On three separate occasions today I found myself thinking, “it doesn’t phase me”. I wondered if that’s good, bad, indifferent? I wonder what others think by my obvious lack of reaction to things.

On my first occasion I was stopping by the pharmacy. I saw a couple I know with their sweet little boy. He had an ear infection. She so kindly asked how Charles was. I said without a flinch, “he’s got some stuff again, he’s on antibiotics like usual.” And I graciously nudged Charles forward as I said, “you don’t want to get him sick”, as he repeated “baby, baby” numerous times, in awe of someone similar in size. We walked to the counter where the bright eyed pharmacy technician greeted us, “Hey Charlie!” She grabbed out his medications, two large bags filled with breathing medications. We followed formalities and headed towards the door.

Charles’ eyes once again caught the baby, as he repeated numerous times, “baby, baby”. This time he was in my arms and a good distance away so I stopped to let him admire. I caught the eyes of the man I know, sitting there. I wondered what he was looking at as I talked with his wife. He’d briefly look up to Charlie and then back down. I was curious but didn’t think much of it. We wished the baby get well and we left.

Later in the car I realized exactly what he was staring at, as I loaded in my sweet boy, and then his diaper bag, and then, his two large bags of medications. They didn’t phase me. To me they have become a normal piece of life, a vital one. One that we use so regularly and pick up so often. The first few times they phased me, the last time we got an increase in medications they phased me a little. And today, I realized, they no longer do. Today they became “normal”.

On a second occasion today we had a delivery driver come to our door, I know him well, and we ask of each others children. He told me a story about his son, involving blood. While I’ve never been put off by blood, I can’t say I’ve ever been comfortably in a conversation about it. I mean, really, who speaks about blood on a regular basis? Well, turns out, I do. Quite frequently at that. I can speak of INR (international normalized ratio), hemoglobin, CBC (complete blood count), hemolysis, blood leaking, blood clotting, how to clot it, how to pressure dress it, and on and on and on. And what I realized today, that’s not normal. You know what else I learned? It is now “normal” for me.

And on a third occasion. Charles, as he often does, began to cough. This current spell of illness had not yet graced us with the presence of vomit, notice how I said ‘had’ and ‘yet’. I watched him as he coughed productively, and then began to gag, and proceeded to launch every bit of greek yogurt onto the carpet. I then chuckled as he in Charlie style, put his hands up and said, “why?” (So glad I taught him that.) I replied, “yes, why?” and he proceeded to cough and throw up again, back the other direction. I grabbed him and moved to the kitchen linoleum to remove his dirty (put on clean 5 minutes prior) jammies.  I asked his Dad to get him new jammies so I could take care of the carpet, because get what? It doesn’t phase me, it does phase Dad. The entire situation, from the coughing, to the vomiting, to the cleaning up. It now is “normal”. I simply comment, “we’ll probably need to start prednisone soon”. What’s even more, is it doesn’t phase Charles. He went right on back to playing as though nothing had just come flying out of him.

I can’t say that I am no longer phased by anything, because believe me, this kid comes with some real humdingers. I can say that every time I realize how little it phases me, I feel that much more comfort. Comfort you ask? Yes, comfort. I am reassured that I know my child, that I can care for him, and I know the next steps. I don’t need to run to a doctor or call and ask questions every single time. Because I know him, I know him better then anyone.

Don’t get me wrong, there will be things I don’t know. Like tonight, when I heard this crazy loud, heart murmur clicking sound, I definitely thought I would have to call as it got louder and louder the closer I got to him. Until I found his toy remote under his four wheeler with the battery going dead. (Laugh, it’s funny.)

I would hope, that in many aspects of life we could all get to the “it doesn’t phase me” stage. For me that stage brings comfort, assurance, and success. I know that getting to that stage was extremely difficult, every climb to get there is challenging, but every time you get a little higher, it’s fulfilling. So no matter what your personal struggle may be, keep climbing, until it doesn’t phase you.

I’ve seen a lot of posts recently that people would like to stay up until midnight to “watch 2016 die”. While I respect that it wasn’t the best year, for myself and family included, I am glad it happened. I want to fondly say goodbye to the memories we have made and the experiences that have built us and keep them tucked away in my heart and mind.

2016 was a rough one, it started out with trips to the walk in clinic and the ER, and by mid January ended us in our first ambulance ride on our way back to Children’s, where Charlie would undergo his 3rd Open Heart Surgery in under 4 months. However, in that same stay, I was able to find some acceptance in the life we were now living. That third hospitalization opened me up to the heart world and allowed me to become an advocate instead of someone wallowing in loss, grief, and self pity. I found a new light and I found peace with God that I very much needed.

It was around this time that we were strongly supported by friends, family, and those we never met through a gofundme account our friend Lotty set up for us. The help from friends and strangers gave us a reassurance of the good in the world. We thank you all. 

I was also introduced to a Mom’s group at Children’s where I was able to share my experience without feeling judged or like I was bothering someone. Through that same group I was able to meet my best heart mom friend, Courtney. And without her I don’t think I would have made it through some of the many struggles of this year. She and her sweet family have become dear friends to us, and without 2016 we wouldn’t have gotten them.

Charlie’s surgery in January was the first of it’s kind performed by his surgeon, and as far as anyone remembers, the first at Children’s. A rare parivalvular leak challenged his surgeon and sent him on a mission to do something marvelous. He succeeded and that success grew our relationship with him even closer. It also challenged Charlie to prove he could succeed yet again, and well, you know the rest. I don’t regret or want to change that.

In the month of January, post surgery, Charlie was featured on the Prairie du Chien, Wisconsin, Eagles Heart and Cancer Telethon, thanks to Uncle Tom and Aunt Cath. His story was shared in an effort to help raise funds for research. They raised $43,723. We were a part of something amazing!

February brought along Congenital Heart Defect Awareness week. We were lovingly supported by so many people as they posted their photos to Facebook with #iwearredforcharlie. In an effort to raise awareness, I connected with New Ulm Mayor, Robert Beussman, who graciously signed the proclamation to recognize CHD week in New Ulm. I was also given the original copy that I have saved in my hutch, that success for me, be it small, was the stepping stone I needed to search for bigger ways to raise awareness.

In March, Charlie was a recipient of the Tim Orth Memorial Foundation Basketball Game (thank you Mr. Morgan for connecting me to it) and was honored at the basketball game. He also received photos with several mascots and money towards his health expenses, as well as being featured in the Bird Island news paper. This was a huge honor and an amazing event to be a part of! 

The months ahead brought several respiratory illnesses, specialists, follow ups, medications, hospitalizations, and so on and so forth. They were long, and tiring. However, through those illnesses we were able find a weak point of Charlie’s, in swallowing. He began Speech Therapy to correct it. Through this we met Liza. She was a wonderful blessing to us as she was the first to successfully get Charlie using any form of drinking device other then me! This was huge progress for him and we needed it.

We were also blessed during that period with Callie, Charlie’s Physical Therapist. Without his constant issues with breathing, we wouldn’t have been led to Callie. We began seeing her to help Charlie breathe with his chest, not his belly. He quickly succeeded in this area, thanks to some stretches. And proceeded on to roll, crawl, stand, and walk within a few short months of her services. He went from delayed to excelling, and at a time when we struggled to find hope he would ever breathe normal, we needed that success, we needed Callie.

Moving forward the Spring and Summer brought us wonderful chances to advocate as a family. We entered 5, 5k races: Citizens Bank, Heartbeat 5000, Bavarian Blast, Lasting Imprint, and Super Hero Heart Run-Omaha. We wore our #iwearredforcharlie shirts and were often joined by friends or family in the races as well, showing their support. Charlie was also largely supported outside of the races by everyone who bought a shirt, and we are so thankful to Lindsay for designing them for us!

August brought along a humdinger of a curve ball as Charlie developed a blood infection. This caused two separate ambulance trips- one for the initial infection and one when the home antibiotics tried to explode him (literally). As well as an ER trip in the middle of it for an allergic reaction. During this stay we were introduced to Pastor Kom (Thank you Pastor Sutton) who was a great support for us in the hospital.

In the middle of the two stays we suffered the loss of my Papa. This was a detrimental loss to me and my children and one that I have not come to terms with yet. However, it was said to me that Papa went to Heaven so that Charlie could get better, and I believe that to be true. Papa was always deeply concerned about Charlie and what better way to make sure he’s okay then to go straight to Jesus.

In September, Joe and I celebrated 5 years of marriage on our Omaha trip. What a roller coaster of 5 years it has been, but what a success to make it 5 years and know that we have defied the odds of the world. We have successfully made it through the worst year of our lives together, and stronger together because of it. This is a success we take great pride in.

October would bring another surgery for Charlie as we upgraded him to a port. This has proven to be a wise choice and one I would not take back. It also allowed us to keep our friends in Oncology for quite some time, we have grown quite fond of them, and they seem to like him.

Thanksgiving, as it turns out, is not Charlie’s favorite Holiday, or maybe it is? He has decided to make it a tradition to spend it with his Nurses at Children’s. While this visit was none to exciting and we don’t have any idea why he had a fever. We did find out his blood pressure medication was no longer keeping him down enough and he was in need of an increase. Without that impromptu stay we wouldn’t have discovered this. What I personally gained from that trip up was a profound thankfulness for the ambulance driver (Josh), that we did not end up in a ditch in that horrible snow storm. As well as the reminder that I can’t control everything, despite my greatest efforts, and letting go and letting God is always the best choice.

And lastly, the month of December. It brought us the worst case of croup I’ve ever seen. Which came with Adenovirus, which in turn gave me pink eye too! (Thanks for sharing Charlie.) This became one of his worst rounds of illness, which despite great efforts, ended in more steroids and an increased asthma plan. Which also left me high and dry on personal leave and vacation days from work, as I stayed home to care for him. In this, I was reminded how wonderful and gracious people can be, as my coworkers generously donated their own personal leave to help me.

Because of his early in December illness, we were also fortunate to get his generally two week long, “healthy” gap over Christmas and New Years. We were able to enjoy time at family get togethers that we had to miss last year.

This year we have been tested beyond measure. We started off the year hitting about as low as we had ever been. We seemed to hit speed bump after speed bump, rolled (more like fell) down a few cliffs, and climbed mountains that seemed like Everest. But with every single trial we faced, we found success. We found the highs to go with every low. We traveled the road together, we picked up friends along the way, we said goodbye to loved ones, we learned about ourselves and what we are capable of, and we rejoiced in our accomplishments.

My dear work Mom (before I ever had Charlie, maybe even before Mya) made me a picture once. It was a storm and rainbow. You can’t have a rainbow without a storm. We had a lot of storms, but we had some awfully beautiful rainbows.

Earlier this year I began reading in the book of Psalm. I must confess that I did not make it as far in as I would have liked (this is something I continue to work on). But when I open my Bible I find several passages that I made note of.

Psalm 2:12 Blessed are all who take refuge in him.

3:3-6 But you, Lord, are a shield around me, my glory, the One who lifts my head high. I call out to the Lord and he answers me from his holy mountain. I lie down and sleep; I wake again, because the Lord sustains me. I will not fear though tens of thousands assail me on every side.

9:18 But God will never forget the needy; the hope of the afflicted will never perish.

10:17 You, Lord, hear the desire of the afflicted; you encourage them, and you listen to their cry,

16:1 Keep me safe, my God, for in you I take refuge.

17:6 I call on you, my God, for you will answer me; turn your ear to me and hear my prayer.

18:1 I love you, Lord, my strength.

And my last and favorite: 18:16 He reached down from on high and took hold of me; he drew me out of deep waters.

I will stay up tonight (Lord willing) to wish 2016 goodbye, to celebrate it, and thank it for all that it gave to me. I will welcome 2017 with open arms, ready to learn new things and celebrate all that it has to offer. I will embrace new goals, new trials, and praise Jesus for the time he has given me, whatever it may hold.

My personal goals for 2017 (I feel that if I share I’m held accountable):

1. Jesus, without Jesus I would be no where.
2. Soak up that family (this is always on my list)
3. Learn more- there’s always something you don’t know
4. Blog more- its therapeutic for me and your feedback has been so wonderful to hear
5. Focus on making myself better, I can’t be the best for my family without being the best for me (so cliche, but true)
6. Advocate-for my son, my family, myself, CHD, and anything else I’m passionate about (I had to make a 6 because I always do things in threes, fun quirk you didn’t know about me.)

May you have a Blessed New Year and thank you for sharing on this journey with me. Please share my blog to get it out there. If I have touched one life with my writing then I consider this a success.

Love Always~

The irony of life never ceases to amaze me.

On November 23 of last year, at 2 a.m., I was asked to leave my son’s hospital room because he was crashing and they needed to act quickly. A very kind nurse walked with me down to the family lounge and waited with me. She asked me questions about Charles, my family, where we were from. She did a great job distracting me.

And then she left to check on progress, and I absolutely lost all composure and called my husband in a hysterical mess at 2:30 a.m. (I had sent him home, I wanted normalcy of some kind for our daughter. Charlie was stable, so I sent him home.)

He asked if he should come back right away, I said no I still didn’t want to worry our sleeping little girl, so I told him to take her to daycare in the morning and come up after.

I proceeded to cry hysterically after getting off the phone. My anxiety climbed every second I sat there. My thoughts racing a million miles a minute. What are they doing? Is he ok? What if…? You name it I thought it. I prayed. I prayed hard. I begged and pleaded.

And then that nice nurse came back into the room and told me they were done, he was successfully intubated and sedated. The Doctor would be in shortly. I’m not sure where she came from, or her name, I have never seen her again, but I thank her.

I anxiously awaited, for what seemed like an eternity. And then the Doctor came, she sat down in the chair next to me. This was going to be one of those serious talks.

His lungs had filled with blood. His mitral regurgitation was so severe he couldn’t tolerate it. And his lungs had collapsed. “If we didn’t intubate him, he wouldn’t have made it through the night.” The words slapped me in the face, punched me in the gut, and squeezed the beating heart in my chest so tight I thought it would explode. She saved him. She and her wonderful medical team, they saved him.

It would begin the most depressing, frustrating, and trying hospital stay we would have. But I had him.

That date-November 23 at 2 a.m.- haunts me. It haunted me that day and it haunted me leading up to its anniversary. My anxiety running on high all of the dreadful November 22, when we had returned to the hospital with him the last year.

And now as we lead up to 2 a.m., on the 23rd, I’m riding with my son in an ambulance, in a snow storm, on a high anxiety trip. I can hear every rumble, every spray of slush, every slide. I can feel every slip of the wheels, every bump. We were even flagged down by someone in the ditch. But I can’t see more than a fuzzy car light out the window, into the dark of night. And once again I pray, I pray hard.

And while this year, less severe then the last (at least I choose to believe so), it comes with its own challenges and pains. It comes with the fear of spending Thanksgiving in a hospital once again, disappointing a big sister at home, and sleeping (if at all) on a plastic couch.

To the nurse in the ER that told me I handle it all so well, Thank you, thank you for saying that and for letting me tell you that I don’t always. Because there are days, like today, that inside, I can’t.

And now it’s 2 a.m.

Today and Always God is in control.

Nothing is truly ours to decide.

Nothing is predictable.

Nothing is fair.

Not everything will turn out how you think it should.

Not everyone who disagrees with you is wrong.

Being angry does not make things better.

But God always has this.

“Would it help?”

A few months ago I had a chance to sit down with my husband and watch a movie. This is something very few and far between. We watched Bridge of Spies (Steven Spielberg, 2015), with Tom Hanks and Mark Rylance. It was a great movie. I pulled something very helpful from one of the main characters. While he was in jail, being accused of being a spy, he didn’t get angry, ever.

When his lawyer (Tom Hanks) says, “You don’t seem alarmed.” “Do you never worry?” “You’re not worried?”

He (Mark Rylance) responds every time, “Would it help?”

No. No it would not help. No it does not help.

What does help?

Praying to God, asking God for help. No matter your feelings, your worries, whatever it is your struggling to deal with: the argument with your spouse, the upcoming surgery, the ever prominent election and the future of America, your meeting at work, and everything in between. Take it to God. God can help. God will help.

Let Go, and Let God

I’m going to share a few things with you that have helped me through the past year, they apply to more then just my own personal life circumstances.

Isaiah 41:10 (NIV)

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

My message today is not my normal, my message today is to remind you that no matter what happens, God is in control. Go on with your day. Love your neighbor. Love your family. Love yourself. And I urge you to Love God.

Today and Always God is in control. Pray. Let Go, and Let God.

One day as I drove through the pharmacy window it struck me out of no where, as it normally does. I wondered what they thought of me as I picked up medications, again. By now my local pharmacy has come to know me by first name, by my face, and most likely, my car. Whether I pull up to the window or I go inside, they say hi to me with friendly smiles. They now ask me for the date of birth as a formality, not that we both don’t have it memorized at this point. Sometimes they don’t even ask before I rattle it off. They have become someone I depend on weekly. Then I realized, it’s not just their ability to be open, know my information, or hand me a bottle that I depend on, it’s their ability to make the medication.

For many people a pharmacy is somewhere you get antibiotics, pain medication, and your typical prescriptions. For my family, a pharmacy, a pharmacist, and the techs they work with have been life changing. On a daily basis my son takes a minimum of 7 rounds of medication, some days many, many more, depending on his status. Those medications, for him, are necessary in keeping him alive.

During ER visits and hospitalizations, often the medication given through IVs is life saving. They keep his heart functioning, his airway open, they prevent life ending blood clots, they stop painful infections that could go straight to his heart. These are all miraculous medications, medications that we could not get to without a pharmacy.

Pharmaceutical staff work with chemistry, mathematics, the knowledge of what medications can combine with others, how much to dose at what concentration, which need to be refrigerated, which can’t be kept in the light, which medications have to be in black bags (or I’ve been told they become hazardous), and so on and so forth. The variety of medications available is impossible to count and would be even harder to remember.

Doctors often get all of the credit for ordering the medications that help you get better or stay healthy, depending on what you need it for. However, when you stop to realize how you get that medication, it’s your pharmacy. The pharmacist, the techs, and those that often work behind the scenes. Unheard and unnoticed. But ultimately creating and measuring out those every day or life saving medications.

So to the pharmacy (whether you are local, hospital, home health, or ER), thank you. Thank you for working day in and day out, days, nights, and weekends, thank you. You have more then once provided us with life changing medications. So for every time you have worked behind the scenes and gone unnoticed, for my son, myself, or anyone, Thank you. In this house, you do not go unnoticed. Your presence, on a daily basis, is very, very noticed.

I’ve contemplated all day today the right words, the right feelings, the right anything. These days there’s very little that seems “right”. 

Today marks one year since we were given Charlie’s diagnoses. A video that plays in my mind most often, “your son has a serious heart defect”, spoken so kindly by the Cardiologist. We squeezed Charlie tighter and tears began to flow.  He proceeded to draw us a picture of his defect, mitral stenosis, as we awaited a room on the cardiovascular intensive care unit. 

At this time one year ago we were waiting down the hall as they inserted his first of many IVs. We were learning about the CV unit for the first time. We were learning about a world full of broken hearts, lines, monitors, beeping, medications, saturations, blood pressures, heart rates, plastic couches, shared showers, and commercial coffee. We were learning about our child. 

This past year was both long and short. The parts we wanted to be over took forever and the moments we could’ve stayed in forever disappeared in the blink of an eye. We made amazing friends that feel more like family. We have celebrated accomplishments and we’ve suffered defeats. We have grown in our faith. And with God’s help we have pushed on every time. 

In this past year of being a heart mom I have felt myself hit every emotion on the scale. I’ve hit highs and I’ve hit lows. During each of our three extended stays this year I had a different mood.  I started with terrified, shocked, and eager to learn, I moved on to angry and depressed, and the last stay I evolved into motivated, ready to advocate, and optimistic. Most days I’m still in that last stage of motivated and optimistic, and I’m always ready to advocate. But there are always days when I just absolutely can’t. 

Today I hit a wall (reasons outside of Charlie were not in my favor either). I left my first home visit at work and I sat on the curb by my car, and I cried. Every emotion of this year swallowed me up in one big gulp and I couldn’t fight it. And then I got in my car and I cried some more. As I sat in the drivers seat I looked for a sign that it would be ok. I looked out the window, I looked in the mirror, I looked everywhere, and then as I reached for a Kleenex in my purse, I found it. My sign was right there in the form of a red farmer hanky, with the writing L. Menk on the corner.

That’s when I thought to everything my Papa taught me and everything he wanted for me. And the things that stood out were stubborn will and strength. He gave me those, they’re not going anywhere. And today he reminded me of those, my two most powerful attributes. 

This year in and out of the hospital has been intense. We’ve beat three open heart surgeries (one that was a first for our hospital), one general surgery, an emergency life saving intubation, several withdrawals, a collapsing lung, a blood infection, asthma, more respiratory illnesses then I can count, and so many other things. None of those things ever felt “right”. 

Tonight I sit holding my sweet (though oh so cranky from teething) baby. Usually while I hold him I assess his breathing, his click, and his heart rate; tonight I’m just holding him as him. I’m watching his sweet eyes flutter, his hands twitch, and his toes wiggle as he sleeps. And that feels right.  

It’s 4am on a Sunday Morning and I have just finished hooking up the last (can’t believe I was able to use that word!) of 294 doses of IV antibiotics. 

I’m a Heart Mom and proud of it. I knew it would be difficult from the moment I heard the words “serious heart defect” on that dreadful day. I knew challenges would face us. But none of those challenges can you really prepare yourself for. 

I was asked a couple weeks ago by a man I had only known for maybe 6 weeks (whom I met the week before the blood infection appeared that started the antibiotics) why I always look like I’m going to cry. 

Initially I told him it was RBF (if you don’t know google it). And I was offended. How dare someone I hardly know ask me that? Do I really look that way? And I found myself asking everyone else around that night, if they thought the same. 

It wasn’t until the next day when I stopped to think. I wasn’t offended at all. What he said was spot on. Truly my emotions have been in about a gazillion different places the past year. They have changed. At the drop of a dime I COULD cry. I feel things harder. I love things more. I empathize with my fellow heart moms. I read a story on a baby with CHD and all of those emotions flood in and I can’t stop them. The other night I watched one of my favorite shows and there was a baby with CHD who had HLHS, a dear friend of ours has that. And I cried. 

Besides the past year I’ve been through, I haven’t slept more than a 2 hour increment (2 hours may be a stretch) in 6 weeks! That’s fully functioning taking care of a medically challenged, horribly teething, nursing all night on top of it, dare devil of a little boy. Working a full time job (which is way more challenging then one would think) and taking care of one 4 year old whose past year hasn’t exactly been a bucket of candy (although that’s all she wants to eat!). That doesn’t include laundry, cleaning, dishes, groceries (of which I currently can do none because I haven’t made it to the store, so we have no laundry detergent, no dish soap, no toilet paper, and we are down to 3 Kleenex (that aren’t hiding under someone’s bed) and one roll of paper towels). ***I would not trade a single piece of any of this, I am growing as a mom, person, and friend; but I’m entitled to complain occasionally, let’s just get that straight*** 

When asked why I always look like I’m going to cry, how I should’ve responded was, “go read my son’s caring bridge”, “go read my blog”, “search #iwearredforcharlie”. (That’s one of those loaded answers you don’t want to throw at someone so you say something else.) If I replied any of those ways you  wouldn’t question why I look that way. You would understand. And you would know that when I do smile, it’s completely genuine. 

So now, it’s been a half hour and I am going to shut off the 294th and last IV medication. And I’m going to cry. Because I’m tired, I’m sad it ever happened, and my favorite reason to cry, because I’m so extremely happy to put it behind us and I’m so proud of that little boy for dealing with it. 

And then, I’m going to sleep. 

On this day I will mourn for you. I will flash through every memory I have with you, there are so many that it may take me a few days. I will cry rivers and my heart will continue to break at the loss of you.

You were a wonderful example of a Christian man, a man to be admired, a man to be envied. And if I do say so you were quite the handsome man (nice work Grams, I would’ve left Maryland for him too). You were a man of firm discipline and abounding in love for your family.

You held me as a baby and you crawled around with me. We spent many nights sleeping in the living room together watching Red Green and MAD TV (totally age appropriate). You taught me to play Canasta, Crazy 8s (bugs bunny cards), Dominos, and Chinese Checkers (the best when I was able to finally beat you). You taught me to shoot the BB gun out by the no longer existing pasture. You taught me how to feed the calves and steers, and everything I know about cows. You taught me how to bale hay and tighten the twine (even though you never actually let me do it). You taught me how to drive tractor, yelling at me the whole way, but I learned just the same. You and I spent many a days during harvest, driving to the elevator and back, eating peanuts. We picked apples and you would slice them for me under the tree, we dug up carrots and washed them in the cow tank, we picked fart plums, and zucchini from behind every shed on the farm.We raised and butchered chickens. You helped me make my own play house out of a shed in your grove, and you made me a mail box for it too!

You made me anything I asked. When I wanted a doll bed, I got it. A bench and chairs, done. When I wanted a barn because you had made the boys one, I got that too. You made most of the picture frames in my house. And my baking rack and bread box, those remind me every day of how amazing you were.

When I got my first real boyfriend you threatened, “I’m not afraid to go back to prison.” And you gave him a chance. When he broke my heart you held me close as I cried. While this may not have been in your comfort zone. You did it anyways.

My children were both fortunate enough to know you. You gave them many of the same joys you gave to me. There’s nothing quite like a great-papa. And there really is no comparing to you. They will always know you, I’ll be sure of that.

I could go on and on with all of my memories, probably filling pages and pages and pages of a book. I will remember all of those memories, and the ones I keep in my heart, and they will never leave me. I know you have found peace with Jesus. You deserved that. My sister-in-law put it perfectly, “God is just making sure Charlie’s Guardian Angel supply is fully stocked.” He now has the best one he could.

Today, I will mourn for you. And I will have your hanky, a pack of tic-tacs, the cross necklace you gave me when I was a child, and I will always have “me too”.

Me too, Papa. Me too.

If you would have asked me 10 years ago where I thought I’d be on this day. I would have told you that I would be married with children. We would have a nice happy life. My husband and I would be going to work to support our family. We would spend our night at our children’s events and have family supper. We would be happily in love with the occasional bickering as to be expected. We would be your “normal” family. 

In reality what I’m doing today. Today I’m in an ambulance with my son for the second time in two weeks. Today I’m continuing to mourn the loss of my Papa who stuck around just long enough for me to get out of the hospital, to come watch him pass. Today I’m tired. Except that’s an understatement. I’m exhausted. I’m emotionally and physically and completely drained. And yet, I got up this morning and I got my child to the ER and I demanded that ambulance to the cities. 

Despite every ounce and shred of nothing that I feel like right now. I can do this. I’ve been doing this. I will continue to do this. 

This is my today. And while it’s not the today I would have expected 10 years ago, it’s the today I’m going to get. This is the day that God made for me. There’s a lesson in here. 

Yesterday my Mom and I joked that I had more balls then 6 men. Sorry, it’s out there, it’s true. And when all of this started she said to me, “GOD chooses special moms for these babies. Moms that know just what they need and can deal with the challenges with His help. I truly believe that Shelby.”

10 years ago I believed in God. Today, I know that I can do nothing without God. 

“I walk with Jesus all the way,

His guidance never fails me;

Within his wounds I find a stay

When Satan’s power assails me;

And by his footsteps led,

My path I safely tread.

No evil leads my soul astray;

I walk with Jesus all the way.”

By Hans A. Brorson 

Today is a miracle.

From the day you were conceived, you were a miracle. You were a tiny little person who we never thought we would have. I was sure your sister was the only child I would be blessed with, for reasons we kept to ourselves. I had come to accept that.

And then, in one single day, you were there. God put you there. I cried for hours in disbelief, in utter shock, awe, and miraculous amazement. And for 39 weeks I carried you, so very close to me, I kept you safe. I loved you, I loved you for reasons you could never understand. You were my miracle baby, the baby that I wasn’t suppose to have, but the baby I ultimately needed. You would go on to teach me how to be me, how to embrace God, how to love life, how to advocate, what it truly means to be a mom, and oh so much more.

You were a sweet beautiful little boy. 7lbs 14oz, 21 inches long. Pure perfection. We took you home, we loved you. Your sister loved you, she wanted you so badly. You completed our family. And we would continue to love you, always.

Then one day, I felt unsettled with you. I felt something was just not right (your ears I assumed). It was on that day when our real journey began, when you would show us what a true miracle you are. “I hear a heart murmur,” the Doctor said. As those words rang in my head, I was sent to get you an x-ray, an EKG, some blood work, and a follow up with a pediatric cardiologist.

A couple weeks later when you were two months old. We would see that pediatric cardiologist and hear words that instead of ringing would be forever burned into my brain. “Your son has a serious heart defect.” I remember the millions of emotions that ran through my mind, my heart, my body, my soul, every inch of my body was crawling. I was devastated, terrified, confused, overwhelmed, and I felt anger, so, so much anger. I was angry that this had happened, angry at everyone that said, “murmurs are usually nothing.” At that moment I wanted to punch every single one of those people. But that wouldn’t have changed anything.

We were given a room in the Cardiovascular Care Center of the Children’s Hospital and lots of medical mumbo jumbo; that at the time was just that, mumbo jumbo. We would spend the next week preparing you (and ourselves) for your first open heart surgery. In that first surgery they would repair your valve and you would exceed all expectations. You healed, you thrived, and you went home (on numerous medications) to be Mickey Mouse with your sister Minnie on Halloween.

You would go home, only to return three weeks later, failing miserably. That night I would hear words that would forever ring and burn and haunt my sleep. “He wouldn’t have made it through the night”(without intubation).  -STOMACH THAT-  You would remain intubated for your first Thanksgiving, and for over a week, before you had your second open heart surgery. This time you would receive a mechanical valve (rare in infants). With this came extra struggles, collapsed lungs, and painful withdrawals where you appeared to be possessed.

You had difficult veins and would require another surgery to put in a broviac line. Then you began healing, thriving, and again exceeding expectations. And we would take you home in time for Christmas.

You lived in a bubble. No one sick was allowed. Hand sanitizer was our best friend. We didn’t leave the house except to go to the doctor. You would receive nursing visits to check your broviac dressing and INR, you were now on Coumadin (a blood thinner). You required twice daily flushes and more medications. And then one day the bubble popped, and you would be diagnosed with croup, and then pneumonia. A week later you would have a low hemoglobin, and within a day or two it would plummet. Sending you (and mom) back to Children’s, this time by ambulance. We would again do the walk of shame as we entered our second home on the CVCC. You would continue to survive on dangerously low hemoglobin for two weeks while they ran never ending blood tests to find out why. Only to find out, it was again, your heart. You would stump the surgeon with a rare perivalvular leak on your mechanical valve, never seen before in their facility. Opinions would be sought from around the country. You would undergo a third open heart surgery. You would be put on bypass three times, and despite the odds you came out with your chest closed and a beautifully beating heart. And again you would exceed expectations and you would thrive. Once again we took you home. Third times a charm.

This time I would be approved to take over complete care of your broviac line so you would no longer need nursing visits. We made new friends in the Oncology department of the local clinic where the nurses would swoon over you as their youngest patient and draw your blood from your line. You would become part of their family.

Again we kept you in a bubble. Yet somehow you got sick. We knew our clinic routine very well. Call at 7:30 a.m. Get in to see your primary. Take the stairs down to Oncology where they would draw your blood for a CBC. Walk back up to Radiology where you would get your chest x-ray and back again to wait for the doctor. Only to learn you had croup, bronchitis or pneumonia, that may or may not be treated with an antibiotic. That antibiotic would send your INR all out of wack and we would spend the next two weeks drawing blood every two to three days to stabilize it again. We’d increase your nebs to what seemed like fifty a day. And we would repeat this cycle often. Thankfully only once ending in an overnight stay at the Children’s Hospital to make sure you were getting enough fluids.

You went through physical therapy to stretch your chest in hopes to help you breathe, through which you thrived yet again. Quickly you began to roll, pull up to standing, and would begin to take steps! You excelled and exceeded expectations, as you always do.

Eventually I got you a referral to a Pulmonologist where you would be put on an asthma action plan and sent for a video swallow study. This resulted in Reactive Airway Disease being caused by aspiration. You would begin to see a speech pathologist for this, she taught you how to use a straw cup, and you completed the vital stimulation program (4 days a week for 4 weeks, and then an extra 2 weeks). Though you would continue to get sick every month and a half. And we would repeat our routine again. Soon you would begin getting sick every two weeks, requiring frequent rounds of steroids and on occasion increased antibiotics.

Your every day consists of medications, nebulizer treatments, line flushes, and making sure you don’t hit anything too hard that could cause internal bleeding as you have begun to walk, almost run. While your life may not be the life we initially pictured, I no longer could picture any other. This is your “normal”, our “normal”.

Many of your milestones were met in a hospital bed: rolling over, your first tooth, the first time you said mom, your first cracker, and many others. There are so many things I feel that we missed. Often I feel that we missed you being an infant. And then there are so many things we got to have first over and over again. Your first smile (we got 4 of those), the first time you nursed (your favorite form of morphine), the first time you squeezed my finger, the first time you opened your eyes, wiggled your toes, your fingers, your cry. And the first time I got to hold you in my arms.  I got those experiences, more then once, and every time, the feeling got better. And every time, I loved you more. And I was blessed to be able to spend the first ten plus months of your life by your side, every day and every night.

Your every day will always consist of medical mumbo jumbo. But your days also consist of so, so, so much more. Your smile could light up the night sky, your laugh could soften the hardest of hearts, your happy screech could break glass, your jibber jabber brings joy to a room, your strength is inspiring to many. And then there’s your heart, your beautiful broken heart. Your tiny broken heart. Your heart knows love. It has been shown love. Your heart spreads love.

You my sweet, tiny boy, you are inspiration. You are joy. You are energy. You are light. You are compassion. You are empathy. You are grace. You are thankfulness. You are love. You are a blessing. You are a miracle. You are my miracle.

In this year of your life we have met many new people, many have become friends. We have shared in trials and triumphs. We have prayed and been prayed for. We have run through every emotion known to man. We have changed. We have grown. We have grown closer to God. And while we did not always know what we needed, he did. From that very day he put you where you were meant to be, He knew your purpose.

Today as you turn one I will celebrate. I will celebrate all you have been this year. The good, the bad, the horrifying, and the magnificent. I want to remember it all, without all of those pieces you would not be you. And I love you. Every terrifying (your recent lack of fear while climbing), wonderful (the fact that I still have you to be terrified for), amazing part of you.

Happy First Birthday Charles! Happiest of birthdays to you.

Today is a miracle.