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!
Team Sam Strong
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.
3rd Annual Ronald McDonald House Walk
“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.” I never knew the impact of Ronald McDonald … Continue reading 3rd Annual Ronald McDonald House Walk
"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."
I never knew the impact of Ronald McDonald House (RMH) Charities until life threw a curve ball at my family. If you don't already know, RMH Charities provides a home-away-from-home to keep families close during a child's serious illness. For over seven months, they did just that, and more for my family. Please consider donating or walking with us.
Click here for more information on donating and/or walking.
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. I'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.
This Precious Life
As we all know, getting family photos taken is not the most affordable thing to do. Let's face it, it's down right expensive!
Thanks to a sweet gal who is using her gifts for others, we were able to capture some memories we will cherish for years to come. Like Nicole says, it's not going to end world hunger, but it is a gift.
There isn't anything much more powerful than knowing your gifts and then using those gifts for others. That's just what Nicole is doing and we will be eternally grateful.
It's been a dream of Nicole's to start "This Precious Life" and we were able to be her first candidates.
The Holidays and the Complex Child
Why is getting sick such a big deal for the complex child? Why does the fear of getting a simple cold bring slight panic into the hearts of families and caretakers of a complex child? When Sam gets sick, he gets so much more sick than a healthy child. A little cold makes for several more added nebulizers throughout the day, which is on top of the daily nebulizers he already takes. A cold can easily turn into pneumonia. A cold can quickly turn into another hospital stay. Don't even get me started on the flu. Ugh. That opens a whole different can of scary worms in our world.
Why do doctors want their complex patients basically quarantined at home especially during cold and flu season? They are well aware of the repercussions.
Why do the little germs, we barely gave a second thought about with my three other kids, seem SO MUCH BIGGER to us now? In a sense, they are much bigger for Sam, not literally, but figuratively. When my other kids got/get sick we might go to the clinic. Sam skips the clinic or urgent care and goes straight to the hospital. There are no in between spots for him.
Around the holidays, why are there more complex kiddos in the hospital? We get more brave during the holidays. We want to feel like a normal family.
Although it looks like I'm a complete freak in my writing. I am actually able to keep my anxious thoughts fairly under control. There is so little we can control. We can't control what happens to us, but we can control how we respond. We do what we can and follow our doctors orders. I trust in a God who's purpose is only good, and I believe in a God who wants me to give Him all my worries and concerns. I try my darndest to do just that.
I am also incredibly thankful for a family and friends who are understanding of Sam and his complexities. I've started to meet people who live in our world and many can't say the same. Our family and friends stay away when they are feeling under the weather and sanitize and/or wash their hands before they touch Sam. Again, there's only so much we can control. It's important for Sam to be around his family and friends. I know we all cherish these few and far between times. Sam loves to be around people. He's become a little show off and loves when everyone has their eyes on him.
We made it through the holidays without Sam getting sick, which is just short of a miracle with how brave we were. We spent Christmas with family, and we had lots of family staying at our house from out of town. I'm pretty sure they would tell you I did a good job at keeping my anxious thoughts under control. Those of you who know me, know I am far from a Nervous Nelly, but man, Sam has really made this Nelly character come out in me once in a while. I'm human, right?! Sam is healthy right now and has been for over a month. That's what we choose to keep our thoughts on. And he's going to stay that way!
Is This For Real?!
Every child's life is a gift, no matter their diagnosis.
A post I wrote in August of 2017...
Yes, Sam has Down Syndrome. It always throws me a little off guard when people think it is a thing for us. I don't know, maybe, if it was Sam's only diagnosis, it would have been. It is not Sam's only diagnosis. Sam is what the medical world calls a medically complex child. When your child fights for their life, a diagnosis like Down Syndrome is not what you think about. When your child is in a medically induced coma for 34 days, you don't care about Down Syndrome. When you spend months in the hospital, Down Syndrome is no big deal. When your child has multiple surgeries, Down Syndrome is not a concern. When you bring your very medically complex child home for the first time, you are not thinking about Down Syndrome. When your child is put under one to two times a month to get his esophagus stretched, Down Syndrome is not important. When you make weekly, sometimes more, trips to the hospital, it's still not a thing. Yes, maybe it was initially, for a split second, but I don't really remember that part very much at all. I just wanted and still want my baby alive and healthy. When you have a medically complex child, that is your focus one hundred percent of the time. Down the road, when hospital stays, surgeries, the fear of Sam getting a cold, etc. are a thing of the past, I'm guessing then, Down Syndrome might be a thing for us, but maybe not, I don't know. Until then, and always, he is just just our baby who needs to be loved and kept as healthy as possible.
If you are someone who thought Down Syndrome was a thing for us and you feel bad about it, please don't! It has weighed on my heart, and I want people to be aware. It makes sense to me. Down Syndrome is something more people can relate to. Not many people have heard of Long Gap Esophageal Atresia and even less have heard of a Type II Laryngeal Cleft. When you have a medically complex child, Down Syndrome is not your focus. This doesn't mean we want to pretend Sam does not have Down Syndrome, quite the contrary. This also doesn't mean people can't ask questions or can't talk about it with us. It's only a glimpse into the heart of a mama with a medically complex child, who's sharing how Down Syndrome is not on her radar right now.
A new, sweet friend of mine, recently posted a blog related to a mission she is not only trying to, but is beginning to make waves in a sadly still biased world. In order for you to understand my feelings, you have to take a minute and read her post first...I'm sorry all your hopes and dreams are over for your child. (Click here)
Is this for real?!
Appalling, right?!I honestly do not remember much about Sam's Down Syndrome diagnosis. After reading Carissa's post, I drilled Sean with many questions, about what he remembers, while also trying to piece together what I remember.
What Sean remembers...
...when the ambulance came to take him and Sam, not long after Sam was born, the Nurse Practitioner from Children's told him not to worry and that this baby would be the light of his life. She told him about her daughter who had Down Syndrome and how she was the joy of her life and so many others.
Message...Sam's life is a gift.
What I remember...
...a neonatologist from Children's calling me at Mercy Hospital the day after Sam was born. He told me what, at the time, they thought was wrong with Sam. He also said, "All the nurses are telling me he has Down Syndrome. I don't see it, but the nurses are always right. We will do the blood test and we will see."
Message...Sam may have Down Syndrome, which is neither good, nor bad, just fact.
What we both remember...
...after Sam's dramatic first time appearance into the real world, someone asking if we knew he had Down Syndrome.
Message...Sam may have a diagnosis the family is not aware of. Again, neither good, nor bad, just fact.
...when we first received Sam's blood work confirming his diagnosis of Down Syndrome. Although, neither of us needed blood work to confirm it. This was really hard for both of us to remember. We think we pieced together the neonatologist who delivered the news. That's about all we can remember. I can tell you, I know, this same neonatologist views Sam's life as a gift, as she chose to feature him on the MN Neonatal Foundation's (Click here) website.
Message...Sam's life is a gift.
Not once did any medical personnel make us feel Sam's diagnosis of Down Syndrome was a hopeless or bad thing. Some of what we remember was neither good, nor bad, just fact. Never did we feel we had to convince anyone Sam's life is a gift.
I'm sorry all your hopes and dreams are over for your child. What if we would have heard these same words during Sam's often hopeless looking situation? Would we have the same feelings as we did when I wrote about Sam having Down Syndrome so long ago? I think so, but they probably would have been stronger and/or more intense. Would it have made our already hard journey feel heavier? I believe so. If we felt we had to prove Sam's life is a gift, would Down Syndrome have more of a focus for us? I don't know, but maybe. I can't imagine going through what we have with Sam, while also feeling like we had to convince people Sam's life is a gift. My heart hurts just thinking about it.
I am so thankful we had the experience we did, but my heart aches for those who will receive a message that says their child's life is not a gift. Can you imagine how you would feel if someone made you think your child's life was not worth living?
It's 2...0...1...8! The fact that Down Syndrome is still presented in a bias and hopeless way, boggles my mind. I have yet to meet a family who loves their child less because of his/her diagnosis. If anything, that child has taught them to love deeper and more passionately than they ever have before.
I tear up when I think of how many lives have already been touched by Sam. And he's only two! All of my hopes and dreams are not over for my child. They are just beginning. Every tiny hurdle he makes is a hope and dream we have for him that has been fulfilled. In all reality, he has already surpassed any hope and dream we ever had for him. He brings so much joy into our life and so many others. One smile from Sam and your heart is full. Our Sam has inspired me to do things I never imagined I would. All of our hearts are bigger because of him.
My Life is a Gift
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
Because 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.
After 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!
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.
Row the Boat
Check out Sam's story in the Pioneer Press. The journalist could not have done a better job.
Click here to see the story of our oar.
Row the Boat!
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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