A Year Ago

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

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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Six Months Post Surgery

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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Refreshing Honesty

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

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

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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

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…

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

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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Surgery Day


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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