Day: January 14, 2020

Well a new chapter of our life has begun! We got the keys to our new home yesterday. It’s a pretty surreal feeling. I don’t think I’ve stopped to just soak it in yet because there so much to do, so much change, so much to coordinate with help and handymen and painting but as jake and I and the boys walked into the new house today I’m just in awe of God’s goodness.

Here’s a little bit of back story just to be open and honest with all you who want to follow along our story. Jake and I moved to Nashville 2 years ago. We felt God calling us here and we also were just ready for something new. The first year was crazy hard. Our family has lots of different needs so moving across the country from all our friends and family made it extremely challenging but let me tell ya, God provided everything we ever needed along the way My parents knew they’d be moving to Tennessee eventually but was never set on an exact date. They still felt called to be in Arizona.

Fast forward to March of this year and my amazing brother Austin who lived at home in Phoenix with my parents went to be with Jesus. If you don’t know that story go read my blog The Saturday Shock. A shock for everyone. Something we are all still navigating through. Shortly after his passing my parents felt the release to move to Tennessee. Here’s what I AM saying, God knows everything. More than us. So all we can do is trust him. His timing. His plans.

My parents bought a beautiful house here in Spring Hill Tennessee and we will be living together. They have the cutest loft/living space upstairs in our new house. I’m excited for this new adventure for all of us. For mine and Jakes family, for my parents, and for us as a family as a whole. It’s a new season so pray for us as we navigate how this is all going to work lol

So excited for this new season. I’ve never been in a house we own. One that we can do whatever we want to. So believe me, my creative mind is having a blast with this! I’ll keep you all posted!

Meg

What do I have to share?? A question I woke up asking myself.

A few months ago a mother contacted me and asked if I would be open to talking with her 14 year old daughter about life. Sharing some of my story with her to encourage her and mentor her. What do I have to share??? At first I didn’t think I had much to give but, I know God has used my life story to share his goodness before, so I said yes. 

Today I had the privilege of opening my home to a few young girls, 14 and younger. All four of us girls were very different. Different personalities, different families, different dreams and goals but we did have one thing in common. All 4 of us girls have spinal muscular atrophy. A disease that many people say we “suffer” from but my hearts desire was to share with these girls that I don’t suffer but I thrive. As a woman. Not as a disabled person. 

I don’t usually identify myself as “handicap” or “disabled” but yes, I’m not ignorant to the fact that I am those things however, I’ve never let them define who I am. As I sat and listened to these girls, they talked about the normal things; shopping, boys, over protective parents, but we also talked about things most 14 year olds don’t talk about like the new treatment for SMA, toileting techniques and even fears about the future with this disease we have. 

I realized I did have something to share. As we sat for a few hours without their parents and then later with their moms and siblings I realized what it was. 

ANYTHING is possible, it may just need to be done a little different for us. 
be YOU, even if it doesn’t please everyone 
don’t be SCARED of the future, just take one day at a time 
&
ALWAYS be willing to share your life story, it could change someone else’s perspective on life. 

Bronxton Alexander, A Mighty Man of God, entered this world on November 22nd 2013. He was more than anticipated by not only Jake and I but really our whole family and church family. Before Bronx was even born we all knew he was a miracle.

When I was a little girl (like 5 or 6) I used to pretend that I was pregnant. I remember telling people to put there hand on my belly to feel it “kick”. It was just part of being a girl and desiring to be a mommy some day. As I got older I hadn’t put much real thought into all the logistics of me having a baby, but as Jake and I were approaching marriage the question became real, Can I have a baby? I never knew anyone with SMA II that carried their own child. I remember the day Jake and I met with an OB Specialist, she saw our desires but said she would have to do her research. She had us come back into the office a few weeks later and told us she found a few cases and didn’t think it would be dangerous for me to get pregnant. Sure, there were some things we had to take into consideration but I had the green light to get pregnant and for me that was an answer to some of my biggest dreams.

Approaching our 2nd wedding anniversary, I started to feel pretty lethargic and EXTREMELY hungry (I now know that is a huge tell that I’ve got a mini growing in me) I took the test and before I could even finish peeing on it that test was screaming PREGNANT! Lol and Jake said, I knew it! Haha so I kept it from my family (which if you know my family that was extremely hard to do) we announced it by surprise at a big gathering at my parents and let’s just say everyone was beyond shock and excited.

My pregnancy with Bronx was amazing! Didn’t throw up once, never any signs of preterm labor (which is the biggest concern we had) and we planned to take Mr. Bronx out of my tummy at 35 and 5 weeks. As my tummy grew bigger and bigger and I could feel and see him grow and kick and flip in there I was so amazed at the goodness of God. I can really say it’s the most incredible thing I’ve ever experienced.

As we were making our lists of names we liked we came across Bronx (yes, like The Bronx) and Jake and I loved it. We loved how strong it sounded! Since I found out I was pregnant I always spoke Strength and Joy over my growing nugget. (I later see why God had me speak that over him) HOWEVER, my mother, who is from back east, didn’t like the sound of just Bronx for her first grandson haha. She would say “Do you know any CEO’s named Bronx?” (I don’t know any CEO’s but I understood her point lol) so we made up the name Bronxton.

The day came fast and it was time to bring Bronx into this world. I remember that morning like it was yesterday. I woke up at 4 am, curled my hair with my sister and best friend Bree. Then Jake and my mom and I headed to the hospital. We checked in, got me all hooked up and ready for my C-section. I couldn’t wait for them to get that baby out and neither could the 25 people waiting in the waiting room. I had an amazing doula who was there to capture all the pictures of my baby entering the world, of daddy getting to do skin-to-skin with him first, then of me meeting and kissing and holding my miracle for the first time. At 7:44 am I went under and woke up to a very different picture than I had expected. I was very drugged up but I remember waking and my friends Ashleigh and Alissa showing me pictures of my baby and some cute videos of him grunting (which we later found out was because he couldn’t breathe) They were being sweet and positive but I was so confused why my baby wasn’t in the room with me. Then they asked if I wanted to go see my him. That right there was a strange thing to hear. They wheeled me into the NICU. A place I ended up spending more time in than I ever wanted to. They wheeled me in on my bed and I saw a tiny 5lb 2oz baby lying on his tummy hooked up to machines that seemed bigger than a house. The nurses lifted him up so carefully so I could kiss him. But that was it. I went back to my room and waited for the doctor to come talk with us. Jake seemed positive and happy so I was just trying to understand what was going on. They then began to explain that Bronx’s lungs simply weren’t ready for outside of the womb. They tried their normal protocol with babies who have issues with lungs but it wasn’t working on Bronx. The next 48 hours were some of the hardest times we had ever experienced. Bronx ended up tearing 3 holes in his lungs because they were like paper. He had to have 3 surgeries to release the air that was filling his chest cavity. Our little 5 pound baby was struggling and there was nothing we could do.

Jake would go back to the NICU to see Bronx, talk with the doctors and keep tabs on everything so he could report back to me. I had to give myself a little more time before I could get back in my chair and go see him. But he was nowhere near stable enough to leave the NICU. I remember a very pivotal point in this whole thing, one of the doctors (not my favorite one might I add) came in and so simply said (to these first time parents) “I’m just not sure what’s going to happen to your baby” …. Like a knife in my stomach. What the heck does that mean??

At this point our friends Alissa and Eli had come back to the hospital just to be of support for us. This one time Jake came back from seeing Bronx and he lost it. Broke down in tears and that was it for me. I couldn’t keep it in anymore and I was so sad to know there was nothing I could do to help him. My world felt like it was literally falling apart, but one thing I remember SO clearly is what Alissa and Eli told us ” This is going to feel like it’s  lasting forever, but he WILL be ok and in a year you’ll look back and be amazed at the goodness of God and that you THREE got through it.” That was the only bit of hope we had for Bronx at the time.

I remember one of the worst feelings I’ve ever felt was leaving the hospital without my baby. The diaper bag packed, car seat installed but no baby. No baby to wear the tiny thanksgiving outfit I bought. That’s not the way we planned it. That’s not the way it was supposed to be.

The next month Jake and I spent every morning driving 45 minutes, often in silence with just worship music on, to get to the hospital, then driving home every night still empty handed. Some days we would get there and the doctors would tell us he was making progress and some days seemed to be stagnant. But all his nurses and doctors would tell us “you have an amazingly strong boy”. That’s right! We prayed strength and joy over him since day one. They actually had to sedate him even more because he would try and breathe over the machines and they needed him to relax and heal. Bronx had to be sedated for more than 2 weeks and to watch a 2 week old then have withdrawals from these strong medications was so terrible to watch. His little 2 week old body would shake and sneeze and have different side effects but of course our little man was a champ.

4 weeks later and Bronx was finally ready to come home. It was like Christmas!! I remember the excitement inside that this was finally the day. See I didn’t get to hold my baby for the first time until he was 2 weeks old, but the amazing part of the whole process is that the staff of the NICU taught us everything we needed to know. They taught us how to change his diapers, bathe him, feed him and they answered any other questions we would have. They even had us practice putting him in his car seat. It was like hands on training before we had to go home and do it ourself. Bronx came home and it was like a breath of fresh air

As an infant they don’t do much so we couldn’t tell if he was developing at the normal rate or not. But as 3 months rolled around we noticed some things just weren’t coming natural for him. Holding his head, swallowing properly and just many “normal” milestone weren’t being met at the typical time. With all of Bronx’s complications from birth it did cause some developmental setbacks that again we were not prepared for. Bronx did not crawl until he was almost two, had and still has physical, occupational and speech and feeding therapy throughout the week. Bronx still doesn’t sit or walk on his own but let me tell you some of his wins. He is Brilliant! He just started preschool and according to his teachers he has won everybody’s hearts. This boy sings, prays, dances and laughs everyday. He is sensitive and he is silly. He has to work so hard for everything but that just makes me even more proud. The doctors, his therapists and Jake and I all believe he will walk and function just like any other kid but has to work a little extra harder for those things.

This obviously will not be the last post about our Bronx because come on, he’s so darn adorable, but I just wanted to share again that my life and even my children’s lives are different but perfectly placed in the hand of God. Bronx you are my miracle. I’m proud of you and I love you. The joy that you bring this world is life changing and you will always be a light for Jesus

Love you Bubba

Driving in the car and he said “Wow, you look beautiful today.” How did I get so lucky? Some of us hear this a lot and some of us don’t. 

Jake I wrote you something below ????

Jake-I wrote a blog a month ago about the story of “Jegan” (Jake+Megan) but I never posted it. I had such a hard time capturing US in a short blog. I honestly think I could write a book about us, how we met, fell in love, got married, had kids, the good times and the hard times and how we continue to grow more and more in love every day. So, I decided to write you a letter, or even letters, just to express a bit of my heart for you. Again, it’s so hard to put it into words, but I love you. I love how you love me, how you love the boys, how you love our friends and even strangers. I know you feel like God sent me to you, but you have taught me more about life than you realize.

You’re a wonderful creation 

You’re Generous:
I know you don’t want the world to know, but I’ve seen you give the jacket off your back for a homeless man. I’ve seen you secretly give someone all your money to help them pay rent. I’ve seen you give your guitars away without people knowing who or why. You’ve taught me to never hold on to things, to give if you have it and to trust that God will “feed the birds” 🙂 thank you for teaching me generosity.

Proverbs 22:9 A generous man will himself be blessed, for he shares his food with the poor.

You’re Humble:
As we like to say “the big dog doesn’t have to bark.”

Babe you’re hot! You’re big and strong and tattooed and I love every bit of you, but your heart is the sweetest part. You always stand up for the under dog. You make the shy feel confident and the weak feel strong. You NEVER toot your own horn, even when you have every right to. You are CRAZY gifted and you wouldn’t tell a soul and all you want to do is play music for God. Wow, that still amazes me. I know life can be hard babe, but your heart is pleasing to the Lord. Thank you for teaching me humility

Psalms 25:9 He leads the humble in what is right and teaches the humble His ways.

You’re Selfless: Jake, the way you love me and lay your life down to care for me is really an amazing thing. I know you don’t think twice about it because you love me, but it really is special. I am the luckiest girl in the world to have found a man like you. You care for me, do things most guys don’t do for their wives, you go above and beyond for me and you do it with joy. Thank you for showing me selflessness.

Eph. 5:25 Husbands, love your wives, just as Christ loved the church and gave up His life for her.

Babe these are just a few of your amazing qualities that I LOVE. I love that you dream about our future with me, I love that you cook sushi for me, I love that you believe in me and my gifts, I love your heart for people, I love the way you teach the boys about Jesus, I love our deep conversations in the shower, I love that you can make anyone laugh. I just love the poop out of you 🙂 I’m so honored you love me back. You’re an amazing man and I adore you. Life is so fun with you. I’ll be writing love notes to you forever

-Me

Hanging out in the café Sunday morning before church, a lady about 10 years older than me walked up to me and said she just dropped her baby off in the nursery and was admiring my little ones. She commented on how much they had grown and how different they looked. We began talking about the miracle of our babies and although this woman was just an acquaintance, she said some things to me that almost brought me to tears. I know this woman very little, but what I do know about her is that she suffers from a sickness where she is often very sick and is even hospitalized frequently. The doctors told her eight years ago that she could try having kids, but it most likely would never happen. She said she so desperately wanted a baby and that when she saw me get pregnant with my first son Bronx, she was so encouraged for her own success. She thought I was extremely brave, but also just hopeful that maybe it could happen for her. Sure enough, a miracle ended up happening to her too. 

As we stood in the lobby talking and rejoicing about our beautiful miracle babies, what she said next really struck me. She said that she gets so much crap from other people for having a baby. They don’t understand why she would choose to have a baby, she needs so much help from her parents, her in-law and especially her husband because of how sick she is. Mind you, she is a beautiful woman who walks around, fully functional, you wouldn’t even know she was sick. And here I am, I had two kids, in a wheelchair and Jake and I still want more. Most people know my limitations, at least the people in my circle. They know that I can’t cook my own dinners, can’t shower myself or even take myself to the bathroom. We began to have a discussion about how awful it is to hear those words. Why would anyone else think these things. She said “I finally said to someone ‘why do other people get the joys of having a kid, but I don’t?'” This really stirred something in me because it’s something I struggle with. In an ideal world I can do everything I wanted to do around my home, for my husband, for my kids. I would make them dinner, give them baths, hold them when they cry and rock them when they’re sick. But the reality is I can’t. I have days where I feel extremely discouraged, I wonder why God would have given me these babies if I can’t take care of them. People want to know how it’s done. how the boys are properly taken care of. how we remain happy and how we function. Well it’s through the help of everyone around me, my parents, my in-laws, my friends, my husband, my two incredible nanny/caregivers. You see, I couldn’t do it without them and most people realize that. And as grateful and thankful as I am for all these people it’s also a very hard thing to come to terms with. These people become my hands on a daily basis. They do everything I wish I could do for my own babies, feed them, wipe their poopy butts, everything. I’ve had people look at me weird and even had people say they think I take advantage of the people around me, but let’s face it, if these people didn’t want to be in my life then they wouldn’t offer to help. And the feisty women in me says I don’t want to use a helping hand that doesn’t really want to help anyways, but I know that these people I have, love these two babies of mine so incredibly much. They see it as a honor to help me raise my boys. 

As a mom and a very strong person it’s a very hard feeling to feel like you’re not capable of doing anything, but God reminds me I’m capable of loving my babies and praying for them and showing them what life is about. It’s also hard to feel like you rely on so many other people all the time. Somtimes it sucks asking for help but my kids need it, so that’s what I have to do. God continually reminds me that these are my babies, that I know what’s right for them, but I just have to use other people to get it done and that’s OK. My babies will never feel unloved or unwanted. My “Mom Life” is different than others. My kids are strapped to my wheelchair, kissed and held by everyone in town and it’s a wonderful thing. I’m in a crazy season of life, having two kids two and under, but God is with me in every season. I’ve decided my blog will not only show the fun parts of my life, but also the struggles and just the daily things that it takes to raise the boys being in a wheelchair. I hope it speaks to you and encourages you because I deserve to have kids and so does any other woman out there who has that desire in their heart. 

Let me first start with a little history. Before the babies, before the husband I was Megan Kellie Cuaderno, a little girl who was born in Monterey California. I was born into an awesome family that took life as it came, did it with fun and God in the center. Life evolves as we all get older, but I can tell you I had an amazing childhood. I am 1 of 4 siblings. I truly believe many factors in life help shape the uniqueness of each person. You want to know me? Know my family. I have an awesome older brother Ryan, who can be quiet if you don’t know him, who’s smart and amazing at EVERYTHING he does. He has grown into an amazing man of God who, though I don’t get to too often, genuinely love spending time with. As a kid I remember him being your typical bigger brother. He loved and cared for me, but I think there were some things in life that were different for us because I couldn’t play catch with him, or jump in the lake with him but I still knew he loved me. I love watching home videos ((my dad recorded us a lot)) and seeing him play so sweetly with me. I know Ry has had to swallow the reality about our life, that he is the only one out of the 4 of us who isn’t affected by our disease, but I PRAY that he never feels guilty, never questions why only him and never wishes he could change his life, but instead just keeps being the awesomely cool brother he is. There’s my Austin Boy. Ok he’s 22 but I remember Austin as a baby like it was yesterday. He was my baby. I brought him into my preschools Show and Tell because he was what I wanted to share with my little world. Austin too has SMA II. He is probably the most brilliant man I know. He is almost done with college and will be a doctor someday I’m sure. Even though he’s my little brother, we experience a lot of life changes together, getting new wheelchairs, meeting new Drs, back surgeries, figuring out tricks to pick things up with kitchen utensils haha. Austin is quiet and extremely witty. I’m the more outgoing and vocal one, but what people don’t often notice is Austin is more independent than I am. He helps me more than others realize. Aust you’re still my pride and joy and I’m proud of you. And of course, my sister Kaitlyn. Oh, if you know Kaitlyn you know she is beautiful, fun, feisty, loud and loves my babies more than anything but let me share Kaitlyn as a baby. She came out on a mission. She was ((and still is)) a determined little girl. My mom always said if she was the first born, she would be an only child. Kaitlyn and I shared a room from when she was born until I was in high school. I remember when she was a little one she figured out how to climb out of her crib, pick out her clothes, open the door and walk out. I can assure you she didn’t learn that from me haha ((as I lay in my bed watching the whole thing trying to convince her to go back to bed)) Kaitlyn has never been diagnosed with SMA but she has some weakness that prevents her from some things. She isn’t in a wheelchair and I pray and believe she never will be. Growing up we didn’t totally get along, but as we have become adults she’s one of my best friends. We are very different but very similar. My parents, Ken and Kathy, are beautiful, crazy people. Imagine being them, raising a young family. 2 of out your 4 children never walked. Your youngest showing signs. How heartbreaking. But I can tell you they have never shown the heartbreak. You know what they show daily? That life, though it can be hectic, is fun and beautiful and God is still good. Growing up, my parents did everything with us. I mean EVERYTHING. Even things I begged my mom not to make me do like snow ski or ride our jet ski, but always thanked her later because it was a blast. People wonder why they don’t see my chair? Why I’m so “normal”? Why my life is great? It’s because of their attitudes and love of life. The Cuaderno household was full of life, obstacles, loud people, and lots of stories. These people have helped shape who I am today. 

I was reflecting on my life today as the house was silent ((which can be rare around here)) and I was telling God I was ready for something new. Not like the new house we just moved into or the “new” baby that was asleep in his crib but something for me. I had no idea what but as I sat in the kitchen, Alyssa ((I’ll share more about who she is later because she’s too amazing for this short blog)) walked out to the kitchen and very randomly said “Megan, you should start a blog!” I don’t like writing… I don’t know what to say… I don’t think anyone will read it but hey it’s something for me so… Here goes my life from my “shoes”

ok yes, if you see my closet you’ll see I do wear shoes lol but on the most important occasions (( prom, my wedding day, when I had my kids)) I didn’t have shoes on. Why? Because I didn’t need to. For those who will read this and don’t know me personally I’ll share very briefly. I’m in a wheelchair. That’s it. Haha ok I’ll share more. I have Spinal Muscular Atrophy type II I’m a fully dependent, independent woman who loves life. Feel free to ask me questions or google it 🙂 but I must say life from my view can be just like your everyday moms life … except completely different. I’m hoping to be able to share my pretty rad life with… well,the whole world I guess.

you probably won’t see many pictures of me but I’m hoping you’ll get to see the world through my eyes, my beautiful babies, my handsome husband, my amazing friends, my faithful God, the daily life of weak hands but strong wills and who knows what else will make the list

Meg