Short Story on the Big Surgery Today

Surgery is done.

We are home.

We’ll find out in four weeks if it worked or not.

Besides a few, quick scary moments, Sam is doing awesome!

We are very tired, and even more, mentally drained.

We can’t thank you enough for your prayers and meals!

That’s the short story. The longer version is coming soon…

Sam Strong!

Faith Over Fear!

Many Thanks to the Gopher Football Program

20180923_182602Because of Sam, his great story, and a simple oar we made for the Gopher Spring Game in April of 2017, we were recently invited to a closed Gopher football practice. We went not expecting much. We were just excited to be up close with the team. Coach Fleck thanked us for coming and sincerely interacted with each of us.

The Gophers went above and beyond. After practice, every single player came by, signed a poster for Will and greeted each one of us personally. Inside, I was a nervous wreck as most of them were high fiving Sam. Remember, a simple cold can easily send Sam to the hospital. After, Sean and I discussed whether or not we should have stopped them. It made me feel better knowing Sean felt the same way. It was so endearing watching Sam’s reactions as well as the players while their massive hands high fived Sam’s tiny hand. Don’t worry, we sanitized the heck out of his hands after. As always, anytime we take Sam in public, we are all on high alert for the next three days, hoping and praying he doesn’t get sick. All clear this time!

It’s not over yet.

20180923_183849After the personal autograph session, we had a personal tour of their beautiful training facility. Will use to say he wanted to go Harvard, then it was Stanford, and now he wants to go to the University of Minnesota and play football for the Gophers. After our personal tour, I’m not so sure his decision will waver again. Both Sean, a Gopher football fan through and through, and Will were in heaven.

On our way home, Will said, “Sometimes, when Sam’s taking up all of my time, I think, I wish you were normal, and then we get to do things like this.” I, of course, started crying. Will responds, “Mom, that’s like the third time you’ve cried today.” There were several reasons I was crying, but mostly, my heart was extra full.

His comment threw me a little off guard. You see, Will has never once complained about Sam and how much work he can be. Will is so good with Sam. I love to watch how much he loves him and interacts with him. I am happy Will feels he can express his feelings. I reassured him those thoughts were completely normal, I was glad he felt he could share them, and not to stop.

Those of you who are not familiar with the Gophers head coach, P.J. Fleck and where his “Row the Boat” mantra came from, take a minute to watch this video.

Do you know there are people out there who mock “Row the Boat”?! It breaks my heart. Like P.J. Fleck told us, when you allow your life to go public, people will scrutinize. That’s true, but you have to be strong in order to put up with the scrutiny, especially when it relates to losing a child.

Although not planned, the other family from the Pioneer Press article was there also. Wow, what an incredible family. I’m not going to lie, it felt a little uncomfortable. I imagine, the wounds are still very fresh as it wasn’t very long ago, they lost their daughter. Although, I believe, grief has no time limit. Time and faith might make life a little easier, but it doesn’t heal the pain and heartache of losing a child. Life with Sam might be tough sometimes, but I’ll it say over and over again, we got to take him home. My heart aches for those who don’t get to do that. Thank you to the Conn family who were so warm and welcoming to us.

Thank you to P.J. Fleck, the rest of the staff, and all of the players who made my son’s (and secretly my husband’s) day, and maybe year. Sam probably won’t remember it, but I know, the rest of us will.

Row the Boat!

20180923_183648

Sam Strong Oar
Can you find our “Sam Strong” oar?!

Thank You for the Prayers

Thank you for continued prayers for my cousin’s husband. The reason for my the emergency surgery was because he had the strongest or worst type of a MRSA infection. The infection started in his shoulder and moved to his spine. So scary! Unfortunately, he is more susceptible to MRSA because of other health conditions, which make it harder for his body to fight off.

The good news is, he has been doing a lot better! He has been able to walk more with a walker. Please keep him and the family in your prayers as he continues to recover.

Resilient or Not Resilient

I believe there are two types of kids when it comes to being in a crisis. The ones who are resilient and the ones who are not.

Our world has been turned completely upside down for the past two years. For reasons I cannot share at this point, we would say we have both types of children, resilient and not resilient.

According to the online Google dictionary, being resilient means “(of a person or animal) able to withstand or recover quickly from difficult conditions”. I would say our family has endured difficult conditions.

You can be taught and shown all your life how to become resilient, but that doesn’t mean you will be. You might be a resilient person, but that doesn’t guarantee your children will be. As parents, no matter what we do and/or say, at the end of the day, our children make their own decisions and their actions determine their consequences.

When our children are young, the consequences don’t generally cost them that much. With age, the consequences come with a much higher price tag. Parents who are concerned about the integrity of their children do their best to set an example, love them, and give consequences when mistakes are made, in hopes their children will become virtuous adults.

We are learning, unfortunately and fortunately, when a crisis hits, you find out quickly which of your children are resilient.

I know I continue to ask for prayers for Sam’s health, and I truly believe he would not be here today had not so many of you continued to pray for him, but I do ask that each time you pray for Sam, pray for the hearts of Ryan, Will, and Abby. My love for them is no different then my love for Sam.

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What I Hope People Understand About Our New Normal

Raising a medically complex child adds a whole new layer to life. It is by no means easy, but living our new normal has taught me so much. I am incredibly thankful for each new day God gives on a completely different level than I was before Sam. This is a world I really didn’t even know existed. We have experienced things most will not. That being said, there are things about our new life I hope people understand.

Don’t stop inviting us.

Our new life truly forces us to live one day at a time, whether we want to or not, which really isn’t such a bad thing. As much as we want to commit to something, in the back of our mind, we know, first hand, plans can change in an instant, or often they don’t work with our curfew, yes, curfew. Some days our nurses leave at 3:00, and some days at 7:00, and some days we don’t have a nurse at all, because they get sick or the nursing agency isn’t able to schedule someone. As much as we want him to, Sam doesn’t get to go out and about very much. Per his doctors request, he generally only leaves the house for an appointment or to go on a walk. Your cold can be Sam’s PICU stay. Our Minnesota frigid weather left us without a lot of options. Summer opens a whole new world for us and we are loving it!

Everything we do centers around Sam’s nursing schedule and whether or not we have a nurse. And whether or not Sam is healthy. Although we might say no A LOT, because we really don’t have any other option, or have to cancel at the last minute, we still want the invite.

It’s okay to ask.

Sometimes, I get the feeling people don’t know what to say, so they don’t say anything at all. It’s okay to ask about Sam. He’s a very complicated guy, even in the medical community. That being said, unless you have a child like Sam, keep in mind, things you suggest, we’ve already tried or already know about. We don’t mind answering your questions. You just have to ask.

Things are not “back to normal”.

Things will not ever be the way they were, but that’s okay. It’s a new normal with a whole new game plan and although the new one is not always easy, we wouldn’t change it. Sam. Is. Alive.

Be careful what you say.

I can say now, more than ever, I try hard to think before I speak. Of course, I still fail. This experience has taught me someone’s complainant may be the other’s wish. It’s awful hard to listen to a complaint you would give anything to have. I guess I try not to complain in general. It’s something I’ve always tried to steer clear of. Even when it’s hard, trying to find something to be thankful for can shed a whole new light on a subject. “Give thanks no matter what happens.” (1 Thessalonians 5:18 NIRV)

We don’t want pity.

I’m not going to lie and tell you life with Sam is a cake walk. It’s. Not. Caring for Sam and three other kids, is by far, the hardest and scariest thing I’ve ever done and then some. There are days I wonder how we do it. There are days I cry, but we all have days like that. Life isn’t always easy. Sometimes slapping a smile on your face can be tough, but I can tell you from experience, it can do wonders. I’ve said it before, and I’ll say it again, I choose to dwell on the perks. You might read about the hard stuff, but if you see me, you probably won’t hear me talking about it.

Sam has made me a better person. I know my kids will be better having Sam a part of them. We could walk around telling people all the difficult details, but again, I believe attitude has the power to worsen or improve circumstances. When you feel pity coming on, remember, you would do the same if you had a Sam. The joy Sam brings us far outweighs the day to day challenges we face and have faced.

I’m guessing I’m not the only mama who has a child with special needs and/or complex medical issues who has these feelings. I would say I am an open book, heart on your sleeve type of gal. This is a glimpse into a world that is foreign to many and it is my hope to bridge any gaps of misunderstanding.

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