My sweet uncle went home to be with the Lord. Thank you for your prayers. Pray now for my aunt, cousins, and their families to feel God’s peace through all their stages of grief.
For those of you who believe in the the power of prayer, please pray for my uncle. He is currently in the hospital with Covid. We are praying they can get his oxygen levels up. Please pray for God’s peace that passes all understanding for his family during this time of uncertainty for them.
You are good and we thank you for that. We ask for you to give your breath of life into Uncle Jerry right now. We pray his oxygen levels will go up and he will be able to go home soon. Give his family your peace that passes all understanding while they wait.
In Jesus Name,
April was not so fun in this house, but thankfully we have all recovered. Most importantly to us, Sam is okay and we kept him out of the hospital.
It started with me not feeling too great. I already tested negative for Covid earlier in the week because we knew we had been exposed. When I started feeling cruddy, I tested again. Negative. Whew.
I had several rough days. Thank you Lord for home care nursing! On a normal day with Sam, we are incredibly thankful for our home care nurses. When he gets sick, even more grateful. Add me getting sick on top of all that. Home care nurses. No words.
Sam tested negative too, but then started getting sick a few days after I was feeling cruddy. Oh shoot. He was really sick for a good six days. He was on oxygen for four days and all the home therapies we could do that aren’t legal in most homes. We did get very close to having to bring him to the hospital, but we were able to keep him home. Again, home care nurses. Priceless.
About a week later, after I had started feeling better, I couldn’t smell or taste anything. Wait a minute!?!? I went and tested again. As I suspected…positive for Covid. What?! Those of you who have experienced these symptoms of Covid can understand how annoying it is! I’m happy to say it didn’t last too long.
Sam’s pulmonologist sent a nurse to the house to test Sam. Positive. Bummer. There was a lot of praying on my part, that he would be okay and we would be able to keep him out of the hospital.
Sean tested positive. The next day he started feeling cruddy. He was all excited to be able to get some things done around the house, but he was down for the count for almost ten days.
Will and Abby both tested negative, but had to do distance learning until their quarantine was up. Have I ever mentioned how much I love distance learning? Oh yeah, cause I don’t, not even a little. Because Abby ended up testing positive, she was able to go back to school a few days before Will. I’ve stopped trying to make sense of all the Covid rules.
During all this hoopla, I found out my grandma passed away. She was ninety-five, went peacefully, and although she was dealt a hard hand of cards in life, she lived a good life. Her legacy? She loved Jesus, taught us to pray, read our Bible, and have a relationship with Jesus.
Towards the end of her life, she could barely speak. I know she recognized us when my sister and I saw her for the first time in a long time. She clearly said two of my four children’s names. It wasn’t by chance she squeezed the two names out I have fought for on my knees in prayer countless times the past four plus years. I believe it was her heart that said those two names that day.
We didn’t get to go to her funeral, but this is where technology is a blessing. Thank you to my brother-in-law who held his phone up the entire funeral service so I could “be there”.
While Sam was sick, he was scheduled to have an upper endoscopy to check on his esophagus. As we suspected, surgery needed to be rescheduled.
To recap, Sam’s last dilation was in January. His surgeon told us, when Sam can go for six months without a dilation, he’ll give us the “a-okay” to go to Cincinnati.
Tomorrow, Sam will have his rescheduled procedure. It’s been almost exactly four months since Sam’s last dilation. We are hoping and praying, he will not need to be dilated.
Faith Over Fear.
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.
…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.
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…
I did tell the principal he should start video taping my classroom to see what’s really happening.
Hand in there, the school year is almost over!
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.
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.
You can always sing in the storm.
You can always figuratively put one foot in front of the other.
They are both a choice.
Will you choose both today?
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.
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.
FAITH OVER FEAR!
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, 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.
Worry implies that we don’t quite trust that God is big enough, powerful enough, or loving enough to take care of what’s happening in our lives.
– Francis Chan