Curve Balls…

…are a constant when it comes to Sam.

We are now less than two weeks away from surgery.

He’s been having some rough days off and on. His docs had put him on all the stuff a few days ago as a precautionary until surgery. Usually the stuff kicks in fast.

Tonight got tough.

After a phone call, his pulmonologist wanted us to bring him in. No, he’s fine. He’s been much more sick than this and we’ve kept him home. “Do you think he needs a dilation?”, she asked. “Yeah, that’s what I’m starting to think.”, I responded. She ends our conversation with, “I’m sorry.”

She knows. She knows what Sam’s been through. She knows what we’ve been through. She’s knows it better than most. She knows it’s not easy to pack him up and bring him in. She knows he’s likely okay to stay home.

She’s right though. She also knows if he’s inpatient, it will be A LOT easier and faster to get him into the operating room.

She knows his surgery got canceled a few weeks ago. She knows his surgery is rescheduled in less than two weeks.

She called me back before we left our house. “I talked to Dr. Surgeon and Dr. Gastroenterologist. [They both have names, but I like to be respectful of their privacy.] They said between the two of them, they will get Sam on the OR schedule in the morning.”

We are now sitting in the Emergency Room, waiting for a room upstairs. Waiting. Waiting. Waiting. Waiting. Waiting. When you are in the hospital, there is so much waiting. Covid makes the wait even longer.

The lV is in without too much effort. Whew. Sam isn’t always the easiest poke. Although if you could hear him cry, they would have probably heard him a few rooms down. It’s sure a lot more heart braking to watch your child scream, but no sound comes out. It’s something you never really get use to.

Maybe I’ll get some sleep tonight. I just need a little.

He’s sleeping now. That’s all that matters.

Now I know I’m not the only one praying for my family and my sweet little boy.

Tomorrow I will have good news for you.

Humor for the Day

In our house we have playfully deemed my husband the principal at our school. When my kids start driving me nuts, I let them know I will be making a phone call to the principal. They usually start behaving real quick.

The teacher got a warning from the principal the other day.

This letter came “anonymously” from…

my daughter.

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I did tell the principal he should start video taping my classroom to see what’s really happening.

Happy homeschooling!

Hand in there, the school year is almost over!

Homeschool, What?!

MANY of us are parents or caregivers who have turned into teachers overnight. Who would have thunk?! 

Change is not easy, but with a little elbow grease and most importantly an overall good attitude, you can do it.

Yes, at the beginning, we have to work out the kinks and navigate through the unknowns, but the more we focus on what we are going to do with the change and not dwell on what has changed, the more successful and happy we will be.

Like I’ve said before, technology can be a blessing and a cursing. Right now, in the world of education and beyond, it has been an absolute blessing, no doubt.

I don’t know about where you live, but the teachers and educational staff in our community have really pulled together and made the best of a tough situation. And we are the largest school district in our state.

Many teachers are working hard if not harder then they did before to do their best to keep up with our children’s education. Let this time remind you of how hard teachers work to educate our children. This situation in not ideal and they would rather be in the classroom with our kids.

Hopefully you have settled into somewhat of a routine. Is it going to be the same as if kids were in school? No.

I don’t know about you, but I’ve caught myself having yelling matches with my kids and their schoolwork. It’s funny, because I was a teacher, so you would think I have more in my tool belt when guiding them with their schoolwork, but all that education and patience seems to go out the door when it comes to your own kids. Hahaha!

I’m so grateful I don’t have to plan the curriculum!

This is tough, but let me tell you, there are much tougher things.

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We can fight the change or we can embrace it. Knowing what it’s like to live in a new normal, if you can embrace the change, you will stay mentally strong.

While we are quarantined at home, and things are out of the norm, someone else is grieving the loss of their daughter/son to Suicide, or just found out they had cancer, or have been waiting in the hospital for over a year with their child for a bone marrow transplant, or the list goes on and on and on and on. It can always be worse.

Let’s not forget there are many out there who have been through or are currently going through far harder things than suddenly becoming their child’s teacher.

Teachers are working very hard to keep things as normal as possible for our kids. Many have kids of their own at home, while also working full-time.

I’m not saying we can’t have a bad day, here and there, but let’s refuse to let COVID-19 steal our joy and be thankful for what do have!

Let’s be grateful for our educators who are working hard to make the best of the cards they’ve been dealt.

Hang in there.

This too shall pass. 

Singing in the Storm

With all the craziness happening in the world, I thought it would be a good idea to bring out the perks because that is what I do when things get tough and let me tell you, we know tough times. Any parent who’s had to watch their child fight for their life knows tough times.

Thinking back, there are countless times I begged God to keep our son alive, promising Him, no matter the outcome I would still serve Him. I’ve witnessed my son go into cardiac arrest four times needing more than ten minutes of chest compressions on one occasion. In his short life he’s had several major surgeries and has been sedated well over fifty times. His life depends on a breathing tube and one hundred percent of his nutrition is through a feeding tube. We’ve gone from a two income family to one. And that’s only piece of the story.

While everyone seems to be panicking, I can honestly say, besides seeing empty shelves at the grocery store, and we’re hunkering down more than normal, our lives have not changed all that much. We are use to being “stuck” at home. When it comes to Sam, we don’t go into crowded areas very often and when we do, we are vigorously washing hands and using hand sanitizer. I go to bed at night praying God will protect Sam from any germs he came in contact with.

In our normal, everyday life, we don’t ignore what’s tough, but we don’t dwell on it either. We do our best and know there is so much we don’t have control over.

We know one tiny germ can be life threatening for Sam. Everyday we get with our sweet little boy is a blessing we know cannot be taken for granted.

Sam falls in the high risk category for COVID-19, just like he does the flu. Before everything was shutting down, he had been pulled from school because influenza had been going around. After so many confirmed cases of influenza, Sam’s doctors know the risks outweigh the benefits of school for him.

The Coronavirus has changed life for almost everyone in some way shape or form. If you have anyone in your life who is over the age of sixty-five, they fall into the high risk category for COVID-19.

That being said, for those of you who might be letting fear creep in, with what’s going on, here are some ways we keep normalcy in our lives.

  • Pull out the perks. Yeah, we were pretty bummed to find out Sam’s trach will not be coming out anytime soon, if ever, but that trach is what has given him life. Sometimes it’s hard to pull out the perks, but everyday, try to pull out at least one perk.
  • Be responsible and do your part by following the Center for Disease Control and Prevention (CDC), where you will find the most accurate information, but don’t let it consume you. If you watch the news a lot and your feeling anxious about what’s happening, take a break from it for a few days. You can follow what’s happening without watching the news by going to the CDC website. I’m not on social media, but from what I’ve heard, you might think about taking a break from that for a bit too.
  • Laugh even when it’s hard.
  • Take one day at a time. I’ve lost track of how many times our days have taken a completely different path than what we had planned since Sam. We make our plans, knowing they could be altered. Keeping this mindset has helped us be adaptable and flexible with whatever changes need to be made.
  • Call someone you know will lift your spirits. It’s important to note, I didn’t say text.
  • Let go of what and who you cannot control, which is pretty much everything, and for sure everyone, except for you and your actions. I’ve learned as soon as I start to worry about something, I try control the situation, which I generally regret doing, and it often seems to make things worse.
  • Sing in the storm. For those of you who have followed Sam’s story, you have probably learned my faith has played a vital role in keeping a smile on my face. Along with my faith, comes the music I listen to that sometimes bring on heavy tears that needed to fall and then a hope that gets restored. Sing in the storm, knowing the storm might bring wreckage, but the sun will eventually come out. Raise a Hallelujah

I pray God will give you His peace that passes all understanding as you navigate through the unknown. I pray you can focus on what’s good, and be mindful of, but not dwell on the bad. I pray you are doing your part to slow the spread without panicking and letting go of what and who you can’t control.

You’ve got this!

To those of you who believe, I leave you with a profound statement I heard about two years ago.

You can worry or trust God, but you can’t do both.

FAITH OVER FEAR!

COVID-19 AKA Coronavirus

About two weeks ago, I did my usual run to the pharmacy to pick up Sam’s meds. We had been running low on hand sanitizer, which is a staple in our house so I figured I would pick some up.

I ventured over to the aisle where I knew I would find the hand sanitizer. As I turned the corner, I noticed empty shelves. You guessed it. There was absolutely no hand sanitizer. That’s silly, I thought to myself, I guess I’ll get it at Walmart. The shelves were completely empty there too. For real?! This can’t be a result of people freaking out about the Coronavirus?! I’ll try Amazon. Nope. I’m not paying that kind of money for a six fluid ounce bottle!! 

This is a true story. It’s hard for me to understand. As you are probably aware, there are many other things flying off the shelves besides hand sanitizer. Being precautionary is one thing, but wiping out stores tells me fear and panic are involved.

We are now on our last bottle of hand sanitizer and I still haven’t been able to find any. I’m not going to bend over backwards to find it and I’m not going to pay a pretty penny for it. We have kind people in our life who know how important hand sanitizer is in our house and have bought some for us.

People are living in fear. Fear of what might or could or might not happen. Being precautionary is one thing, panic is another.

We have a medically fragile son. How many are feeling and reacting to the Coronavirus, we could feel and react the same way each and every day. This is the reality of anyone who has a medically complex child. Every single day, germs are very BIG deal in our house.

We choose not to live in fear.  We do our best, but that’s all we have. We take precautions, but don’t let the weight of what the germs “could” do to Sam consume our minds. We continue to wash our hands and say our prayers because Jesus and germs are everywhere. I try focus more on the Jesus side of things because I believe His plan is bigger. 

Worry is a thief of joy. The more you dwell on your worry, the more and more tangible it becomes. A worry can’t change anything. It is just that, a worry. It’s our mind dwelling on the maybe. I have two things in my life right now that are legit things I could worry about. If I sat and thought about, continually talked about, read about, and listen to all the terrible things that “could” happen, I would likely drive myself nuts. We have to choose to make technology a blessing and not a cursing because unfortunately if we aren’t careful, fear and panic can easily set in.

Try not to let the fear of the Coronavirus consume you. Keep living the life you are hopefully already doing by good hand washing and staying home if you are sick.

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