to be our brave little lion. We took those steps, we’re walking through the sea. We could not fathom it, but somehow, it is all going to work out.

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One Year Later

August 29th, 2014

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 Today is a big day for us in many ways. August 29th. I can barely believe it really. Barely believe it has been exactly one year since the grief came knocking and overwhelmed the joy of that sweet ultrasound. We had waited ever so long. Tried for all those years to have a baby while babies seemed to be falling freely from the heavens on all those around us, even those I decided didn’t deserve it. I was 12 weeks, 3 days pregnant and this was our 2nd precious glimpse of this God-given miracle. And then she said it, the doctor…right there in that room, that seemingly sacred space and darkness of an ultrasound, “I don’t think I see legs.”

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It was quite simply like falling into a vortex. One minute you’re on solid ground. The next, you’re falling uncontrollably down into a darkness you have not known, into a place no one could have prepared you for; a spinning, wobbling uncertainty that pulls your heart apart like a centrifuge. Of course she must be mistaken, right? Who doesn’t have legs?

 

Well, my baby apparently. It seems fitting then, for today to be the day my chubby almost 6 month old baby boy, hubby and I are getting ready to board a plane on our first great overseas adventure. Cade, you have some crazy parents. Just wait my son, just wait and see where you can go with those silly feet. I hope great things over you. That you get to climb the fjords of Norway on your own two legs someday. But what a difference a year makes. I could never have imagined a year ago today that we would be okay. As okay as it can be I suppose. That there would again be light, that there would be travel and smiles in our future. It seemed too dark at the time. My husband likes to say, “see I told you” in reference to things turning out okay when my doom gloom heart can’t see it. But what he doesn’t realize is that EVERY mountain appears too tall when you’re standing at the bottom of it. Every grief journey seems to be unbearable, never ending, when you’re in the midst of it.

 

DSC06371I’ve been mulling over this journey quite a bit in recent days because grief seems to be everywhere. All over the news, in everyone’s life. In fact I’m fairly certain everyone’s got some anchoring to it or will. Some are currently so deeply entrenched in their own grief they see only their own faces, others are on the cusp of it and afraid to see it lurking there in the shadows. I am blessed to get to hold my babe, and cuddle him and be his momma. But I also have the lurking grief of watching him live in this hurtful world (“mom why does that baby not have feet?”) and will all too soon hand him over to a medical team that will make him different in ways I do not want.

 

This is a hard place to be. To live within the tension of the ‘here and now’ and ‘not yet been.’ To exist on a plane of recognizing he is mine, only for a time. And soon, all too soon, he will be made different for a purpose, for his future. Surgery to allow him to be active and dare I say, normal, although I hate that word. This whole process sucks to be completely honest. There are days I hold his sweet foot in my hand while he is nursing and I want to scream up at God. Who does this to a person? How am I strong enough for this? For fear of sounding dramatic, there are freakin feet everywhere. Perfect 5 toed feet. Heck, I look down and there they are. People put their children’s feet on shirts. They complain about how quickly they are outgrowing their shoes. They make Christmas ornaments out of their foot prints. Maybe I’m overly sensitive. I think that’s probably it. But on November 6, 2014 the doctor’s at Children’s Hospital Boston are going to take my babies’ foot away and that is still a hard pill to swallow. Because he only has one. Because I love him the way he is. Because those three toes are perfect to me.

 

So today, one year later, I remember kind words, the sacrifice of friends and family, hugs given, grief shared, and the many tears fallen. I remember where I was and the journey between. I look at this smiley, chunky boy and lift up praises to the One who allows him to be. I am thankful for his time in my life. I continue to hold the gift of my child in balance with the grief humanity experiences and ultimately as C.S. Lewis writes in A Grief Observed, “I need Christ, not something that resembles Him.” I need to remember now and forever more that there is nothing in this whole world that fills that hole in our souls. Not perfect feet. Not ten perfect toes. Not a perfect existence free from pain and suffering. Not climbing high into the Fjords of Norway and showing our baby boy, for the first time, that life is an adventure and there exists awe wonder at ever turn if you purposely choose to see it. Dig down deep into life, climb up tall mountains, baby boy. Persevere. And see where this next year takes you.

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Grace and The Momma Bear

June 27th, 2014

DSC02387I watched those dull, questioning eyes see my son. In a flicker there was curiosity, perhaps confusion. But to me it seemed harsher than curiosity, more intense then confusion and frankly, downright rude. My mind catapulted forward—condemnation, judgment, harshness—descriptions, labels I immediately tacked on to that gaze. And then I felt it stir, rippling deep in my soul. Like a rusty engine revving up…the awakening of the momma bear.

I knew it was there, I knew just the spot it resided on my heart. I suppose every mom knows; this fierceness, these emotional arms of protection inside of you that sweep over your little babe, the desire to be a shield, to take on the weight of the world so that that little one remains safe—physically safe, emotionally safe. And I had been afraid of this; afraid of just this scenario after starting that precious journey of processing my babies’ diagnosis all those months ago…that look.

I knew someone someday would give him one, and I knew just how my heart would respond. I had been purposeful that day to not hide his legs in a blanket or footsie pants, something I was feeling more and more comfortable with, dressing him with intention.  I am not ashamed of my sweet boy, but I had wanted to avoid the gaze and to a certain extent–the potential attack of the momma bear.DSC01988

I felt the momma bear awakening, rolling in….bigger, more intense like a rising tide amid a foreboding storm. I could feel myself getting bigger, rising up. Now I’m not a big person, clearly. Nor do I have any knowledge of karate. But in that moment, momma bear awakened…well, I wanted to take that lady down. We were in REI and I was feeling, well perhaps bolstered by all the hiking backpacks and bazillion socks that make you invincible in any sport you choose to do. The blood coursing through my veins was screaming, ” you got a problem lady?” and ” what, we’re you raised by wolves or something”.

 

Then it happened, the whispering in my soul…give her grace.

 

Grace? Are you flipping kidding me…Grace? Oh I’ll give her something…right between the eyes. Grace. Give her grace. I deflated, momma bear slunk back into the crevice home in my heart, shoulders sank and my grip on my greatest blessing tightened. Give her grace.

Now there does not reside great mountains of philosophy in my soul, I’m not the wisest, most knowledgeable. I’m not the most articulate or educated but I am naturally curious and I have attempts at mustard seed faith that float me through these hurdles of life…pulling me along and not letting go. Give her grace. And I realized I didn’t know exactly what that meant. But what I knew instantly was that grace was bigger, better than a pop in the nose. She didn’t deserve grace. But then neither did I.

Grace…unmerited favor, undeserved love and goodness. The “it” word in Christian faith but probably the most misunderstood…you see we use that word to mean different things…a prayer before dinner or “grace periods” with new jobs or bills. I mustered a crooked smile, gazed back at that lady so she knew I saw her, then turned and walked the other way down the aisle. Give her grace. What is grace?DSC04107

Whenever I’m in a “make you feel small place”—you know them, they fill our national parks, the slopes of tall mountains, for me the rolling plains of middle of nowhere America or Giraffe dotted Rwanda…I can feel it…that grace, it’s even bigger than this. Ephesians 2:8-9 “For by grace you have been saved through faith. And this is not your own doing; it is the gift of God, not a result of works, so that no one may boast.” Or Hebrews 4:16 “Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.

For me it’s mimicking what has already been done for me, emulating my Lord, His sacrifice for an undeserving commoner like myself. I could spend a thousand years attempting to understand grace and I wouldn’t have even scratched the surface. Grace is wider than the oceans, higher than the highest of heavens…it’s all encompassing and when it fills you even a smidgen full, it allows you to look an undeserving lady in the face and give her a smile rather than a pop in the nose. Thank God for grace. I want more of it and it makes me wonder. What if we went through our day like this, giving grace out freely to all those undeserving folks we encounter daily…the rude drivers squeezing there way in front of us to make it just one more car length ahead, those impatient, snappy people in line at the grocery store. Those outspoken souls that grate against our more noble sensibilities. What if we lived life giving grace out more freely…well I think it might just change things or better yet, us. Give her grace.DSC03525

2 Timothy 2:1 “You then, my child, be strengthened by the grace that is in Christ Jesus.”

 

He’s Here

April 3rd, 2014

IMG_4237Our sweet little boy entered the world on Friday March 7, 2014 at 4:52 am weighing 7 lbs 2 oz and we are overjoyed to finally meet him.

It’s been an anxious journey, an excited journey…a prayerful journey and to actually see him and meet him has been the most precious experience. Every wisp of hair, every eyelash, every feature I love, even those affectionately named “Pretzel legs”…I feel like I have known him already for a hundred years  Welcome little boy.

Our little guy came quickly and a couple days before his due date (March 11th) abiding by that eviction notice I gave him weeks ago. The day before his arrival and at the last OB appointment I had been 5 cm dilated and 100% effaced…concerning my OB enough that she wanted to induce me. Thankfully my momma hopped right on the plane!

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By that evening the contractions started and from the start to the final push, just over 12 hours of labor. Five quick pushes and he made his arrival. Our dear friend picked my mom up at the airport after taking a red eye across the country and she arrived just two hours after he was born.  I hadn’t shed a tear until my mom walked in the hospital room. What a marvelous blessing getting to see my mom hold our little boy.

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Snapshots of Pregnancy

March 27th, 2014

Now that I’m sitting here comfortably on the couch with a sweet little baby in my lap and without the back pain that plagued me throughout pregnancy making just this sort of leisure virtually impossible, I’m going through the pregnancy pictures we took and realizing JUST HOW HUGE I was. We started taking pictures at 6 weeks pregnant and although we didn’t capture every week for various reasons, it is fun seeing the progression of the belly bump and I’m glad we did it.

They document such a monumental time in our lives and you can see the emotions in the pictures. I’m caught by the 12 week picture, how blissfully unaware I was of any pregnancy woe, just a few short days before we found out about baby Cade’s lower limb abnormality and Fibular Hemimelia entered our world. The next picture isn’t until 22 weeks and you can almost see that recently traversed grief journey in my eyes. It had taken about 3 months for me to want to smile again in a pregnancy picture and I almost wish I could go back, tell that sad me that everything was going to be okay, that soon there would be a little boy with exquisite blue eyes who would gaze up at me stealing away my heart to the land of mommyhood. And I’m reminded gently by our patient God that all of our various life woes and trials will eventually be okay–that these momentary afflictions will give way to a glorious eternity with a gracious God who loves us.

And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” –Revelation 21:3-4

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Baby Cade’s Vintage Nursery

March 25th, 2014

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Baby Cade’s nursery was a labor of love and a beautiful distraction amid an emotional pregnancy journey–a special time filled with my sweet dreams for our little blessing. Thank goodness for Pinterest and Etsy and their inspiration. I knew I didn’t want “baby baby,” no soft blues or a Noah’s ark wallpaper border.  I wanted a classy little vintage bungalow for our little man that was inspired by a flea market find…a rusty, vintage radio flyer wagon.

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It is a combination of handmade, salvaged projects, Craigslist finds and fancy splurges…as any good room should be.  And it started like all the rooms in my home…with a good fabric or pattern. I found the fabric on pinterest or google (who can remember at this point). I then scoured the internet for the best deal, eventually buying 15 yards of that beautiful Suzani Nile Denton fabric for less than $125. I sewed the window panels and crib skirt with the help of my sweet husband…he kept my sanity and prevented the sewing machine from being thrown through the window and ending up on a snow pile.

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I knew I wanted a nice glider, so that is where we splurged, we bought that beauty from Restoration Hardware Baby. I wasn’t sure I’d be sentimental about a crib or would want to pass it from baby to baby (if we are so lucky) so I found a screaming deal, a beautiful weathered grey crib by Million Dollar Baby bought on cyber Monday following Thanksgiving, $350 and free shipping. The dresser we found on Craigslist for $50, painted it, sealed it to make it glossy and added whimsy with cute drawer pulls and knobs from Anthropologie. Matt built a reading nook from white plastic rain gutters…a $15 project that we can’t wait to utilize, we already find ourselves cuddling baby in the nook. What fun!  Hope you enjoy it and are inspired!

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How A Name Found Our Little Boy

March 24th, 2014

nameThe chaos of early pregnancy, those frequent doctor’s appointments and ultrasounds…the fear and deep grieving for our little boy’s abnormality, made it impossible for me to dream the way normal parents dream…about names or nursery ideas. It all seemed so carefree and trivial, I was trying to just survive, to not be washed away with sadness, preoccupied simply wondering if my small baby was going to be okay.  At those early ultrasounds however, especially the 15 week one at Children’s Hospital, I was struck with how active my little babe was.  How strong he looked, flipping around, ping-ponging off every wall of his womb. He seemed like he was trying to tell me something, that he was a fighter, our little warrior. Ready to tackle the world, ready for the adventure of it all, desiring a chance at life. I honestly don’t remember doing it but I know I did, I know in a quiet moment and to myself I googled names that had “warrior” or “fighter” in them and Caedmon was the first to come up. It captured my heart and was almost as if our little boy named himself.

Caedmon is an Old English name that means ‘wise warrior’. The only time I had ever heard the name was via the Christian band, Caedmon’s Call. Which only sparked a treasure hunt of sorts–why on earth was a Christian band named Caedmon’s call? Apparently, thanks to some internet searching, Caedmon was a shy Anglo-Saxon cow-herder who lived during the 7th century. Legend has it that Caedmon was embarrassed to sing in public due to his belief that he lack musical talent, avoiding occasions where he had to sing. After leaving a feast one night, he lay down in the pasture to sleep. An angel appeared to him in a dream, calling him to sing. After refusing, he eventually decided to sing and when he did, he sang beautiful verses that had never been heard before, based on the story of creation and using the style of pre-Christian, Anglo-Saxon poetry. It is the oldest example of Old English Poetry in existence and a praise to our Lord.

 Now let me praise the keeper of Heaven’s kingdom,
 The might of the Creator, and his thought, 
 The work of the Father of glory, how each of wonders
 The Eternal Lord established in the beginning. 
 He first created for the sons of men
 Heaven as a roof, the holy Creator, 
 Then Middle-earth the keeper of mankind, 
 The Eternal Lord, afterwards made, 
 The earth for men, the Almighty Lord.

My husband took me to Cape Cod as a sweet distraction from all the pregnancy chaos after that week of appointments at Children’s Hospital.  I had already been calling the baby Caedmon or baby Cade in my heart. So on the way home and with some light-hearted jesting my husband asked, “so should we begin discussing names?” To which I replied, “I already named him.” My husband, mouth open, a bit blindsided sputtered, “well spill wife! What is my son going to be called?” So I told him and he loved it and that was that.

Caedmon James Kleker, our sweet little boy.

Finding Some Clarity

March 17th, 2014

photo 1The 14 week ultrasound confirmed an abnormality with our little boy’s lower legs. He appeared to have femurs, the upper part of the leg but it was unknown as to what was really happening. They referred us to Children’s Hospital Boston where we were seen the very next week. At 15 weeks pregnant, the ultrasound technician was quite infuriated by our vivacious mover. She grunted and huffed under her breath about trying to get pictures and them just being blurs because he was moving SO much. That just served to increase my heart rate, probably making baby boy squirm even more. It was the first parenting moment my husband and I had, both wanting to put the little baby in a time out for being naughty and not cooperating with the lady. We came back to Children’s Hospital later that week and met with Dr. Kasser, pediatric orthopedic surgeon and his team to discuss the ultrasound findings.

Our little boy was diagnosed with Fibular Hemimelia, the absence of the fibula bone in both of his lower legs. His right leg had what appeared to be simply a ‘nub’ and his left leg had a foot but it was oriented differently and did not have 5 rays. They reviewed probable treatment options but were quick to conclude he’d have to have xrays and ultrasounds when he finally made an appearance for a definitive diagnosis. The probable treatment options were either: bilateral lower limb amputations at 6-8 months old and bilateral prosthetics or multiple reconstructive surgeries to his left leg and a prosthetic to the right. Not quite the journey to mommyhood this momma-to-be had long dreamed of. Leaving that appointment, we were buoyed by Dr. Kasser’s optimism and kindness and my husband’s light-hearted jesting about how our kid would have extender legs and be the best basketball player on the block.  Some rays of light were beginning to shine through.

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The 12 Week Ultrasound and a 2 Week Wait

March 17th, 2014

Back in Boston from time in California with my family, we eagerly waited for the 12 week ultrasound.  The 7 week ultrasound had confirmed just one sweet baby, a little too peanut shaped for my liking, I was hoping for something resembling a human being with this elective ultrasound.  It wasn’t designed to give me another peek at this babe, it was ultimately designed to find problems with the baby’s development, to diagnose chromosomal abnormalities early.  For 30 precious, blissful minutes we watched our tiny baby dance around the screen, active, strong, perfect, and unencumbered by a diagnosis or at least hints at one. AND definitely a boy in both my and Matt’s mind, he seemed to want us to know that. Then the doctor came in, Dr. Dunn…just about the sweetest lady in the whole world. She looked at the baby confirming measurements and then zeroed in on it’s legs saying, “something doesn’t look quite right with the legs.” She moved the ultrasound wand all around having me shift and squirm to make the little baby move. She ultimately concluded that it was just too early and the baby was too small to see clearly what was going on but she would be “doing us a disservice by saying everything was okay.” It was her professional opinion, at this point in pregnancy, that you should be able to clearly visualize a baby’s lower limbs. All we could do was wait two weeks.

Shaken, crushed, shocked, overwhelmed…you name it and we felt it. We clung to each other as they ushered us into the genetic counselor’s office. At 27 and 28 years old, why were we even sitting there? It felt wrong. She drew a family tree and made us recite our family history, asking question after question. She then explained a test they’d like to do called a fetal DNA blood test. At 12 weeks pregnant, some of the baby’s blood was mixed with mine and they could analyze my blood to siphon out the baby’s blood cells for DNA and ultimately confirm the presence of the major chromosomal abnormalities. We consented, they took my blood and then called two days later–the test had come back negative for any chromosomal abnormalities and definitely positive for a little baby boy.

I sunk down and huddled there, in the dark recesses of grief. Our dear friends cried with us, held us and prayed with us. And prayed and prayed. How do you endure two agonizing weeks of unknown and with it actually happening inside your body? Only in the hands of God…and we believe in a mighty God, a God of miracles and healing, I tried so hard to believe He could heal this babe. But I never actually believed myself worthy of that healing. I visualized the bleeding woman reaching out a feeble, hidden hand for the tattered edge of Jesus’ garment. That is what I wanted, unworthy and ashamed of my lack of faith, I wanted to try and reach Him without Him noticing. That two week wait, it was around that time I shut down–a way of coping with something so much bigger than myself. I stopped eating, at least eating well…I stopped sleeping, at least sleeping well. I prayed over and over again, ‘Lord take this baby or make him well.” I could not, would not, visualize myself raising a baby that didn’t have legs. How would he sit up, take a bath, get married, run?  A whirling spiral of negative, hopeless thoughts that tried to overwhelm. If there had been no faith in my bones, no faith in a mighty God who hedged me in behind and before all my life, keeping me on HIS path, I would have thought more seriously about “getting rid” for lack of a better word, that sweet baby growing inside. But how could I possibly do that? How could I? It was literally a miracle there was even a baby in my womb to begin with. And this little baby…he kept fighting on.

This was around the time when I realized that I was married to the most amazing man in the whole world…a man who floated me through this dark ocean of doubt. Friends brought donuts because how is a pregnant dietitian going to resist those…she might refuse to eat salad but donuts, that’s another story. And many, many people prayed for us and held us close. And we endured the two week wait.

The Journey to Mommyhood

March 13th, 2014

It started with some baby dolls, perhaps a few hundred Barbies, as long as I can remember, the desire to be a momma has just existed as a facet of me. I recently had a flashback to those long ago days of circling all the baby necessities in the Bitty Baby section of my American Girl magazine as I stood exhausted and overwhelmed in the bottle aisle of Buy Buy Baby, fulfilling my real life baby registry. It seemed much easier in those days, but then again, my Bitty Baby came with her perfect bottle, I didn’t have to decide on wide nipple bottles vs standard flow. When did the journey to mommy hood get so complicated? I guess the whole darn thing has been complicated.

Our desire to be parents has always existed.  I remember the day after my wedding, my sweet new husband asking, “so when do you want kids.” And my response, “Um someday you weirdo, we just got married.” Who would have ever thought it’d take two years after finally getting to the point of being ready and LOTS of medical intervention to realize that sweet shared dream of ours.

We found out I was finally pregnant July 3, 2013, the day before the 4th of July. I was in California with my sweet momma, helping out as best I could after finding out she had been diagnosed with metastatic breast cancer. Not the ideal time in life but perfect according to the good Lord’s timing…a positive pregnancy test to bolster all of our spirits, breathing hope into our days and allowing dreams to start flowing…boy vs girl, colors for a nursery, could it be twins!  All sorts of fun things to think and dream about. The pregnancy cravings started early with the strong desire for all sorts of salty items…mainly ranch dressing and Caesar salad. Of all the things for a clinical dietitian to want to eat…I could have literally squeezed a bottle of ranch dressing in my mouth and been a very happy camper. We tried every old wives tale in the book, all pointing at a little baby boy, which made me a bit mad, I was clearly having a girl. All those old wives had it wrong. We eagerly waited to see the progression of food items my little baby embodied in those early weeks…a poppyseed to a grain of rice to a blueberry. It was carefree and beautiful, how I’d pictured the journey to mommy-hood being. And then it all changed, in the blink of an eye.

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