Caysen Year Four: A Letter

What a year or two it has been! Looking back on just the change from last year’s birthday to this year, we are so so incredibly blessed. Last year at this time you had been in the hospital for almost two months. You still had a swollen belly, were puffy yet scrawny and malnourished looking, and  you couldn’t make it through the day without albumin – because the dreaded Protein Losing Enteropathy had crept in and was taking its toll. 

On Mother’s Day in 2016 you were sick, and we ended up going to the hospital. We didn’t realize that you wouldn’t officially discharge until November, and with a new four chambered heart. 

To think all you have been through in your four years makes me so incredibly proud of you. Just when I thought you would never eat by mouth, you decided you would. When I wasn’t sure about your motor skills, you proved me wrong. It’s a reoccurring theme, when I’m unsure of your resilience; you prove to me that you have it!

This past year brought chest tube after chest tube, poke after poke, 10 different fractures in your little body, bags and bags of TPN or IV Nutrition, a medical flight, 2 different children’s hospitals (with staff at both that we dearly love), and most importantly that beautiful new 4 chambered heart. 

Last year at this time the future was so uncertain for you. Could you make it home with your native heart? How much longer did you have? What were our options? I find that this year, some of those questions are answered while some never will be. You could not make it at home with your native heart – but it served you well. Our hand was forced when we ran out of interventions and had to list you for transplant. As for the question as to how much longer you have? We don’t know. But if you think about it, no one knows. While you might have even less than the average person – we are still so grateful for each day and plan to live each to the fullest. We couldn’t be more thankful for your organ donor!

Here is what you are up to now:

You are walking better after over 6 months of consistent PT. In fact, you spent some time this past weekend “racing” your brother on his bike. Your run is the cutest thing ever, you grin and laugh the entire time. I couldn’t help but notice your lack of blue lips, or the fact that you wanted to keep racing him. You couldn’t have done that before! You still show your weakness when it comes to climbing steps, but we are getting there!

You are wearing a size 4T shirt and usually 3T to 4T shorts. Your shoes are a size 6. You weigh in at about 33lbs. You love eating! Some of your favorites include chili, blackberries, chili cheese fritos, orange bell peppers, hot dogs, taco meat. You still have your G Tube that we put meds in, we push water to keep those kidneys happy, and we do some nighttime feeds.

Your sleep is still a mess. You don’t like to be alone, that’s for sure! You will often wake us up screaming for mom or dad, or we will wake up to you just climbing into our bed with your Pikachu or your giraffie and your blankie. Some nights you sleep like a pro, others you won’t. You still nap during the day,usually an hour is good for you to go until about 10 or 11pm that night. You are definitely an early riser, often up by 7 unless you made it to our bed – where you sleep like a log.

Your favorite show is Paw Patrol, but you still enjoy your Bubble Guppies as well. You love watching the most random YouTube videos as well. You have an imagination like I haven’t seen before – you can pretend play like no other. 

You always want to be like your brother or your Daddy. You had to go to the dentist recently where you insisted that you had a loose tooth, like your brother. You are always thinking of him – wanting to get him a toy or a piece of candy anytime that you do. You also enjoy being like your Daddy. You will look for your tools to “fix things” just like Dad. You even use your tools to “fix” me, cutting with your saw and repairing and then giving shots telling me “this won’t hurt”, and listening to my heart – “sounds good!” I think you’ve heard those things a time or two before.

Your dimple little smile seems to get all kinds of attention, and your Mohawk suits your personality. You started school this past year and you LOVED it, getting to take you r ‘packpack’ like brother and learning in the classroom setting. The independence suited you, I’m interested to see how this next year of a full day Pre K goes for you! 

You are down to handfuls of meds, most important being the anti rejection meds that you will take every 12 hours, for the rest of your life. If you don’t take those about 12 hours apart your immune system becomes less suppressed and that can be dangerous for your foreign heart. We are still working on your bone density as well, and will continue with infusions.

Overall, we are so incredibly blessed to be where we are today. We realize living in a hospital was no way to live, and it especially showed when you quit talking to us for a couple of months while inpatient. This second chance at life is nothing short of a blessing, and we are thankful for your donor, day in and day out. It was by far the most selfless and most precious gift you will ever receive. We pray for the donor family nightly as we know their loss was tremendous, and yet despite their pain they did something so courageous.

We know that transplant starts down the ticking ‘clock’ if you will, but that doesn’t stop us from taking advantage of every moment we’ve got. From pig piling on each other in the living room, playing hide and go seek, jumping through the sprinkler or just watching a movie together – we have learned the importance of time well spent, and we will continue to do so. We will continue to love deeply and always, all while holding the donor family close. 

Because every day when we look at you we remember, you are nothing short of a walking miracle. 

God is good!

Year Five: A Letter

Dear Camden,

STOP the madness. I cannot believe that my little baby, the one that made me a mom, is now officially 5. FIVE! That's...ALL the fingers on one hand!

Camden has been up to a lot this past year. He started school, going to a Pre-K class that he LOVED. He was so disappointed to go to summer school that "wasn't the same". He is still a cuddler/hugger - giving good hugs at the most random times. He loves to be outside, "when the weather is so nice". He is a great helper, he has chores that he completes every week, he likes to help his dad mow the lawn, and he follows directions fairly well for a 5 year old. He likes to help feed the dog, change the trash, do any of the things I'm doing - especially if it comes to cooking. He can crack and egg like a pro!

He loves to swim, and this year he finally made the transition to swimming without floaties. He does great, and is a tan little fish. He gets to swim nearly every weekend, and some weeknights too over at grandma and grandpa's house. He still has sandy blonde hair, ridicuously long eye lashes, bright blue eyes and a tan that many girls would be jealous of. He is about 42 inches tall, and he weighs about 38 lbs, which is small compared to other kindergarteners in his class that are almost 6, and he's barely 5!

Speaking of growth - as he has continued to get older his toes are still turned in, causing his little hips to get out of alignment. God has blessed us with an amazing man of God and chiropractor who is helping us line his little body up right. We are adding little foot orthotics to his shoes to help his little feet turn out, and he is doing really well with them. We are believing in this miracle - that as he grows God will straighten him up!

He loves sleepovers at Grandma and Grandpa's, after church night on the weekends. He loves the sleepovers even more when his two cousins join him. He calls his cousin Kaitlyn who is 4 days older than him "my best girl". On some days, he will even ask if his brother can spend the night out with him because, "I really want him there".

He still prefers a morning sippy cup of milk in the morning, and a sippy of chocolate milk after school. He could live off of hot dogs and chili, I swear he might never get tired of that. He is a slow eater, but I hear that will change this year in Kindergarten, when they have about 15 minutes to eat their lunch. That will definitely be and adjustment, as he takes more time than my geriatric patients take to finish a meal. ;)

He sleeps well all night, and can still nap without issue. It's notable that during the school year he gets extra cranky by Friday's - because of staying up late and getting up when Mommy and Daddy leave for work, and there's just short "rest time" or "brain break" at school. On weekend though, he can still nap for an hour or two, especially on days when he has swam hard in the morning or been busy with the family.

His little relationship with the Lord is a precious one to see. He was helping his Dad mow the lawn not too long ago, and Dad asked him to push the mower that was turned off, to the front of the house. He started to push, quickly had trouble and stopped. He said outloud, "Hang on a second, I need to pray". He then bowed his head, said a silent prayer, and then looked up with a face of determination. Next thing I know, he's digging his toes into the grass as he's pushed forward with all of his little body weight to make that mower move, and by golly, he did it successfully, all while grining with accomplishment. It was one of the sweetest things to see! It wasn't that long ago that he was sick at school, and his teachers called to tell me they had changed his shirt that he got sick on, but were going to see how he did. I called and checked on him but he made it the whole day. When I picked him up he simply said "my tummy was hurting, but I prayed to God to help me feel better and then he made my tummy not hurt!". Faith like a child, so honest and pure.

Speaking of praying, we are working on praying about our whining and fit throwing. We are working on reminding him to stop and pray and ask for Jesus to help him calm down and ask respectfully for his wants or needs to be met - all without throwing a fit. He still has his good days and bad days at home, but overall, he's a great kid and is learning daily. He even told me the other day that he knew he could pray about his legs growing to be even lengths and that "God was going to fix it". Amen, little man; you definitely got this!

He is working on memorizing his first Bible verse, and pretty much has it down pat. Proverbs 12:22 is the verse. It was given to him at Gymnastics class and we talk about it as often as possible, and we repeat it in the car so he has it down pat.

Gymnastics is another new thing for him. He has so much energy, yet he could sit inside and watch his favorite TV show "Paw Patrol" for the entire night if we let him. So, we enrolled him in a gymnastics class for now. I think it's been good at teaching him to listen and follow directs, and in a large group setting. This will hopefully be something he will enjoy doing, and maybe he will want to try other sports and activities as we go on. He definitely loves swimming and has been asking about taking more swimming classes. We will see what develops over the next year for sure!

He's a smart little guy, always able to tell me different facts about things, and he is constantly learning. He still has some difficulty with speech, 'chip' and 'ship' tend to sound the same when he pronounces them, as do 'shoes' and chews'. Those darn "ch" sounds! Another thing is "think". It always comes out as "fink". I love it. And he told us that his grandparents recently took a vacation to "Alasaka" which - I didn't even WANT to correct him.

And oh, this little boy as a big brother. It is just heart melting. There are times when gets frustrated and pushes his brother, or takes a toy away from him, but you can tell he immediately knows it's wrong. As soon as Caysen starts to cry, he will be hugging him, apologizing to him and trying to get him to be quiet - and hurry! - before Mom and Dad hear! ;)

But in all seriousness, he is the BEST big brother. He is incredibly patient, he likes to teach him how to do things and get Caysen to follow his lead. He will pat him ever so gently on the head and talk to him, while Caysen "mm-hmm's" and nods in agreement with whatever he is talking about. He understands what it means to take turns, who goes first, who gets to watch a show and he is sure to make sure Caysen gets what he wants. Often times he will speak up for his brother, as Caysen will point to something and only Camden will see it, so Camden will speak up for him. He knows exactly what Caysen wants and is one of the best at reading Caysen's speech and motions! He is SO good at taking care of his brother! He will give him rides on his toys around the house, makes sure he has his blankie, and will always share a bite of whatever he is eating. Their relationship is really a sweet one to see. I pray that Camden will always be a great protector for his little brother.

Camden, I hope you know how proud we are of you as parents. You are smart, kind, honest and inquisitive. You have a tender heart, a beautiful faith, and a loving little soul. We can't wait to see what is in store for you, to continue to watch you grow, and to enjoy time with you while we have it. You are a blessing in more ways than can be counted, and we can't wait to see the ways God will use you in your lifetime. We pray you continue to deepen your faith and share with others, and allow God to mold you into the sweet young boy you are becoming!

We love you to the moon and back,

Mommy

That Trust Thing Again...

My thoughts have been swirling for the past few days, as it seems to happen after a discharge from the hospital. The whole stay went smoothly, but I was surprised at how much I missed two of my dear friends - one being Andi and the other a doctor friend who moved on to another state to practice medicine. I found myself reflecting back on the aloneness while in the hospital - feeling like those that I knew were in my corner were no longer there to "check in" on me, if you will. And the last time we were inpatient - I had just become close to Andi. At that time I didn't realize I was only going to have a short span of one year with her - but in that one year to be impacted in far greater ways that I could ever imagine. To be educated on so many things, supported in vital ways, and calmed with a level of understanding and expertise that was invaluable in our daily life.



Some days the void of her loss doesn't seem so black and dark;  or so deep and wide. But other days it's nearly impossible to crawl out of the expanse.









“For the LORD God is our sun and our shield. He gives us grace and glory. The LORD will withhold no good thing from those who do what is right. O LORD of Heaven’s Armies, what joy for those who trust in you.”

Psalms 84:11-12 NLT

This one verse right here. Been doing a lot of thinking on that trust word. 

I pray at the beginning of each year for a word.

A word that God wants me to focus on. One that I can learn to fully live by and focus on. In 2014 my word was trust. We had been through so much in 2013, and Caysen was SO sick, I knew that I was still learning to fully trust and grasp what it meant to do so. Trust was what needed to be focused on. Especially since Caysen's Comprehensive Stage 2 was coming up in March of 2014. I had to learn to fully trust in God's plan; the things I couldn't see. It was an incredibly tough year, but I thought I had picked up the meaning of the word. I felt that I lived it, breathed it and learned to completely trust Him with handing Caysen over for such a HUGE surgery. 

So this year, in January, I prayed again for my word. And I just could not shake the word "trust" again. I couldn't figure why I should have the same word, but each time I prayed, multiple times over the course of a couple of weeks, the Lord kept taking me back to that same word. Every. Time. 

Looking back, I know now that was God nudging me back to that word for a reason. He knew what was to come this year, that I would shortly lose my best friend Andi, and that it would be the hardest, deepest and most painful loss of a loved one that I had yet to experience. Sure, I've lost friends and family but it was different for those losses as it may have been expected or seemed like it was time. That was not the case with Andi. So sudden, unexpected and unfair to us left behind that it has been so very excruciating. This year likely holds a surgery we didn't expect to be quite so soon. The difficult decision to have a littler and younger kid do the Fontan surgery isn't an easy one, especially when there can be so many complications when they are smaller. God knew the difficulty of what was to come that I couldn't see and He wanted me to TRUST in Him, yet again. Because the tests this year have been bigger. Deeper. Requiring more strength.

And for crying out loud, that trust thing is the hardest to get a hang of. Trusting that Andi had bigger things to fulfill in heaven. Trusting that taking her now - someone so young, smart, full of promise and drive to help others. The most knowledgeable person I have ever met - that taking her now was indeed for the best. Trusting that the timing of Caysen's surgery is perfect for him and his little broken heart. Trusting that he won't get sick and we can do this surgery before fall and before sick season. Trust, trust, trust, in more ways than one. 

And just when i think I have it down, I realize that I might have wavered, or doubted. For trust walks hand in hand with faith. The faith that God will carry you through, that His ways are higher than our ways, that his plans for our future are better than we can imagine. Even when that involves heavenly plans for someone that we love dearly.

When you do finally fully trust in Him, it's like this verse says. He will withhold no good. Oh, what joy it is, to trust. So even though I'm still a work in progress at finding myself fully trusting, when one does succeed and see the blessings poured out hand over foot, or when you feel that comfort and peace knowing God has the future perfectly planned; it's like no other. And a little bit of trust, goes a long way. Once you start to trust Him fully with what you have, it becomes easier to give Him everything. And let me tell you, as difficult as it is - I KNOW, beyond a shadow of a doubt, I couldn't do any of this without Him.



God is good, even when I don't understand. God is good, even when I don't see a future - or a way out. God is good, even when I'm hurting, or when Caysen or my family is hurting. God is good. He relentlessly and beautifully cares for us so deeply, that we can't fathom what a joy it is to Him, when we trust him fully. Do you trust Him? You should definitely give it a  try. 

A Letter: Caysen is TWO

Dear Caysen,



Well little buddy, you've made it to age two - which is quite the accomplishment considering all you have been through in your two short years. Looking back I never would have guessed we would go through all that we have, that I would have cried so many tears in the past two years, and know all of that and just how much you are THRIVING now.



It was two years ago today that my world was grey (literally!) and you entered this world screaming but with 'wet lungs'. Three days from that day, after just being discharged home, we went through more than we could ever guess, due to your half of a heart that was not detected prenatally or even postnatally.



Despite the warnings about the cardiogenic shock and the damage to multiple organs and resulting brain bleeds affecting your motor movement, your eating habits, and your overall ability to function; you continue to prove to everyone just what you CAN do. And if you get anything out of this letter or living with half of a heart, that is what I want you to focus on. Exactly what you can do.



These days you are still hovering around 21 or 22 lbs. You are getting taller, having gained an inch in the last month or so, measuring in at 32 inches. You wear anything from 12 months to 2T, 2T things swallow you up. Pants and shorts tend to range in the 12-18 month area. Your swimsuit is a 12 month size and we can barely keep it on you! You wear a size 4 diaper, a size 5 shoe, and a grin as big as Texas, with a single dimple in your right cheek that one easily gets lost in.



You continue to grow teeth in the most random of patterns, and are currently cutting some eye teeth. You still only have 4 bottom teeth, but have about 8 on top. Your eating habits vary greatly. On days where you have a fever from teeth, you don't eat at all. We end up using your g tube to push veggies and fruits in you. Otherwise you have a fairly good appetite. Some of your favorites are still hummus, salsa, avocado, hot dogs (you bring me the hot dogs from the fridge allll the time!), the soft and crunchy parts from Daddy's cajun trail mix, steak, most fruits, goldfish, and you really love pomegranate. You still get meds and soy formula through your g tube as your intake is still small in regards to what you need to eat to grow. We keep hovering around that 22lb mark!



You have the greatest laugh. I can't even describe how bubbly and heartwarming it is to hear your giggle. And when you laugh your dimple comes out and I just want to eat you with a spoon, you are just so adorable! You are almost always smiling (unless you are teething), and you LOVE to be outside. You beg to go out almost non-stop, especially now that it's warm.



Finally, you are starting to communicate more! You can say "bye" really well (which sounds like a southern bye-'bah'), mom, dad, brother, bubble (for Bubble Guppies the show - or to blow bubbles), Pearl, all done, more, thank you, bath, night night". Just this past week you started saying "no", and it sounds so cute when you say it (I'm sure that'll change, but for now - your tone is adorable!) I'm sure that I'm missing some, but that's a majority. You sign some words that you don't say, Like "please". Sometimes you will say "more" while signing "please". Even though you don't talk a whole lot, you get your point across. You will walk up to whoever you want to talk to and bang on their leg or arm with your open hand until they respond to you. Once you have their attention, you point. And let me tell you, you are the valedictorian of pointing. You can point at all sorts of things to get your needs met, or to get people to understand you. You answer most questions with "uh huh" in yes fashion, while nodding. It's pretty adorable, because we can ask you all kinds of things and you will mostly respond with a yes, with your slow and deliberate head nod.



Your memory amazes me. I can still show you a picture of Andi and you smile and point. I thank God for using you to allow me to meet such a beautiful person and have her in my life. She played a huge role in your life, and even though you won't remember her in the future, I have some priceless pictures of you two that I will always cherish! I will always talk about her to you, and I hope that you will always know what she meant to our family. We were so blessed to have her in our lives while we did.



You love the water. Showers, baths, swimming pools, puddles. You can't seem to get enough of the water to tide you over. You love being outside and that coupled with water - the swimming pool may be your best friend!



You also really adore your brother. You will talk about him, ask for him, point out things that are his. You know to take his blankie to his room and put it on his bed so he can find it after school. You love to do anything he is doing, eating or trying. He's extra patient with you, and your relationship is quite precious to see.



Another major milestone for you was allowing time away from Mommy and tolerating drop off at the church nursery. Now, you walk in proudly, eager to play with their toys. You will pop your paci out of your mouth, give me a little wave and say "bah bah" and you're on your way. You still love your Mommy comforts, but lately you have been more of a Daddy's boy than EVER! You ask for Daddy all the time, you call for him in the night, you want him to hold you, play with you, and you want to go with him EVERYWHERE. When I get home in the afternoons before Daddy, you almost always point out his mower and his blower and remind me that it's "Daddy's", and then ask to mow.



Your sleep schedule is still pretty whack. You do what you want to and when you want to! You are sleeping through the nights a little better, but some nights you are up and the only way for you to go back to sleep is to bring you to the center of the bed with Mom and Dad. Don't get too used to that buddy - it's just that Mom and Dad are desperate for sleep! You usually go to bed around 9/930 and are usually up to see us off about 545ish. Luckily your Cici watches you during the day so you can nap as you are tired. On a normal day you will nap about 2 hours at midday - but you're always switching it up on us, sometimes needing two naps.



Speaking of your Cici - how thankful are you for her? I can't think of a better way to have things for you. You get to stay home in your germ free environment if needed, and you can nap and eat on demand. It works out great because Physical Therapy and Speech Therapy still visit us at home, and Cici takes care of all of that. She makes you food, vitamixing healthy things to put in your gtube - like beets and kale, she rocks you when you're teething and need extra cuddles, and is there to give you round the clock Motrin and Tylenol when you are teething or sickly. She's been there for you through thick and thin, especially through the really difficult times. We are so thankful she can do this for you!



This fall should be an exciting time for you and Cici. Your dad and I talked seriously about putting you into daycare, but at the time you still seem to have so many demands and it's so expensive for part time care in two places. So far we have decided to keep you at home for a bit, and allow you more freedom. This fall you will start a gymnastics class, and you will also go to a daytime Bible Study Fellowship class once a week. You still get interactions with more kids, hopefully learn some more social skills all while still being able to care for you and your special needs. This will allow us to keep you close in case you get sick or aren't feeling well, without anyone having to miss extra work time.



We are so excited for what your future holds. Of course, in the near future is another open heart surgery to complete the palliative care, but other than that - seeing what else you can accomplish when something is put in front of you is rewarding to see. When I reflect back on everything, I get flash backs of Chris and I wearily dropping ourselves into bed at night after the long NICU days, interactions with doctors, doing everything we could to be a part of your care and getting well, as well as trying to care for your older brother. I vividly remember the outfit you wore that day to the ER, the staff gave it back to us to take home that night because there was no way you were going to wear it with all those lines. At the time, it was like a gut punch. Were you ever going to wear it - or anything for that matter, again? Your daddy and I took that little newborn sized onesie, and we put it on a baby pillow in between us in bed, along with a prayer blanket that was made for you. Nightly, we would clasp hands and pray over it - praying for you, for your future, and for all that God could do in your life. They were often clinging, desperate and begging prayers, but nevertheless, we prayed over that little white button up onesie with animals on it. Some nights, I would be home so late - I would wake your Daddy up to pray, or sometimes even clasp his sleeping hand and pray while he rested. We did that during your whole NICU stay, praying that you would get to come back home to us, believing in God's faithfulness and never giving up hope.



Just the other night, you cried from your crib in your room. Your Daddy went to grab you but before he got up he said "its already 4, can I just bring him here?". I mumbled yes, while he stumbled to get you. In that time I thought back, to the onesie. When it was just your clothing between us for 70 long days and nights, not knowing if you would ever make it home again. And now, you'll cry at home, and we get to put your little 22 lb self between us. Time can change so many things. In two years we went from a tiny and empty onesie to having you really there with us, and we have taken many steps and detours along the way. But hitting each milestone? Is such a beautiful blessing.



Caysen, you are living proof of what you CAN do. Of what God CAN do. You have had more near death and terrifying experiences than most people do in a lifetime. And here you are, showing what together you and God CAN do. You can achieve whatever you dream of! You have proven exactly what you can do by walking and now running after your brother. If you want to run a business, you can. If you want to help others (and I hope you always will), you can. If you want to play sports, I'm sure not going to stop you (cardiologist approved, of course!). But I want you to know, that living with half of a heart may come with disappointments. Be prepared for those. There are times where you may not be able to keep up. Where you will have to sit out. But I want you to remember that is momentary. Please focus on the fact that you CAN do whatever you put your mind to. And you have done it! You can walk. You can talk. You can eat. You can. You can. You can! Don't let the can'ts discourage you.



And that Caysen, is the truth. God is why you can do anything you put your mind to. You can! God is faithful. God is good. He will see you through. You may not always understand why or how or the path it takes to get there, but He will always see you through! The Lord will fight for you, and he already has. If you learn only one thing in this life, I hope that it is just that - faith and trust in the Lord, and just how far it will take you!



We love you so much Caysen, your hiccup laughter, your darling dimple, blond hair and ornery sense of humor. You, my little one, are a perfect example of mercy and grace and God's promises. We love you to the moon and back!



As long as I'm living, my baby you'll be,



Mommy

I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living. Wait on the Lord; be of good courage, and He shall strengthen your heart; wait, I say, on the Lord!

Psalm 27:13-14 NKJV

Nine months

It was just yesterday that I was dropping of my big boy for his first day of Pre-K. And here we are, finishing up the year and I have a Kindergartener on my hands.

How exactly does it happen?

I reflect on just how much he has changed in that span from August to May. In all reality, 9 months is so short - its just the time it takes for someone to have a pregnancy, the time it takes for people to safely lose weight, and its the amount of time it takes to get a copyright. In that time though, big C has had a birthday, a few good holidays and all the seasons in between.

When I dropped him off for his first day of Pre-K, he was still three. He was shorter, ornery, and huggable. He liked extra cuddle time, he needed help making every little decision and he was learning about his personal choices and consequences. He adored spending time with my best friend, Andi. She would come and play angry birds with him on the iPad, give him hugs and build marble tracks with him. He loved it.

He's so big now, the boy that made me a mom.

So opinionated. He moves so quickly, is tall, and is four. He's a great big brother, often sharing with his brother or pointing out the new things his brother has learned. He prays nightly for his friend Andi that he misses, and prays for her family. Every. Single. Night.

He is the most tender hearted, compassionate guy when it comes to his loved ones. He loves stairs, thrives on routine, and still is addicted to his morning sippy cup with milk. (Daddy swears the milk doesn't taste the same if you take the sippy away, so I guess it will stay for now).

Caysen has changed too. He went from just learning how to walk, to trying to run. He went from no teeth, to 12 teeth. (only 4 on the bottom!) He went from super short and barely growing to gaining inches. He went from barely talking to nodding yes and no, signing more and speaking more clearly. He went from crying at drop off to church nursery, to walking in and waving bye, as he's ready to play with their toys. He went from crying in swimming lessons to begging for more, wanting to jump off the side over and over.

I look at how my life has changed. I stopped pumping for Caysen in that time, dealt with another winter, learned how to shoot a gun, took on an intern at work, and Caysen got his first real sick bug, which was super scary for a bit because of course all the signs of sickness are also the signs of heart failure. I learned the importance of a good strong hug. I learned the importance of appreciating others. I learned that I desperately love thieves essential oil to help with any sickies. And, I lost my very best friend, in an incredibly unexpected and painful change to the story that I had pictured in my head. Through her loss, I gained a new best friend. I researched more than you would imagine about health concerns and HLHS. I cried more than I ever thought possible. It's hard to describe the changes that are so small yet they seem like something insurmountable, but really, things are just SO different.

When I think back to where I was in August, I NEVER would have pictured this road. The way things have changed. Doing life so differently than I was before, yet still so similiar.

God has a plan. He knows what he is doing, and He knows better than I do about what will come and what is to be. I have to trust in Him. Trust in the path he is taking us on. Trust that this road that we are taking, this one that I didn't picture, is indeed the perfect path.
God always has different ways of drawing us near, bringing us back to Him. In those moments when we feel alone, those most painful nights, God is closer than we can imagine. He is over everything, walking us through it, by our side. Like it says in Exodus 14:14 - The Lord will fight for you, You need only be still. And in those dark moments, he is fighting to draw you close.

2 years ago in May, I started having health problems while pregnant with Caysen, including loss of vision. If you had told me 2 years ago that this is the road we would travel and the path we would take, if you were to tell me all the things that were to happen to us in that time, including heart defects, open heart surgeries and traveling across the country for medical care; I would NEVER in a million years believe you. I wouldn't believe the people that have come into my life. In the same respects I wouldn't believe the ones that have gone WAY too soon, jerked so painfully out of my life that the hurt remains. I wouldn't believe the things we have seen and done, or the things we have put our kids through. It would be hard to fathom what we as a family could survive and endure; and how we could grow our faith like we have.

But God is good, and always good. We will shout it from the rooftops, just what he has given us. Best friends that save our child's life. (I mean, how many people can say that?) A child that we can look at and just appreciate how far he has come in a short time, that is nothing short of a miracle. Friends, family, and another day to share His great love, and to love each other. Take it all in, friends. If you learn anything from me, please don't miss that! Time here is short, be thankful for what you have loved, and for what you have loved and lost.

It can be so easy to wall off, close up, shut everything inward. But no, we are supposed to share burdens, love unconditionally and speak life into one another.

So thankful for the last nine months. For the growth as a family. When I reflect back, I am sure to cherish each step. Because in those 9 months I learned just how quickly life can change, and how short our time is here.

So...how are you using your time?



First day:



















Last day:

Time. And thoughts...

May already? Where does the time go?

Time.

Time passes so quickly. Caysen is two months shy of 2. I can't believe it! I'm 3 months out from losing my best friend. It seems so short, yet like an eternity. Our lives are but a mist, as it says in James 4. Hard to keep that in perspective, but we will be reunited. Must. Focus. On. That. It's still so difficult, getting further away. You know, the distance and space of time. It's all really hard to wrap my brain around and to fully comprehend.


Pain.

Pain is still so strong at times, and at others leaves a smile on my face. It's weird how it does that. God doesn't protect us from the pain, but he calls us on these paths. And its on these paths that so often its incredibly painful before it's beautiful. It is hard to focus on the beauty in the midst of pain. I know there is beauty in the fact that she is happy, healthy, hearing, whole, loved. Doesn't mean it isn't still painful, though. This translates into many other parts of my life. It is incredibly painful to watch my child undergo procedures or surgeries and to not be able to take his pain. It can be physically painful for me to hold him down while he cries out wanting me to save him. But in the end, I can look at his journey and see how beautiful it has been. How strong and brave he is, the courage that he has. It reminds me what a testimony he has to share with others, and most importantly the new and valuable relationships he has brought to my life.

Trust.

A smart friend of mine said that "insecurity breeds lies and vulnerability breeds trust". Learn to be vulnerable. Be honest and open. It takes bravery, but it allows you to be restored in a way that only God can do. Trust is the single hardest thing to do, because when you trust, you have to believe in others. You wear your heart on your sleeve and risk being hurt much easier and deeper than others. But by trusting others, you are allowing yourself to see true beauty that you can't see if you are guarded and closed.


Loyalty.

Having those people in your life that you can count on. That you can call on to understand you or just "get it", are imperative. Knowing that no matter what happens, you have that person/people on your side, it's a true gift. Don't let those people go. The ones that fight for you, when you forget how to fight. They are a true treasure, with the God given ability to pick you up when no one else can.

And the greatest of these is Love.

Love and appreciation for those that have impacted my life is ever present. I am better able to recognize what is important in my life, my list of priorities has definitely changed. Don't take a single second for granted! Love is never wrong, and is always worth it, even if it causes pain or heartbreak. I love to love.  This includes people, friends and family, as unconditionally and strongly as I am able. Why? Becuase that is how God loves us. "His love is fierce, it is strong, it is furious". God's love for us is so deep, that we can KNOW that he never starts something without having a plan. We may not see the end, or understand it when we get to it, but He has his reasonings. Maybe its because he's saving us from a future we can't understand, or torment we don't deserve. God can help us to heal, He loves us. In His arms we can know the true meaning of love. I've learned the beauty of loving others as Christ loved us. It's one of the best things we can do, and despite the pain, the vulnerability, and the sacrifices, it's truly one of the most honest and rewarding things to do.

Just some quick thoughts on this Cinco de Mayo.

On Grief

Grief.

It's a tidal wave of emotions, a pool you can't seem to swim out of. You seem to have forgotten your life vest, and you do your best to just float.

Some days are good. You accept things, you realize why things are that way and the hurt is minimal. But other days...it hits you like a ton of bricks. It's so incredibly difficult and no matter what you do, you can't seem to get out of your funk. You question why repeatedly, and you just can't seem to understand. The hurt cuts so deep that you would do anything to get away from the pain.

I was watching Grey's Anatomy a few weeks ago they said a line about one of the characters who was undergoing a surgery and not expected to live.

"She's in my head, but I'm not ready for my head to be the only place where she exists."