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!
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 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.
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.
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.
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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