We Fight For All Of Our Children

We're back to that resilience thing I wrote about quite some time ago. Click here to read how I feel about resilience. I know it could be SO much worse, and once in a while when things are harder, my thoughts go to, "but God", don’t we have enough on our plate? Why does it seem when life throws you a curve ball, more keep coming?

If you have more than one child, my guess is you love each of them equally, and you likely express your love differently based on their needs. Each of our kids are special and unique. No one else in the world can offer what he or she can. I believe this with all of my heart. We do our very best to give each of our children what we think they need from us emotionally, socially, physically, mentally, academically, etc. You get the point. We do our best to raise virtuous adults.

Sometimes circumstances and/or nature gets in the way.

We do very best, and that is all we have. At times, our very best, doesn’t seem or feel like enough, and during a trauma there is only so much we can do, even if we want to give more, circumstances can stop us. We carry the weight of our children’s bad choices on our shoulders whether they are six or twenty-one. 

Sometimes, no matter what we do or say, I believe nature will take over nurture and our children can take a destructive path. It comes to a point where we have to set boundaries, and they have to figure it out on their own.

For parents and loved ones, watching the destruction, makes for heartbreak, anger, pain, frustration, sadness, despair, etc. It’s a road no parent foresees for their child. We can try all the things the experts say to do, but those things don’t always work. It’s a road you think can’t happen to you, because you are good parents.

We fight for all of our children. We love each of them equally and want them to have happy, successful lives. They grow up and make decisions of their own. How we set our boundaries doesn’t mean we love them any less. We can set boundaries and love our kids at the same time. Boundaries are an important part to healthy mental health and love for our children.

I have to admit, most of us in this family have handled adversity like rock stars. Daily, I hope, pray, and believe, someday I can tell this part of our story. It WILL BE a story that ends with restoration, meaning better than it was before.

We fight for all of our children and sometimes that means letting go of what we cannot fix or change. At the end of the day, there is very little we have control over and we have to rely on hope. Hope that the old will be made new. Hope that faith will prevail over our fears. Hope that restoration will come.

Miracles Still Happen

We went into Sam’s procedure with high hopes and low expectations. After what happened in Cincinnati, the odds of the surgery working were not in Sam’s favor. Here’s my analogy. Let’s say you get five sutures (stitches) in your airway. Within minutes of waking up after surgery, you start throwing up every fifteen minutes. The pressure from throwing up is most likely going break open all of the fresh sutures that were just placed. It makes sense that everyone had very low expectations, that few, if any sutures would stick.

When Sam’s ENT came to talk to us before the procedure, he told us he spoke with the ENT who did the surgery in Cincinnati and heard what happened. I told him, my hope and dream is that at least two sutures stuck. High hopes, low expectations. He responded, ”We’ll see.”

Feeling a little loopy from the Versed, and although more calm, still not excited for what's about to happen.

We’re getting close to seventy times I’ve had to watch my little boy get put under sedation. At this point, we have a pretty solid routine. We see all the staff who need to meet with Sam and I before surgery, they get vitals, we go over ALL his meds and records with the nurse for the umpteenth time, I make sure the right labs will be drawn so Sam doesn't have to get poked more, sign all the paperwork, make sure Sam gets Versed, keep snuggling my poor, very stressed out little boy, and then give him one last kiss before they roll him back to the OR. I take a deep breath, say a short prayer, and the nurse (or Sean, depending on who's with me) and I walk to the cafeteria to get something to eat.

We go back to the waiting room, eat, and depending the the procedure, wait. This time, I look at Sam's nurse and start praying. Let's note, I am not always good about praying before meals. "Lord, bless our food and I pray two of the sutures will stick. It would be really great if three of them stick. And if your having a really good day, please make all five of them stick." Sam's nurse responded, "Amen." We started eating our food.

I think I forgot Sam's previous procedures usually have two to three doctors doing something or a surgery that takes longer, because I had only two bites and Sam's doctor came into the room. He said, "Well...two of the sutures stuck. And actually, three of the sutures stuck. And actually, all five sutures are still in tact." Instant tears from me and Sam's nurse. I had the same feeling in my heart, mind, and soul on the day the doctors told me they were able to attach Sam's esophagus. Pure shock. An absolute true miracle. Thank you Jesus. Sam's ENT had already called the ENT in Cincinnati to let him know, and his response was, "Wow." Enough said.

He has no idea the greatest news we just got!!!!!

Sam always has to throw a curve ball somehow. We were cleared to leave at about 12:30pm. This would have been record timing for a procedure with Sam. We started packing things up and the nurse came into the room. "Sorry, I can't let you leave, his potassium is 8.3." What does that mean?! Apparently, that is heart attack level. If I'm being honest, I had zero worry. Sam. They checked it again right away. It did go down to 7.4, but that is still very high. Lab came to draw blood from his other arm. Even after being put under, it still took three of us to hold him still. Poor buddy. The nurse laughed at me when I put the call light on to show her the new results on my phone. "4.1", I told her, "We can leave, right!?" "Yes, let's get you guys out of here!", she said.

We have been waiting for this since Sam was two months old. He had the surgery done twice here and it failed, likely because of his retching.

We really needed a big win. Thank you Lord.

Now what?

This is the first MAJOR step in being able to remove Sam's trach (breathing tube). LIFE CHANGING. Sam still has A LOT to overcome, but this surgery is a HUGE win. He will have a swallow study and see his GI (gastroenterology), ENT, and pulmonology. And then hopefully, he can start feeding therapy!!!!!!

Thank you for your continued prayers. I truly believe they have brought Sam to where he is today.

SAM STRONG

FAITH OVER FEAR

Psalm 27:14 says, "Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!" I find so much peace in this. When I wait on Him, it's not a waste of time. It might be incredibly hard, but it's not a waste of time. The more I wait on Him and not me or others, the more He seems strengthen my heart.

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.