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.

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. 

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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.

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.

Click here to see what “This Precious Life” is all about.

 

 

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!

Sam

Is This For Real?!

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
My Life is a Gift