The Abbreviated Version

It isn’t until I see Sam’s story on paper or I’m asked to share it at a volunteer event, I think, Holy Smokes!!

I shared my “What Will You Remember” post with one of Sam’s nurses he had while “living” in the hospital.

Her: Oh my gosh!!!! We were out on a boat today and I literally was thinking about Sam! I honestly CAN NOT believe it was 4 years ago!

Her: He changed my life!

Her: That post made me bawl 😭😭😭 so perfectly said! You have all been through SO much.

Me: I don’t even realize it until I write about it!

Her: And that is truly the abbreviated version. Insane.

That hit me hard. The abbreviated version. Wow. So true. Crazy. 

Here’s the thing.

I don’t want discount Sam’s story and I know it’s significant. I know it’s a big one.

I also know so many have been through so much more and it could be so much worse.

Side note, never tell anyone else when they’re going through a rough patch, it could be worse. That’s a whole other topic.

It’s completely different when it’s coming from the person experiencing the tough time. I believe when your having a “poor me” moment, because we all have them at times, acknowledging others are going through or have been through worse, is not a bad thing.

Sometimes it’s not even a “poor me” moment. It’s truly a crisis situation.

Either way, it’s important we don’t stay at the pity party for too long. Pity turns into wallow and self loathing. Then we’re in trouble. When we’re here, it’s a lot harder to be there for the other people in our lives because we’re focused solely on our self.

Having a moment is okay, but staying there isn’t good for anyone.

For me, acknowledging “it could be worse“ helps me see the bigger picture and focus on the things I am grateful for. It quickly gets me out of the party no one wants to be at for very long.

It’s that self talk that says…

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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. 

Best Christmas E…v…er!

Well, I’m overwhelmed again and it’s not because things aren’t going well. Again, it’s the opposite.

We were shocked and surprised when our friends showed up at our door the week before Christmas with gifts…so…many…gifts. I tried to ask what was going on and everyone just ignored me. Then, strangers started to follow with even more wrapped presents! The presents kept coming and everyone kept ignoring me! After the gifts were literally overflowing in our living room one of the strangers with the sweetest, kindest smile began to talk. I don’t remember much of what she said. I remember hearing, We are here with the Vikings and the Best Christmas Ever and your friends nominated you...

I don’t know if I was sobbing before or after that, I just know the tears were flowing off and on A LOT that night.

The sweet gal from the Vikings had our friend read what she wrote to nominate our family for the Best Christmas Ever. You know when the tears are falling so fast down your cheeks, you can barely catch the next one? Yeah, that was me during that little reading. I just kept thinking, we do not deserve all of this. Yeah, I still feel that way, especially after all we’ve been blessed with in the last few months.

We were given SO MUCH stuff, from a trip for our family to anywhere warm to Sesame Street pjs for Sam. Things we could easily do without, but those things put some pretty big, heart felt smiles on my kids faces. Okay, okay ours too. I got a KitchenAid mixer, something I’ve always wanted, but either couldn’t or just didn’t feel right about buying in the past.

We have been beyond blessed by our family, friends, and strangers the past three years, but this year has been over the top.

Honestly, I’m still in shock and it all feels so undeserving. I get a lump in my throat each time I think about the whole thing. Why us?

I guess I tell myself it wasn’t for me, or Sean, or Sam. The Best Christmas Ever was for Ryan, Will, and Abby. You see, when you have a complex child, everything revolves around that child. If you haven’t seen the movie Wonder, I would highly recommend it. The way it depicts each member of the family with a complex child is spot on. The sister of the boy who is medically complex in the movie says, “August is the Sun. Me and Mom and Dad are the planets orbiting the Sun.” Although she deeply loves her brother, she feels left out sometimes. I could write a book about the mom guilt feelings I have with my other three kids since Sam has been born.

It really is incredible what can happen when people use their pain to help others. Click here to learn more about the Best Christmas Ever and read the story about this amazing dad who decided to pay it forward year after year to families who have been dealt a tough hand at no fault of their own. We were blessed this Christmas because one person tried. And we weren’t the only ones blessed, all that partook were uplifted. We can’t thank all involved enough. Sometimes, thank you doesn’t do justice. At the end of the day, it’s my hope, my kids will see His work in all of this.

Overwhelmed

This past week was incredibly overwhelming and it wasn’t because things were bad. It was the exact opposite.

Our family and friends have had two benefits to raise money for our travel expenses to and from Cincinnati. People we don’t even know donated silent auction items or gave money to our family. Wow. I didn’t know that many people liked us. Lol.

I knew these events were happening, but I kept pretending they wouldn’t come to pass. They did. I even tried to say, “Thank you, but no thank you.” All I could think is, we don’t deserve this. There might be a lot of crud going on in our world, but I continue to be amazed at the good in people, not only now, but the past three years. I still don’t feel like we deserve any of this, but can tell you, a heavy financial weight has been definitely lifted off of our shoulders. Now, we can focus on how we will get Sam to Cincinnati logistically, not financially.

The other day, I made a huge deposit into an account I set up in Sam’s name. I stood there while the bank teller counted the money and fought back tears. I bit my bottom lip, a subconscious thing I do when I am trying to get my mind on something else. When the teller got to the checks, I did my best to wipe the tears away without anyone noticing. This is silly, I told myself, pull yourself together. Per policy, another bank teller came over to double check the checks. It was all over after that. The floodgates came. I literally sobbed like a baby. So embarrassing. My heart was so overwhelmed, I couldn’t control the tears no matter how much I tried. The teller was so sweet, sincerely asking if I was okay. I reassured her, my tears were happy tears.

If you had any part of any of these events, thank you. Our hearts are so overwhelmed with gratitude, we can barely contain it.

Sean and I came home and both agreed, the two days felt like a surgery day, which means complete exhaustion. It felt like the thoughts that linger after your wedding day. Did we acknowledge and thank everyone who came? Oh, no I didn’t even know that person was there?! Off and on, I keep having to stop the tears from coming, but again, they are happy tears.

Especially now, in a world where we are always “busy”, giving your time is a gift that doesn’t go unnoticed by the receiver. In my opinion, time is the greatest gift you can give someone. I know the time and planning that went into each of the two events on behalf of Sam was a lot. Something like that doesn’t just happen. The monetary gifts given to our family the past couple of weeks would not have been made if people did not give their time. At the end of the day, people gave their gift of time and that is worth just as much.

THANK YOU to anyone who helped in any way whether with your time or your financial contribution. Words truly cannot express our gratitude.

We found out our first travel dates to Cincinnati! We will be going at the end of February!

Sam Strong!

Cincinnati here we come!

Why Target?

Target.

I don’t know what it is about Target.

Every time I go to Target alone, I get super emotional. There are moments my body seems to freeze up and time feels as though it is standing still. I walk by the sweet mamas talking to their sweet babies while their cute little legs are dangling out of the cart. My heart is happy for them and hurts at the same time. I think about how grateful I am I was able to take my first three sweet babies to Target. Sam has never been to Target or in any store for that matter. Or I go to the baby food section and the only thing I buy is green beans. I don’t buy anything else because the only thing, besides formula, we pump into Sam’s gj-tube (feeding tube) is green beans. For a moment, I envy the other mamas who are buying other baby food flavors. Stupid, I know. Then I tell myself to buck up and feel grateful for nurses and feeding tubes and life.

Suddenly, it hits me.

I figured it out.

PTSD. Post-traumatic stress disorder.

Yep, kind of weird, I know, but it’s a thing and it can happen to anyone who’s been through a trauma.

When Sam was “living” in the hospital, I basically lived there too. On the rare occasion I did leave, it was to be with my family or quickly pick-up some toiletries. We lived in twelve different rooms in the seven months Sam was there so I learned to live very sparingly. Guess what store I went to on my rare trips out of the hospital? Yep…you guessed it…Target.

I vividly remember standing in the checkout line at the Target closest to the hospital during an extremely grim time for Sam. I felt like I was the scene in a movie. I looked at the person in front of me, behind me, and everywhere around me wondering what their story was. An overarching question constantly on my mind still to this day…“What’s their story?” I remember failing to fight back tears as I stood in line. I quickly wiped away the small tears as I came closer to the checkout. It didn’t help there was a proud daddy with his little boy who couldn’t have been more than a year old in front of me.

It’s crazy how sounds, smells, and/or certain places can bring back vivid moments in your life. Whether they were moments of peace or fear, they were real to you. It’s those moments of fear that seem to hit us the hardest. Fear can wrap around you so tightly, it can almost feel hard to breath. It can happen even if you haven’t experienced a trauma. I’m guessing we have all had moments like this. When you can stand in faith and know fear is a liar, your happiness can’t be taken. That grip of fear slowly releases and a peace that passes all understanding sets in.

Still almost three years later, I have to fight with myself anytime I step foot in a Target alone. Some days there is more fighting than others, but every time I walk out those sliding glass doors, I choose to smile, remind myself, it could be so much worse, and ponder the MANY things I am grateful for.

Grateful

My heart could not be more full. We walked to raise money for a charity who gives families a home-away-from-home when their child is experiencing a serious illness.

Put yourself in these shoes. You’re watching your child fight for his/her life. It doesn’t matter what is it or how they’re fighting. Bottom line…they are fighting to stay alive and it’s the hardest thing you’ve ever done in your life.

During that time, someone comes in and gives you the simple things in life, like a homemade dinner, a hot shower, or a place to step away without feeling like you’re in a hospital. When you’re watching your child fight for their life and you are able to access these things that seem so simple, but really are not, it means the world to you. I speak from experience.

I can’t tell you how grateful I am for the Ronald McDonald House Charities and how thankful I am to be able to give back to them.

Our team, Sam Strong raised $2,285 for the Ronald McDonald House Charities – Upper Midwest! Thank you to all who donated!

2019 RBC Race for the Kids Family Walk
Team Sam Strong
2019 RBC Race for the Kids Family Walk
Award for the largest team! Go team Sam Strong!

We also won an award for being the largest team! I was overwhelmed with gratitude. Winning this award is evidence of the amazing support system we have. I feel so blessed. Thank you to everyone who gave up a their Saturday and endured the humidity for Sam, our family, and this incredible organization.

Happy Birthday!!!

Happy 3rd birthday to my sweet, miracle boy! Many didn’t think you would make it home. Although you are still very medical, you are thriving. Hospital staff continue to be amazed at your progress. Thank you for the joy you bring into my life and so many others. Thank you for reminding me daily how precious life is. Thank you for being so strong for all your little body has endured. Thank you for inspiring me to do better every day.

To the medical professionals who didn’t think Sam would make it home from the hospital. Thank you for doing everything you could to keep him alive. Thank you for losing sleep over my little boy. Thank you for talking with us, not at us. Thank you for looking at Sam as an individual and not just a little boy with Down Syndrome.

To the family and friends who continue to stick by us. We couldn’t do this journey without you. Your prayers and continued direct support are a constant reminder of the good in a chaotic world. We are where we are mentally, physically, financially, and emotionally because of people like you.

To our Heavenly Father. It’s because of your love I make it through each day with a smile on my face, even when it’s hard. Thank you for promising to stay with me in the storm. Thank you for giving me a heart of gratitude or a glass half full mentality, no matter the situation, even though I know it sometimes annoys people a little. Thank you for your grace and mercy.

I joke my life seems to have a timeline, BS (Before Sam) and AS (After Sam). Ironic, I know. My friends and I have had some good laughs over that one. It’s weird how life can seem to stand still and fly by at the same time. These last three years have been the longest, shortest years of my life, if that makes any sense at all. We don’t always get to choose what happens to us, but we do get to choose how we deal with the cards we are dealt. Shortly before we knew Sam would come into our life, I bought this sign for our house. When Life Gives You Lemons Make LemonadeI’d be lying if I told you I haven’t had tears streaming down my face, while looking up at that small decor in our home. That silly little sign has given me hope on days that felt hopeless. No matter what you are going through, I hope you can make some lemonade out of lemons. All you need is a little sugar.