As I stepped out of the shower this morning I heard the pounding of two little feet running down the hallway. They belonged to a little boy who had proudly gotten himself dressed and ready for school. He quickly melted into tears over having to brush teeth and change his shirt (we just couldn't do stained Lightning McQueen on picture day...mean mommy!) but really because he was up way too early and let's be honest, there's still some anxiety there about "school-school." As I watched him squirm on the floor, crying off and on with the frustration of still being sleepy yet choosing to be awake before the sun was awake, I was reminded of the many tears we all shed last October 1.
Much like his today, mine last October 1st were tears of frustration of a way too early morning, tears of the feeling of complete loss of control, and lots of tears over the anxiety of what the day would hold.
As I looked back over the posts I wrote this time last year all of those same feelings came crashing back over me. It's so hard to believe that it's been a whole year since we watched Derrick being wheeled off, heading to the OR for his third heart surgery.
Hands down, hardest moment ever.
The funny thing is, at the same time, its nearly impossible to believe it's only been a year! Life has moved so far past those seemingly endless days in the hospital. Thank you Jesus!
Today is a day worth celebrating! Last October 1st, as difficult as it was, Derrick was truly given a new chance at life. He tired easily and was short of breath simply walking up the stairs. Today he LOVES to ride his bike, play baseball, ride his scooter...oh, how he loves to RUN! He seriously loves to run. We never, ever saw that one coming! And he's finally growing! Derrick has gained around 7 pounds and grown almost 4 inches over the past year. That's HUGE for our little guy!
As much as we didn't want it, the Fontan was exactly what he needed. And as hard as it is to dig up those memories, he sure has come a long way!
October 1, 2013
October 1, 2014
Happy Fontan-iversary, my sweet, strong, brave boy! We are so proud of you and what you've overcome!
It was a decision that weighed heavily on my heart and kept me awake many nights for close to a year. I forced Justin to talk about it all the time. I cried about it, prayed about it, fought the urge to say we were going to do it, until finally gave in and said, "I think we should do it." I didn't want to be "one of those" people.
I didn't want to deal with the raised eyebrows of people who thought it was a bad decision; those who would say:
"You can't shelter them forever."
"They've got to go out into the real world without you sometime."
"They need socialization."
The list goes on, and on, and on. I didn't really want to deal with people and their thoughts on what we should do with our kids, so for a long time I didn't say anything at all about it. I really didn't want to feel the need to give a long explanation of why we've decided to homeschool. Heck, I don't really and truly know myself! I just know there was no fighting the feeling in the pit of my stomach when I thought about sending my boy away to big school for 40 hours a week. The instant relief I felt when I finally said our decision out loud confirmed for me that it was God urging, not some crazy bandwagon I was trying to decide if I was jumping on or not.
So here we are, homeschoolers.
It sounds sort of odd to me, but I'm excited about it! We all are!
The beautiful thing is, we actually get the best of both worlds. A few years ago a friend I used to teach with started a school for homeschoolers. Oxymoron? But, the school is two days a week and all of the homeschool kids go to "real school" together. It's perfect! They have lunch and recess, art, Spanish and other electives along with their core classes. They'll go on field trips and have a science fair and a wax museum. They have teachers other than us and have to follow class rules and work with other children.
Two days a week.
It's awesome! We just finished week four of school and we're loving it. You know my favorite part? Every single morning of "school school" starts with Chapel. We all start the morning with 30 minutes of praise songs and a devotion for the whole school. I can't even describe what it's like to hear the voices of 200 children singing, "Bless the Lord oh, my soul" together. If it doesn't give you chills I don't know what would!
So there you have it. We're homeschoolers. I've been told by a few seasoned homeschool moms that it's a year by year decision, so that's how we're looking at it. Who knows what the next years will bring, but for now, we're happy with the choices we've made. The kids seem to be happy too, so that's definitely a win!
It was such a mixture of emotions sending this boy off to his first day of kindergarten. We're so very thankful this day came. It was one that for a long time we weren't completely confident that we would see. So thankful!
He had a really tough time the first two weeks...which was really only four days, but I think we're finally past that. Now he's loving it! Thank goodness!!
And Jenny Kate...my girl has been looking forward to this day for a year! She was so insanely excited to go to school!
She's had a really fun time at school and it wasn't super difficult for her. At first. I think she picked up on Derrick's anxiety (the boy wasn't even sleeping!) and after we got through the first two weeks decided she'd start crying when it was time for school. At least they weren't both having a crazy hard time at the same time. That would have sent me over the edge for sure! We're still working through Jen's anxiety, but I'm hopeful that it will end soon. She just told be she loves school but she's never going to stop crying about going. Ha! Drama. I'm pretty sure she'll give up soon.
So far we've loving school days at "school school" and with school at home. Speaking of, it's time for me to drag the kids in from their sidewalk painting outside this morning and do a little school work. I do love these non-rushed school mornings!
I had to be in a first day of school picture too, because it was the first day for all three of us! I'm back in fifth grade and teaching a pre-algebra class at their school. Loving it!
You know it's time to update the blog when your mama asks why you haven't updated lately!
We've been enjoying the summer swimming, playing at the beach, watching movies and just hanging out. I have a bizillion pictures and posts, and actually think about blogging almost every single day, I just can't seem to make myself sit down and do it. This is a super quickie because I wanted to share something you may be interested in.
I promise to be back soon to share pictures! Pinky swear!
Our 5th Annual Hope for BraveHEARTS Golf Tournament is tomorrow!! We're stoked and praying hard that it doesn't rain tomorrow!! We have an online silent auction that some of you may be interested in, so I wanted to share it. It's only open online until 7am tomorrow morning but will remain open at the tournament until the last golfers finish. If you're a Facebooker, here's the link. There's some really good stuff there so go check it out!
If you don't have anything to do tomorrow come join us for golf (teeing off at 9am) or lunch around 1pm. We'd love to have you! And if you're there you can continue to bid on your favorite items! Here's more info on the tournament.
And because I must share a pic...
This was a few weeks ago when we were at Hilton Head. The kids had a blast hanging with their cousin Carter. More to come, for real! ;)
P.S. Excuse the messed up look of the blog. I started working on a new look and got side tracked...the story of my life! Oops!
My boy turned FIVE on Sunday. I thought it was pretty special for a little miracle boy to have a birthday on Easter. It was a great day to rejoice because he and He are alive. My cup runneth over.
In true Shannon fashion I have a birthday blog post in my head but have not found the time to sit and put it on "paper." Eventually it will come. It's one of my New Year's resolutions that I haven't started yet.
I realized this morning though, as I looked at the date in the top corner of my devotion, that today is April 24. Forever that will be a date full of emotion because today, five years ago, when our sweet boy was four days old, we got to hold him in our arms for the very first time. It was only for a few short minutes, but those minutes carried us through a whole lot of really long days afterward.
I think these photos will bring me to tears for the rest of my life. It's hard when you can't hold your baby, but oh how thankful I am to still be able to hold this baby. Five uncertain years later and I still get to hold him.
We're learning a lot these days. The biggest learning lately seems to be happening on the baseball field, although Derrick isn't the only one learning from this whole experience.
Tonight at the end of practice the coach had them run the bases. The first two times Derrick crossed home plate (well, he didn't actually cross...we're working on that concept) he had a huge smile on his face. The third time he was struggling some. By the fourth trip of non-stop running around the bases my boy had slowed down a good bit. He was the only kid out there still making his way around. The rest of his team had finished and he was rounding the corner of first base, but he kept trucking along. Those little legs were moving and his arms were pumping. I could see the determination on his face...eyes straight ahead, tongue poking out...that's D's determined face. He was going to make it around just like every other one of his teammates.
And he did.
And I was in tears as he did it.
It took every ounce of control I had not call him back as he started that fourth lap. As soon as his team did their little huddle I ran out on the field and asked him if he was ok. He was opening his drink and said, "I'm tired!" Nothing about being out of breath, nothing really at all. I think more than anything his legs were probably pooped because he's never run that much in his life.
I am so proud of how much effort he's putting into baseball. He really loves it. He listens to his coaches, he tries hard and he does everything the other kids do, even though he's always the last one finished. He's learning the concepts of the game and what it means to be on a team, and I'm learning how to step back and trust him a little bit. I'm learning to trust him to listen to his own body instead of rushing in and limiting him. It's hard though. I want to see him succeed more than any person in this world, and I don't want to hold him back or embarrass him because I'm afraid he can't do it. Because as he proved to me tonight, he can. He's not the fastest but by golly he's the most determined. And I think that may be even better.
They had their Opening Day game Saturday (which was hilarious, by the way!). I took my big camera, pulled it out at the beginning of the game and realized I had no camera card. Ugh! Crappy phone pics it had to be...
And speaking of learning...this priss has now decided she should be in charge of her outfits and insisted on this ensemble this morning. She's such a mess.
I'm trying to learn to let go a little there too, but we have some color coordinating lessons to go over. :)
Happy first day of spring! Bring on the sunshine!!
Yesterday was Derrick's three month cardiologist check up. He woke up in kind of a serious mood.
His sats were 92 at first, then popped up to a whopping 96! We're still thinking his fenestration has closed on it's own, so that's great news!
He had an EKG which also came back very good! Can't you see the good news all over his face?
Derrick gained a whole 1.4 pounds over the past three months, which puts him at 31.4 pounds now! He's also just over 39 inches tall, which meets a mega goal we've had for a long time. We have a trip to DollyWood coming up soon that he's been "eating" for, and he officially met the mark! Now he thinks he doesn't have to eat anymore. :)
Since we left Jenny Kate at home with Papaw, we took D to Frankie's to cash in on a gift card to ride go-karts. He finally got a little excited. A smile!
Sadly, the go-karts didn't start until noon, but he was completely content to spend his money (and then some) in the arcade. We spent a lot of time at "Sink It." It's pretty much a family friendly version of Beer Pong, but they're pretty generous with the tickets for this game and it was fun for all three of us so it was a win-win. Justin and I are way more into winning tickets than the kids are! Ha!
This little simulator was a big hit. We let him ride it to see how he liked it since we're heading to DollyWood soon. He LOVED it! I think he's ready for some roller coasters!
Long gone are the days when we could plop him on a game like this and him have fun without us having to pay. Ha! The kid can no longer be fooled!
With the last bit of his money he wanted to win Jen a stuffed animal. He is seriously so sweet to his sister when he wants to be! That sweetness even convinced Justin to load a few more dollars on his card to try a few more times....and fail. But it's the thought, right?!
We had a fun morning with our boy, especially since we got a good report from the doc. We actually got a see you in SIX months this time! In the past 5 and a half years a cardiologist has looked at Derrick's heart at least every three months...and now....SIX!! Holy cow! I have mixed feelings about going that distance. I'm so super happy that he's well enough to go that long between visits, but there's that part of me that feels some comfort when his wild little heart is at least listened to more often.
While we've finally made it to this new "normal" phase of life, we still have some things to watch for and decisions to make. The Fontan is by no means a final destination. Yes, it's been our goal for a loooong time, but he's not "finished" yet. He never will be. The series of surgeries Derrick has now completed are palliative, which means they relieve symptoms and allow him to have a more normal life, but they are not a cure. The Fontan has been known to cause liver damage, PLE, plastic bronchitis, and a host of other complications.
Our goal right now is to stay ahead of the game and do our best to make sure Derrick's quality of life stays as wonderful as it has thus far. As his parents, it's our responsibility to make sure he's proactively monitored and not wait until a problem presents itself, which often times is a little late in the game. I know Derrick is held tightly in the hands of our Great Physician, but He has given us great resources here and we want the best for our boy. Over the next little while we'll be researching and questioning, trying to figure out exactly where we need to go from here. This is something Justin and I have been discussing for the past year or so, and now feels like the time to figure it all out. We sure would appreciate your prayers to continue for Derrick and for our next steps for him.
In a normal life it's another month, no biggie. It's trying to remember to write a '2' instead of a '1' when you write the date. It's beginning the countdown to spring...and spring break! It's thinking about romantic plans with candle light, chocolate, wine and roses (do people still do that?! :). It's February. It's Valentine's Day. It's just another month.
But once you've entered into this exclusive club that no one wants an invitation to, the month of hearts takes on a whole new meaning. The "Heart Family" club changes all of that.
February is no longer about chocolate, fine wine and fancy restaurants. Now, February = AWARENESS time!
February is CHD Awareness Month, and in case you didn't know:
Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Congenital heart defects are the leading cause of all infant deaths in the United States.
In the United States, twice as many children die from congenital heart
defects each year than from all forms of childhood cancer combined, yet
funding for pediatric cancer research is five times higher than funding
Each year over 1,000,000 babies are born worldwide with a congenital
heart defect. 100,000 of them will not live to see their first birthday
and thousands more die before they reach adulthood. (Facts via CHF)
Until I became a "heart mom" I had no idea how everywhere CHDs are and how many birthdays they steal. Other than following the journey of sweet Emily Mae when I was in college, I had no idea babies even had heart surgery. I guess there was some foreshadowing there. Emily Mae didn't even make it to her first surgery, much less her first birthday. At least I had heard of heart defects before we were told "There's something wrong with your baby's heart," but many people who hear those words have no idea that babies are born with heart problems. Those are for old people!
If you're reading this obviously you're aware that Derrick was born with multiple heart defects. What you may not know is how many kids there are walking around with long silver scars hidden under their shirts. As you know, they don't look sick. They look like normal kids, not sick at all. They may be on the smaller side, or sometimes if you look closely you may see a tinge of blue around their lips or under their fingernails. But if you didn't see that scar you would have no idea of the complexity that beats in their chest.
Our kids looking normal is a blessing and a curse. If they looked sicker then more people would know about them. They would know about their struggles to simply walk up a flight of stairs without having to stop to catch their breath. They would know that getting them to grow is what feels like an impossible struggle because their hearts work so hard to keep their bodies alive that they're too tired to eat. They would know that nights before yearly, monthly, sometimes weekly visits to the cardiologist are sleepless and filled with "what ifs". And the paranoia of the child getting sick....unexplainable. I literally cringe when I hear people causally chatting about their child recently being ill yet playing with or near my child. A simple illness could land Derrick in the hospital and it could be awful before we even had a clue what hit us. I know it's not that people don't care, it's that people don't know. And that needs to change NOW.
I will never forget sitting in the parking lot before going in to meet the pediatric cardiologist for the very first time. We had been told the day before that there was something wrong with our precious unborn son's heart. As we sat there, both of us terrified to get out of the car, we prayed. We prayed...begged...that there be something that could done so we could bring our baby home and watch him grow up.
If I had control of the world no babies would ever be born with broken hearts. The words "congenital heart defect" would come up with nothing in all of the search engines. Sadly, yet thankfully, I do not have all control. I do know The One who does though. From the time Derrick was diagnosed at 24 weeks gestation we have always prayed that he doesn't suffer in vain, but that his fragile little heart and life be used for God's purpose and to bring Him glory.
The way we feel we've been led to do that is through Hope for BraveHEARTS. We, along with several other families, started HBH to raise awareness and money for CHDs. To date we've donated over $49,000 to MUSC's pediatric cardiology research department. Of course that's a drop in the bucket of billions of dollars needed, but it's something. CHD prognosis has come a long way over the last thirty or so years. There are very few adults who have hearts like Derrick's. It's very likely that had he been born 30 years ago he would have been sent home to die. Instead, we were filled with hopeful options when we found out about his heart.
Someday they'll figure out a cause and a cure for CHDs, but until then, we have to do our part. Please, tell someone about congenital heart defects. You can share the facts, you can share Derrick's story, you can tell a pregnant mama to make sure she doesn't leave the hospital with her new baby before they do a pulse ox check on him. You can get involved with Hope for BraveHEARTS and help us raise money for CHD research (and BraveHEART Baskets!!).
It just so happens that Saturday, February 8th is our annual pancake breakfast! It's a super easy way to help us raise money. If you're local, grab your friends and family and come eat pancakes for a great cause.
(And meet X-Factor's Carlos Guevara!!)
If you're not local but want to donate, you can visit www.hopeforbravehearts.org and donate through paypal or mail a check to HBH PO Box 2924, Irmo, SC 29063. If you want to do a fundraiser somewhere else, or collect items for the baskets or help us with the next fundraiser....WE WANT YOUR HELP! We'll beg for it. Email me!
It still makes me weak in the knees to think about my baby like this:
CHDs stink. They stink for everyone involved. Jenny Kate just saw these pictures and said, "Is dat Bubba? I don't like my Bubba like dat. Get dat off him." They affect everyone, even the little people who you think don't have a clue.
A minute (or a meal :) is all it takes to share a story, to raise awareness. It could save a life. I can bet you anything you don't have to look far to find someone with a special heart. And if you can't find anyone right now give it some time...because you will. These sweet heart babies are everywhere and they need your voice. We all do!!
Thank you, Jesus, for letting my boy have another first day of school!
There have been times in Derrick's life where I have been afraid to think this far ahead. Shamefully, I'll admit as I watched him go through his 3K year there were days I was afraid there wouldn't be a 4K year. Looming heart surgery can do that to you. If course I didn't think like that all the time, but I won't lie and say those thoughts weren't there.
I am beyond thankful that Derrick was able to go back to school! On the last day of school before Christmas D and I went to meet his teachers. (Who are AWESOME!)
He had a cookie and explored the classroom while I talked to his teachers.
He played in the manger,
fed baby Jesus,
and played in the reading loft.
We left school and went for a fun treat. Mommy's favorite, therefore a kiddie favorite too. Derrick enjoyed his "cold hot chocolate" and really enjoyed not having to share it!
After exploring his classroom and meeting his teachers, Derrick was so excited to go to school! He counted down the days over Christmas break. When the morning finally came he was a little hesitant, but still excited. Jenny Kate and I walked him in and Ms R came running out to greet him. He felt so special! I could tell he was a little nervous, but he hung his bag and coat on his hook and walked right in. I got a little smile, wave, and "Bye mommy!" That was it!
While he was getting unpacked I looked over and Jen had taken off her coat and was in the process of finding her own hook to hang it on. She told me she was going to school with Bubba. It took some coaxing (and maybe a little bribery) to get her out of there without a throw down. I kept running into people telling me they were so glad he was back and it took all I had to keep my composure. Jk's mini meltdown was a good distraction. :)
While we waited for school to end we went to our favorite hangout, Target. It's wildly different shopping with only one child! Jen got her "smoovie" and was a happy camper. She only asked about Bubba and demanded we got get him 5 or 6 times, which was better than expected.
We went to pick him up and he was having circle time with his class. He looked as happy as could be. We were worried about how it would be for him coming in in the middle of the year, but all of his new friends were so welcoming. One boy told Ms R that he was "proud of Derrick" for doing so well on his first day. Ha! Jenny Kate and I were introduced to his new friends and she enjoyed prancing around saying hello to all of them. She was acting like a little movie star! Our hands are full with this one! :).
When we got home D excitedly showed me my mail and the two of them got busy picking out which books they wanted to order (which I totally forgot to do!).
He had a wonderful first day and has every day since. He gets excited when its a school day and sometimes angry when it's not! I love hearing about what he's learning and seeing his excitement as he hops out of the car in the mornings.
What a blessing Derrick's school has been, and what an enormous blessing we have been given to watch him grow and learn another year. We are SO thankful.
Jenny Kate has been asking for a cat for some time now. My mom has two cats that D and Jk both love (and love to harass) so we promised her she could get a kitten after surgery.
I'll admit, I was hesitant. Something else to take care of didn't sound super appealing to me. When I was growing up I brought home animals all the time. I even snuck one home once...now I get it mom! Another mouth to feed, a litter box, more vet bills, scratching up furniture, HAIR....not exciting to me at all.
Finally, to keep myself off the "mean" list, I gave in. How could I not when it was 3-1?
So we set out to find our newest family member. Justin scoured the animal shelter websites for potential kitties trying to find the perfect fit for us. My request of a non-shedding cat wasn't taken seriously, but our mission to save a kitty was. We headed to a local animal shelter that euthanized. If we were adding to our herd (we have 5 dogs) we were saving one from the unthinkable!
The kids were stoked. Justin was stoked. I was hesitant.
We walked into the animal shelter and saw the babies. They had four kitties who were about 15 weeks old. We went in the "cat room" to play with them and make our decision. It was easy. Out of the four, this girl on top, came right to us asking for a home.
Bless her heart. For the first week I don't think she ever walked anywhere at all. She didn't have a chance. The kids carried her everywhere! They took her to her bowl, to the litter box, to her bed. You name it, she was carried. She didn't seem to mind a bit. We've had to go over some proper carrying techniques, but other than that, the kids have been pretty good with her. We say, "leave the cat alone!" a minimum of 32 times a day, but we do have a 4 year old and a 2 year old so I'm guessing that's normal.
She has been a hit, I tell you!!
She watches TV,
Takes after-work naps late at night,
tolerates being treated like a human baby,
and loves sleeping in her basket.
She is somewhat insane. I got out of the shower one morning and sat on a stool in the bathroom. Penny decided my head was much cozier than my lap.
She relishes the quiet once the kids have gone to bed and enjoys choosing her own place to snuggle. We both do. :)
We love her to pieces! She is the perfect cat for our family. She's snugly, calm, hasn't scratched or hissed at a child or dog, and she hasn't even been shedding much at all...well, yet at least. I'm sure when summer comes that will be a whole different story, but she's in now. We all love her!
Today she went for her surgery. When I told Derrick that she wouldn't be home tonight he got a little upset. He did NOT want her to have surgery! I walked into my bedroom where he was holding her and I heard him saying, "It's ok, Penn. You're going to have surgery but you only have to stay one night. It won't be that bad, you don't have to stay a long time like I did when I had surgery. It will be ok."
It made me sad that he could relate so much...that he even knows what the heck surgery means, but also, I'm glad he understands. He's a wise little boy with a big ol heart. I know he'll be a good little nurse for her when she gets home tomorrow. And he'll force Jenny Kate to be one too.
As they were leaving to take her this morning JK kept talking about Penny going for her heart surgery. Sweet girl. She knows too much too! They said the sweetest prayer for her before she left. Gosh, I love those babies! And I love seeing them love and care for others. Makes my mama heart happy!