I do know.

I have been asked many times over the past four years, “How do you do it?!” My response is always, “I don’t know.” But, I do know.

Holy Moly! What a year! I think we could all agree we’re not sad to say goodbye to 2020. It’s been a very different year.

Yes, I said different, not difficult. Now, hold on a minute, before you get your undies all in a bundle, I’m talking about myself, not anyone else.

Covid has brought on so many big opinions, death, darkness, distance learning, and quarantining. For us though, having to quarantine is nothing new. We’ve been living a quarantine life the past four years.

We might be stuck at home, but in my house, we have food on the table every day, clean water to drink, a roof overhead, and a whole lot of love.

Others might disagree with me when I say this year has been different, not difficult. We ventured to Cincinnati to have them give us some not so uplifting news. Sam spent forty-five days in the hospital. I guess we have had some pretty scary moments, but none have had anything to do with Covid. We’ve definitely had our fair share of unfairness handed to us, and it’s not only Sam who gives us a hard time. Like I’ve mentioned before, he’s not our only hard kid. Someday I know, I’ll be able to share our other story, but for now that story will have to wait.

For now, I can tell you, Covid, distance learning, Sam, and the other story has been trying, but my joy, cannot, and has not been shaken.

This might sound cliche, but from my experience, when you fully choose to have Jesus on your side, your joy can’t be taken from you. I’m not saying you won’t have your moments. I believe Satan will try his very best, EVERY opportunity he gets to steal our joy, but he won’t be able to if we truly accept His love for us.

To me, this doesn’t mean going to church every Sunday, and it’s far from being perfect.

It’s a relationship, NOT a religion.

You get to save your Debbie Downer moments for Him. It’s a person you can cry heavy tears to as many times as you want, and you never have to feel you’re being a burden. With Him by your side, you can pick yourself up, and slap a smile on your face, even when you don’t feel like it.

He’s the one who whispers, you’ve got this. You are not alone. Keep going. Just put one foot in front of the other. One day at a time.

In the moments I don’t feel His peace, I lean on His handbook (the Bible) He gave us for wisdom, direction, and encouragement.

When I let Him fight my battles, my whole attitude and outlook on life changes. There’s hope, not despair. Love, not hate. Joy, not sorrow. Peace, not worry. Patience, not anxiety. Kindness, not meanness. Faithfulness, not unfaithfulness. Gentleness, not hardness. Having self-control, not feeling powerlessness.

It’s about a relationship, not just faith, but a true relationship. It’s letting Him be my confidant.

He gives us purpose for our pain. Those hard things we go through in life, when we allow them to, will strengthen our character, not leaving us feeling weak.

My goodness, if we can’t cling to hope, then what can we cling to?

One of my darkest moments in life has also turned out to be one of my most peace filled moments. I remember like it was yesterday.

I had been “living” in the hospital with Sam for almost three months. I woke up at something o’clock in the morning to the lights flipping on, and swift feet tapping hard on the floor. Before I could even react, the nurse was pushing the code blue button.

I had already experienced this two times before, with the second being less than twent-four hours prior. I jumped out of bed, threw on my flip flops, pushed back the curtain, and quickly stepped out of his room, knowing in a flash, there would be a flood of highly trained people rushing into Sam’s room.

I sat on a chair outside his room feeling numb, praying inside my head and thinking why is this happening again. I remember a nurse whispering to another nurse, “She doesn’t need to hear this.” They gently lead me outside the double doors of the unit and sat with me on the vinyl hospital couch in a small waiting area.

To this day, I couldn’t tell you what they were protecting me from because I didn’t hear a thing. It was as if everything around me fell completely silent. I remember the nurse who sat with me, hugged me, and told me, “Seconds feel like minutes, and minutes feel like hours.” She could not have been more accurate. I also remember begging God to keep my son alive, and telling Him in the same breath, no matter what happens, I will still serve you, but please, please keep my son alive.

The next thing I knew they were flying around the corner through the double doors with Sam, several people around his bed, and bagging him at the same time. I know I followed still praying he would be okay.

I would find out later, Sam had over ten minutes of chest compressions that night.

The craziest thing about that short story, is I still remember, I had this overwhelming peace come over me, even though I didn’t know the outcome.

I guess what I’m trying to say is, I do know how I do it. I believe in a God whose plans are good for me, even when I can’t see. I know my God is with me in the deepest valley and on the highest mountaintop.

Maybe next time I get asked the question, I can answer honestly. Boy am I thankful for His grace, because I think I already know what my answer will be.

Sam Update

It’s been a while since I’ve shared the latest on Sam. No news is good news, right? Pretty much.

It may also have something to do with distance learning, which kicked my behind. I am very glad school is out for the summer in our house. There may have been more yelling matches and apologies needed than I am proud to admit.

Sam was also able to do distance learning, which was the highlight of our days to watch. His face would light up as soon as the camera started. He thinks it’s pretty great to watch himself, and loved seeing his teacher, paras, and classmates. Our hearts melted every time.

Sam’s teacher, therapists, and paras had an end of the year virtual graduation for each child individually. His teacher dropped off a package about a week prior and had asked us to wait to open it until the graduation. Everyone talked about all the things they loved about Sam, he opened his gift and it ended with a video of pictures of Sam throughout the school year. The tears were literally streaming down my face.

This kid who isn’t suppose to be here…absolutely thriving.

Besides a few bumps, Sam has been very healthy and continues to put smiles on everyone’s faces.

As you know, I like to pull the perks in crummy situations. Most of us could agree being stuck at home wasn’t what we would choose, but there was good that came of it for us.

When Sam has just one appointment, it’s usually at least a four hour ordeal if not more. We try our best to group some appointments together in one day for less trips overall.

While quarantined, we were able to schedule Sam’s appointments virtually, which has been a huge blessing for us. An hour versus four or more out of your day is much better if you ask me and Sam is a very busy guy when it comes to doctor appointments.

One virtual appointment did lead Sam to needing an ultrasound in the near future. Unfortunately, it’s looking likely there was a complication of the surgery he had last fall, which may lead him to another surgery. Praying against yet another surgery for this guy.

Sam’s ophthalmologist wanted to see him in the clinic before his normal six month check up. Since January, he’s been closing his right eye when he is focusing on something. We thought maybe his nearsightedness had gotten worse. We were wrong. I’m not gonna lie, the thought of Sam having glasses made me a little excited. You can’t tell me, he wouldn’t be adorable. Am I right?!

The reason Sam has been closing his right eye is because his lazy eye has gotten worse. For right now, he has to wear a patch alternating eyes for an hour a day. Sam’s nurse and I practically laughed when we walked out of the clinic. There no way he’s going to tolerate that! Wrong again!

He’s been a rock star at wearing his patch. Coincidentally, his buddy next door has to wear a patch too. This definitely helps! And they couldn’t be any cuter.

Sam and Declan
We are the patch buddies.

Sam was finally able to get a haircut! We are always amazed at how fast his hair grows. I’ve lost track of how many haircuts he’s had. We are thankful we have someone who comes to our house to cut his hair.

Right now, Sam’s focus are his GI issues, which have always been a work in progress for him. The latest thing we’ve tried has been working successfully for almost a week. We’re praying this stays that way. 

Cincinnati…

Obviously with Covid, we had to put the brakes on our trips, which is not such a bad thing. Yes, we want to get rid of Sam’s trach and it holds us back from things, but overall he has a good quality of life so pumping the brakes is okay. More importantly, Sam has been healthy the past few months and we are grateful for that.

We received a phone call about three weeks ago from Cincinnati, they will be calling in June or July to schedule Sam’s next surgery. My guess is our next big trip will be in the fall.

That’s all for now folks!

Thanks for staying Sam Strong even in the midst of all the chaos in our world.