Thank You!

A BIG thank you to those who donated to the Ronald McDonald House Charities-Upper Midwest! Our team, Sam Strong, raised $1,805!!

Click on the logo below to read more about this awesome charity.

Ronald McDonald House Charities, Upper Midwest logo

I promise updates are coming soon on Mr. Superman Sam. Summer is flying by! For the most part, no news is good news!

No News is Good News

Sam’s dilation went well. His esophagus was VERY strictured (narrow), almost shut again. The dilation was definitely needed.

As in the past, as soon as Sam gets dilated, his spitting and retching almost instantaneously stop. These are usually the tell tale signs he needs a dilation. Unfortunately, there isn’t anything else that can be done, except put him under anesthesia, and stretch his esophagus.

As of now, surgery will wait to hear from us. IF Sam gets symptoms, they will put him on the schedule as needed. With Sam’s thirty-five plus esophageal dilations, we’ve only been wrong once. There are many, but one great thing about Sam’s care team, is they trust our judgment. They listen, really listen to us. I call the surgery scheduler, who I’m on a first name basis with, and they get him on the surgery schedule ASAP.

We are going to believe Sam won’t need as many dilations as the first time, and even better, he won’t need anymore.

I’ll leave you with a moment from a day in the life of Superman Sam. You just can’t make this stuff up!

We were sitting in “school” with Sam. When Sam does distance learning, we prop his iPad on the kitchen island and he sits on one of the bar stools. I usually stand next to him. His nurse will stand or sit on the stool on the other side of him. All of the sudden, I thought I noticed something about Sam’s mouth. Does he have a missing tooth?!?! With Sam’s camera on, I didn’t want to disrupt school.

As soon as school was over, Sam’s nurse and I pried open his mouth. Yes, we had to do this. It’s the only way to be able to see inside his mouth. Yep, I saw it right the first time, a bottom, front, tooth, MIA! What?!?! Where did it go?!?! Did he swallow it?!?! Was it in his bedroom somewhere?!?! How did I not know he had a loose tooth?!?!

Mom guilt, setting in. And then, that good ole self talk. Stop it!! You have a lot more things to keep track of in the world of Sam, then a loose tooth!!! It’s not a big deal!! He’s clearly okay!!

Mom guilt. Raise your hand if you’re a mom and have had mom guilt recently. Okay, I’m feeling better already. It’s so silly. Why do we do this to ourselves? Because, we’re human.

Give yourself grace mama. To me, giving yourself grace is acknowledging the situation, doing what you can to rectify it, then moving on, and letting it go. It’s knowing, we are not perfect.

From the mama with typical children, to the mama with special needs children, to the mama of a prodigal, and everything in between, give yourself grace, because we all need it, every single day.

Sam Strong!

Faith Over Fear!

Dilation

We out!
I can’t wait to be home!

Sam was happy, but also nervous at times, when we left the hospital. He walked out with excitement, but would stop here and there, and clench my leg with with fear. I can’t imagine what was going through his head. That’s the thing about having a nonverbal child. I can read his emotions, but I also know there is so much more attached to those emotions and so much going on in that little brain of his. I would love to hear it all. Someday.

Overall, Sam has been doing well. His nights have been rough, but his days have been mostly good. Home care nurses, priceless. Both him and I are definitely happy to be home.

You couldn’t put a price tag on when Sam saw his Abby for the first time, in over six weeks. Let me remind you, Abby wanted nothing to do with having a little sister or brother five years ago. The bond they have now, is priceless.

Ahhh, home sweet home. My Elmo desk, and my spoons and forks.

Most of the time he’s happy with his spoons or forks at his favorite spot in the house, his Elmo desk. Or dancing in the living room to his toddler music.

Sam will have another esophageal dilation tomorrow. Unfortunately, for Sam, this is a routine procedure. We know the drill. I’m not saying the drill is easy, but we definitely have it down to a science. If you’ve ever had a child have surgery and remember the process, it’s quite the ordeal. When you’re asked to be on a committee to make the patient/family experience better, pre and post op (before and after surgery), you must be a be veteran. Yep, true story.

Pray everything goes well tomorrow. Pray for Sam’s surgeon, nursing staff, and anesthesiologist.

As always, Sam Strong and Faith Over Fear!

Happy Thanksgiving! Remember, you can always find something to be thankful for. Focus on what’s good in your life. I promise, there’s something.

We Out!

We are bustin’ this joint today!!!!! Forty-five unexpected days later and we get to go home!!!! I am overwhelmed with excitement. I cannot wait to see Sam’s reaction when we walk though the door.

A friend shared this with me today. God didn’t promise a storm free life, but he promises the storms won’t destroy us. I cannot agree more.

Thank you, thank you, thank you for your support and prayers!

Sam Strong!

Faith Over Fear!

I’m ready to bust this joint!

Donate to RMH Today!

If you’re able, don’t forget to make a last minute donation to Ronald McDonald House Charities today!

Last year our team won the Largest Team Award. Way to go Team Sam Strong! Maybe this year, we can win the award for Most Last Minute Donations! It’s not actually a thing, but it sounds good. 😁

Click here to donate in honor of Team Sam Strong!

Click here to read my latest post on what RMH means to me.

Have a happy and safe Halloween!

Ronald McDonald House Charities (RMH)

A home-away-from-home that supports keeping families together and reduces stress during a child’s serious illness.

Sam’s PICC line took an hour to an hour and half to put in. They highly suggest parents are not in the room for this. Good suggestion. I don’t leave his room much. It’s a lot harder to leave now that he’s older. I know I didn’t leave a lot when we were “living” here, but I felt more comfortable leaving back then. Thankfully, this place is not home to him anymore. Now he gets so afraid, as he should. Most of these people, although great, are strangers to him.

I decided to stroll down to the third floor, where RMH is. I walk through “the house” and start recollecting. I notice some of the changes. I see it’s a beautiful Minnesota fall day so I step out onto the patio. I’m sure my body is screaming for vitamin D at this point.

As I sit on this small patio (picture above is the view from the Minneapolis RMH Campus), the memories of this place come flooding back to me. The sounds of the city going on with its day. Once in a while, a helicopter blares above or the sirens of an ambulance race by. I close my eyes and let the warm sun beat on my face. It feels good. The memories of the beginning of Sam’s life imbedded in my heart, good and bad, begin vividly racing in my mind.

There are so many memories, and some create an extra pang in my heart. I am beyond grateful for this charity. It’s one of those things, you don’t really understand the impact of what they do, until you or someone close to you gets thrown into a situation they never thought possible.

During our extended stay, RMH was a game changer for me. For over seven months, I had a free home cooked meal, a bed when I asked for one, a friendly smile to greet me each time I walked in, a place to get away for a moment without the feeling of being in a hospital, and a nice, warm shower, when it was often well overdue.

As I rarely left the hospital, having this, home away from home, only a few steps away from Sam, made an incredibly difficult time easier, both financially and emotionally.

Some of my most emotional moments were spent at RMH, like sitting, in the warm sun, on the balcony of RMH. Or when I saw my mom, dad, and sister for the first time after they had jumped in their car from Florida on a Thursday afternoon, and made it to Minnesota by a Saturday evening. Grandpa Larry cannot deny the speeding involved.

Here a few more moments from RMH, that will forever be in my heart. 

Author uploaded image

Just like any typical kid during a Minnesota summer, my friend’s two sons wanted to have a lemonade stand. At this point, Sam had been in the hospital for about a month. Unbeknownst to her, the two boys had other plans. Their intentions didn’t entail earning money for themselves. The stories they heard from their mom about how RMH had made a major impact on our family, struck a cord in their little hearts. The fine print on the sign they made reads, “all Money goes to ronald mcDonald house!”. They raised $55!! Precious.

One morning I was sitting in RMH beginning a new journal entry for Sam’s CaringBridge. I ventured to the microwave to warm-up my coffee. I was already a bit emotional. As I was waiting at the microwave, I read the back of an RMH volunteer’s shirt.

“This is the house that opens its arms, that feels like home, that embraces the children, that comforts the parents. This is the house where families meet, to eat and sleep, to find their strengths and dry their tears, to look forward with hope to better years.”

Ronald McDonald House Charities

I proceeded to tell the RMH volunteer how true the back of her shirt was. I couldn’t stop the tears from flowing. She didn’t say anything, just gave me a hug. I tried to assure her, my tears, were happy ones, because I was going to take my son home soon. 

I never understood the significance of RMH until life threw a curveball at our family. We will be forever grateful for the impact RMH was and is to us today. Since the beginning of Sam’s life, RMH has been a saving grace for me.

Giving to this charity can be as easy as saving your pop tabs. Beer tabs work too. ; ) Each year, the collection we turn in to RMH gets bigger and bigger. People collect them and give them to me. Once a year, I bring the stash to RMH. They make almost $20,000 a year in donations from collecting pop tabs! It’s such a simple thing to do. If you want to start collecting, I would be happy to take the stash off your hands!

Ever since Sam has started his journey here, we have participated in the RMH Family Walk. This year the walk is virtual TOMORROW October 31st! Covid, ugh. Although, we can’t walk, I was able to set up a team last minute and would love your support! I planned to set this up a while ago, but I have been a little preoccupied. 🤣 Please consider donating to this charity that helps families during unimaginable times.

Click here to donate to our team, Sam Strong!

Thank you in advance for your donations!

Sam Strong!

Faith Over Fear!

The Plan

Sam will go down to the OR (operating room) with his surgeon and GI (tummy) doctor on Thursday to hopefully figure out what’s going on.

Until then, we do our best to keep him comfortable. Thank you Lord for Pain and Palliative Care.

Sam Strong!

Faith Over Fear!

The Power of Prayer

Not too much has changed and Sam’s still miserable, but his heart rate and blood pressure have come down a little! Thank you for your prayers!

We are at a standstill until surgery comes up with a plan. Patiently, we wait.

Until then, we’ll take all the prayers!