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

What do you say?

February 7th, 2017

Sweet boy. Today you are exactly 1 month away from turning 3. You are inquisitive and lovely. The questions roll in all day. Questions about the sky and trains. Questions about things that make you chuckle. We have a computer in our kitchen–momma’s workstation and it resorts to entertaining us with an endless stream of photos. You love to watch them go by as we eat our meals. And you ask questions. What’s that? Why is that happening? Can we go on an airplane today?

Today a picture you hadn’t seen before popped on the screen. And it had you questioning and me searching for words. You saw that beautiful picture of your legs weeks after surgery at a post-op appointment. They looked raw and healing. You were on the exam table. And you questioned me. Today I wasn’t prepared for it. Eggs were burning on the stove. Kai was screaming because I wasn’t moving fast enough. Dishes everywhere, crumbs flying. Real life people. And I had to pause in that chaos and give you an answer. What on earth am I suppose to say to “momma what’s that?”

Here’s what I said, “Oh Caedmon. That’s a beautiful picture of your legs after you had surgery when you were a baby. Your body was healing”

Cade: “but why?”

“Well (swallowing hard), you were born with a sweet little foot on your left leg. It had a big toe and two little toes. And we loved it. But it would have made it hard for you to run like the wind. It was missing an ankle joint like momma’s foot (pointing to my ankle). So Dr. Kasser at Children’s Hospital helped give you strong, straight legs that fit nicely in your prosthetics by taking away your foot.”

 

Cade looked satisfied. But it didn’t feel right yet. I was still uncomfortable. To make myself feel better I said, “God made you exactly how he wanted you so that you could do great things.” And his brows furrowed for just a split second and he said, “can I be excused please.” And I cringed. For whatever reason those words stung me too as they left my lips. And my invisible hand did what it always wants to do. Shake my fist at the sky and say “why. Lots of people do great things with two legs. Why does this sweet little boy have to deal with this?”

So, why does that bandaid phrase suck so bad? And why was I uncomfortable as his momma? All I can think of is that that phrase is a platitude that masks the real conversation and ends what could be a beautiful conversation about the not so beautiful in life being made lovely because we have a great God who redeems. Because good can and DOES come out of the not so lovely. But we smack that sentence on a deep feeling of wrong or a deeply held feeling of entitlement for what we name as good.

Everyone has something that holds them back. Whether your eyes aren’t so good, you’re battling depression or anxiety or weight has always been an issue. Perhaps you’re crippled by fear of failure or don’t see the innate value you have as a human being. We battle an almost constant influx of fears and failures. Or we really do have physical limitations that prevent us from running like the wind. We battle society and “norms”, our expectations or those placed on us by another. We battling aging bodies.

Do I really believe that Cade was made specifically to have a physical abnormality or do I rest in the understanding that we live a broken world where things are “not quite right” and this in turn, if we choose to see it, points us heavenward to a hope of perfection and unity with a creator who actively loves His creation. You see I can’t wrestle these deep questions for Cade without confronting the spiritual aspect to human beings. And we do our best to glide through life not confronting these sorts of things because they are uncomfortable or it’s deemed by our society as politically incorrect. But we do ourselves a disservice if we do not dig deep and search. Because what if there is more?

Here’s what I wish I would have said:

“Sweet Cade. You asked me why you had healing scabs on your legs and I explained why you had to have a surgery. We are blessed to live in this time when prosthetic legs are so good. Mr. Arthur (our prosthetist) does a great job making sure you can run like the wind and you will find that you are able to do just about anything in life because of these great gifts. I want you to know that you are not alone. Every single person is battling something, sometimes it isn’t so obvious and people hold their hurt and differences deep inside. You will find through life that things might be a little bit harder or you might need to do things in a slightly different way because of your leggies. But I promise it isn’t forever, we live in this world for a set number of days but we have a hope that the God we love has made a way for us to be with Him in a perfect place where prosthetics aren’t needed. While we are here we seek to do good all our days, whether we have feet or not. We choose kindness, we choose to love, we choose to give our energy and resources to make this world better for everyone. You have the remarkable opportunity to bring God glory because you do not have feet. Just like I have the remarkable opportunity to bring Him glory because I do.”

John 9: 1-4 “As Jesus was walking along, he saw a man who had been blind from birth. “Teacher,” his disciples asked him, “why was this man born blind? Was it a result of his own sins or those of his parents?” “It was not because of his sins or his parents’ sins.” Jesus answered, “He was born blind so the power of God could be seen in him. All of us must quickly carry out the tasks assigned us by the one who sent me, because there is little time left before the night falls and all work comes to an end.”

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).

DSC01823So I popped off his legs, took off the liners and let him crawl around. I didn’t think twice about it because there was no one around, not a soul at the park this morning. But then I heard the babbling and banter of a little and his mom.

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 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.”

Six Months Post Surgery

May 8th, 2015

DSC06267It has been 6 months since Cade’s bilateral Symes Amputation at Boston Children’s Hospital and he’s doing great. I wouldn’t choose to go back to those before surgery moments, in spite of how cute he was at that age, because the anxiety leading up to handing your baby over to surgeons is not fun. I WAY prefer to be on this side of the surgery, after the healing and appointments, but am thankful for all these 6 months has taught us.

Each morning, we put on his liners and prosthetics shortly after breakfast and he wears them until bath time after dinner, with the exception of taking off just the hard prostethics while he naps. Cade has tolerated the liners well, he’s never had skin irritation or a rash, thank goodness. NextStep Prosthetics has made minor adjustments to improve his balance along the way but he is still in that cute, initial pair and has grown into them nicely.DSC06345

DSC06266Although still not freely walking, Cade cruises the furniture, the kitchen cabinets, the walls. He’s on his feet all day long and getting stronger. Boy does that boy like to climb stairs…and then fly head first down them (much to his momma’s horror). Two weeks ago Cade pushed his wooden radio flyer push toy across the bedroom and we about screamed for joy. What that showed us was that he was able to balance himself and only push far enough forward until he could take another step. For us that was a big break through. As eager as I am for my little super hero to take off, I also realize he is only 14 months old and has far more obstacles to overcome than the “normal” walking toddler, with the “normal” walking range being 9-18 months. So my sweet kiddo, you can take all the time you need.

DSC05829With this new found balance and furniture cruising, Cade’s favorite activities involve getting into things. Trying to wrangle the baby gates so he can take on the stairs while momma is not looking. Trying to get into the cupboards so he can assist momma / trip her while she is trying to prepare meals. This also means we have a new found love for playgrounds and slides (which he prefers to go down head first). All boy? I sure think so. He’s added to his vocabulary “bubbles”, “poo poo” and “purple” and “ba” (sheep) to his animal sounds. He loves his “da da” and has all but forgotten how to say “ma ma”…unless he wants something really badly, then it sounds like “maaaa maaaa maaaa” in the whinest, most annoying voice ever.DSC06240

We are thankful for each step along Cade’s journey–for what it is teaching us about overcoming the obstacles we each have in our lives and how we view people on our daily encounter. We see Cade thriving and love every day. We are of course, always thankful for those people in our lives who have been our encouragement and sources of light through this FH journey.

“Praise the Lord; praise God our savior! For each day He carries us in His arms.” -Psalm 68:19

 

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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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Surgery Day

November 8th, 2014


DSC01048It’s been exhausting. This whole process. Learning to let go, say goodbye, embrace the new and look ahead. We see possibility, we scream it rather than choosing disability. We see our strong fighter, our wise warrior in his hospital crib smiling at the nurses and doctors who arrive to rip tape off his delicate skin. We see him trying to play, wanting to read with those big old dinosaur casts on. We’re thankful for America. Thankful we are lucky enough to call this place home.DSC00756Have jobs with such compassionate, truly thoughtful and dear coworkers…friends. We’re thankful for health insurance and the “best of the best” doctors in our backyard. We’re thankful for friends and family who sat with us through this ordeal. Who texted us, called us, were thinking of us. DSC00749Who took our minds off what was so clearly out of our hands and impossible to process. The arms of a momma want to push all harm away from their wee ones, seek to guard and shield, and yesterday these momma arms had to surrender, part with and wait empty for a time while Cade was in the OR. It was as if I was a caged beast, and had we not community and family, I would have been pacing, probably foaming at the mouth.
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This is all hard. Initial diagnosis, processing time, new baby, surgery. There’s no getting around that. Babies aren’t meant to lose part of themselves. Moms and dads aren’t suppose to make these decisions. Babies aren’t meant to be in hospitals, surrounded with beeps and tubes, white coats and medication. Many people told me yesterday how great I was doing, how strong I was and it was almost irritating. This was survival. DSC00796Choosing medical intervention so we could help Cade achieve his normal was so far from my heart’s desire. So far from anything I had ever hoped for for my future child. No, I had dreamed about cute clothes, nurseries, pushing a stroller through town. This is survival. And there’s no right way to do that but my husband assures me there are certainly wrong ways to do it.

Yesterday we arrived at 6 am. We checked in and waited, the ultimate description of Cade’s surgery day. We waited for the medical team, waited for surgery to be over, waited for the opportunity to see him in the PACU, waited for a room…waited. And all of it was hard. But there were so many blessings that came with that wait. Having my mom and dad wait with us which was never a guarantee and not taken for granted, having prayer warriors around the world thinking about Cade. Having our pastor present when Cade was taken away from me. DSC00791The opportunity to have Matt carry him into the OR and hold him while he drifted away for a bit. Having our friends wait with us, entertain us, ultimately distract us from allowing your mind to go there. Having the courage to wait even longer for the possibility of a private room and because we chose that path, having the same nurse who took care of Cade when he was 3 weeks old, a familiar face in the midst of it all. Getting sleep. Having a baby that didn’t get sick from all the pain meds and was ever so brave with all the pricks and pokes. It’s remarkable. It’s God.DSC00804

How do you process all of this? I would have never chosen it. NEVER chosen this hard road but I would have missed so much joy. My dear friend Kara spoke of this yesterday and I so related. How we often chose the easy road. As Americans. As humans we make decisions daily that reflect our desire for the easy rather than the transforming. DSC00836  DSC00856

We get mad when our journey is hard. Like we have control. And this is teaching me we have so little. You do not get to say whether your child will be well, born with ten fingers and ten toes, so they say. You do not get to say that you will get that job you want or the house. You do not get to pick your story because so much of our story is just a reaction to all that is happening to us. And we question. We can chose to shake our fist at the heavens screaming, “you can’t be real because I call this unfair.” We can chose to say, “I accept this and choose to see blessings through the haze.” We chose our response to the life that is happening to us.DSC00877

Pastor Jay read us portions of Psalm 73 as we waited for Cade to be taken away.

“Does God realize what is going on?” they ask. “Is the Most High aware of what is happening? Look at these arrogant people–enjoying a life of ease while their riches multiply. Was it for nothing that I kept myself pure and kept myself from doing wrong? All I get is trouble all day long; every morning brings me pain. If I had really spoken this way I would have been a traitor to your people. So I tried to understand why the wicked prosper. But what a difficult task it is…Then I realized how bitter I had become, how pained I had been by all I had seen. I was so foolish and arrogant–I must have seemed like a senseless animal to you YET I still belong to you; you are holding my right hand. You will keep on guiding me with your counsel, leading me to a glorious destiny. Whom have I in heaven but you? I desire you more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever.

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DSC00909Be careful how you choose to respond to the life you find your self living. Be purposeful about counting your blessings. Realizing that you have so much. Choosing to keep moving, keep breathing. Focus your eyes on heaven because my friends, this story that is happening to us is temporal. It will end. Life is short. DSC00959See the DSC00918possibility when others see disability. And do it all in love because the lovely is all around. When your baby has big, thick casts on, see the big happy dinosaurs that grace them. When winter brings snow and we grumble, look closely, purposely choosing to see the intricate uniqueness of each and every snowflake. Turn your gaze heavenward. Do not be bitter by all you see, the politics, the pain. Gaze heavenward when it’s hard. I speak this to my soul as we wait for instructions from the hospital that took Cade’s little foot away. From the place that gave him the hope of a future normal. We choose to see the possibility not the disability and we choose to see God in it all.DSC00972

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Cade’s First Surgery

April 28th, 2014

DSC00684We knew very early on that baby Cade had a probable diagnosis of Fibular Hemimelia and we were already surrounded by an amazing medical team before he even graced us with his presence. Matt and I had seen many ultrasounds of him and tried hard to visualize his little lower legs. The only thing that took us by surprise upon meeting him in person was a little dangley appendage, for lack of a better description, on his right lower leg/nub. He very clearly had a heel and it looked like he had tried really hard to have a toe. Bless his little heart.
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However, that little appendage was hanging by a thin piece of skin so it flopped around. I was immediately concerned with the very real event that this active little baby boy of mine was going to get it stuck on something. The last thing this momma could handle was finding a toe somewhere on the floor. Baby Cade made his first trip to Children’s Hospital Boston three days after being born. Dr. Kasser had the opportunity to examine him in person and thought it’d be best to take the wee little toe off in the OR just as a precaution. That was scheduled for April 2, he was 3.5 weeks old.surgery2

Matt and I had shared with our Bible study that we were hoping this “dry run” of sorts would put us more at ease for Cade’s big surgery that will occur when he is 6-9 months old. I had prayed specifically for all the right nurses and doctors and ultimate peace knowing we were electing to have this little operation for him (knowing it would have to come off eventually). We got to the hospital early, 7 am to check in for pre-op and to then have a series of tests done prior to the operation that would allow Dr. Kasser and his team to make the official diagnosis of Fibular Hemimelia. Our little trooper was patient with the ultrasound and xray technicians as they got the scans they needed. The doctors and nurses were wonderful as we waited for his little surgery. When the OR nurses came to get him from us in the pre-op area I was unprepared for the emotional trauma that goes hand in hand with handing your sweet, little babe over to strangers and watching them walk down the hall with him. It was at that point that the tears came quickly.

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It was a quick procedure but it sure felt long. The ultrasound of Cade’s hips had revealed very minor hip dysplasia. I wanted to scream at the top of my lungs, “enough already!” This poor little guy. It took a bit longer for them to come get us and take us to his recovery room because they already had a prosthetist crafting a brace to keep his little legs in abduction, to encourage proper hip alignment as his bones develop. It was such a minor case, Dr. Kasser said they typically wouldn’t even put him in a brace, however, because of his lower limb abnormality, having strong, perfect hips is a must. Better to catch it early and fix the problem, which means the poor little baby will have to wear this diaper-like brace for 4-8 weeks. It took a day but this momma is coming around and trying hard to not be so sad. The count down begins!

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Fibular Hemimelia

March 17th, 2014

 fibular_hemimelia_1Prior to our little boy being diagnosed with a lower limb abnormality, we knew of not a soul who had gone through a similar experience. Our experience with little kids with prosthetics was the occasional “make you cry” youtube video or inspirational story on Dateline. Once we found out we were expecting a little boy with this abnormality and we had grieved and healed enough from the grief journey, we began scouring the internet (where else do people turn these days?) for information about a possible diagnosis.

We found Fibular Hemimelia pretty early on in our search. We hope our findings, research and experience will benefit someone else as they struggle through this diagnosis. Please reach out to us if you have any questions about our experience.

What is Fibular Hemimelia?

Officially called, Longitudinal Fibular Deficiency, Fibular Hemimelia is essentially the total or partial absence of the fibula bone. There are two long bones in the lower leg, the thicker one is called the tibia and the thinner one is the fibula. With Fibular Hemimelia the tibia is shorter than normal and the fibula is missing or underdeveloped. A leg affected by Fibular Hemimelia will look shorter than an unaffected leg. The tibia may be bent and the foot may also be smaller than normal, bent outwards at the ankle and may have fewer than five toes. The knee is often also misshapen and may move abnormally.

Wheeless’ Textbook of Orthopaedics describes it as the most frequent lower limb abnormality, most often unilateral, commonly with “complete terminal deficiency” missing all toes or affecting the lateral rays of the foot, as seen with our little guys feet. He has both no toes on the right except for a bit of tissue coming off the ‘nub’ and 3 toes (including a big toe) on his left foot. This diagnosis affects males twice as often as females.

http://www.wheelessonline.com/ortho/fibular_hemimelia_longitudinal_fibular_deficiency

Fibular hemimelia is usually not an inheritable condition. The vast majority of children born with this condition have no family history of other birth defects.

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 What Causes it?

Beats me. I asked Dr. Kasser why it happened and he looked at me and said, “why is the sky blue?” It seems like it just happens…a vascular accident somewhere between 4 and 7 weeks pregnant when those sweet lower limb buds are developing. I am a clinical dietitian, fit and healthy. I buy organic vegetables, avoid GMOs, get enough sleep and have only ever been happily married to the sweetest man. I took my prenatal vitamins prior to getting pregnant although fully convinced you should be able to get those necessary vitamins/minerals from the good food you eat. I am young and was very ready to be a momma. Fibular Hemimelia affects 1 out of 40,000 live births…the total number of births in the US in 2012 was 3,952,841 which means there are about 98 babies born with this diagnosis yearly.

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I have found comfort reading other people’s stories with Fibular Hemimelia. A great blog is: http://lisaelaine4.blogspot.com/p/fibular-hemimelia.html  This blog has a wonderful page of resources we have found very helpful in our journey with our little guy’s diagnosis.

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