I’m Still Not There

and at this point, I’m pretty sure I won’t ever be.

A long time ago, I wrote how I didn’t care about Sam’s Down Syndrome diagnosis. I didn’t care then, and I don’t care now. Every story is different. I have read many stories about the devastating feelings upon receiving an initial Down Syndrome diagnosis. I can’t relate to those stories.

Let’s roll back five years. My baby is born, placed on my chest, starts coughing, and then not breathing. He’s immediately ripped from my arms and within an hour of his life, in an ambulance with my husband, going to another hospital. I don’t know what’s happening and don’t get see my baby or my husband until over twenty-four hours later. I wasn’t thinking about the possible Down Syndrome diagnosis then. I only wanted my baby to be alive. And this is only the first chapter in Sam’s lengthy novel.

If I’m being honest, those stories make me feel a little annoyed sometimes. I would give anything for a little boy with Down Syndrome who didn’t have a list of medical diagnoses longer than I thought could be possible.

If you’ve never read this poem, it’s a beautiful description of the process one goes through when they have a child with special needs.

Even as I spend yet another night in a hospital, I am happy to be in Holland. I was happy as soon as I landed there and realized I wouldn’t get to go to Italy. Yes, once in a while I wonder about Italy, but I can’t say I’m bummed about not being able to go there.

This is my story and no one else’s. It’s only my hope when someone gets the news their child will not be like most other children, they will realize quickly, although incredibly hard and exhausting, Holland is an a wonderful place to be.

To me this article applies to anyone who’s ever had a life changing event beyond their control. Or even anyone who makes plans and has expectations around those plans that don’t happen. Sometimes when we have too much to be thankful for, I think we can lose sight of the beauty around us. If you’re able to read this, my guess is, although it might be hard in the moment, you have something to be thankful for.

If you’re still sulking that you’ve landed in Holland, it’s my hope you won’t mourn over not going to Italy for too long. I’m NOT telling you Holland is easy. I’m only saying from experience, if you can focus on its beauty, and let go of the fact you won’t ever get to go to Italy, I think it will be easier to enjoy “the very special, the very lovely things… about Holland.”

HOME!

After seven days, Sam was able to come home! We are very thankful he is feeling better and it was a short stay, in our world.

If I added correctly, Sam has spent ten plus months of his life in the hospital and he’s only four. That also means he’s spent much more of his life at home. I’m not discounting the time in the hospital. I’m also not saying tears aren’t shed from exhaustion and other things on my part and pain and exhaustion on his. I’m not saying this isn’t REALLY, REALLY hard. I’m not saying to ignore the bad, but in my experience when we focus on the good instead of the bad, it’s harder for the negative to steal your joy.

FaceTime allowed me to stay on the phone with my daughter, off and on, for over three hours to “help” her bake a cake. She had some bumps along the way, but she didn’t give up. It was still pretty good four days later, when I was home to try it. I was a proud mama.

Every time we’re here, most of my family adapts with ease.

Every time we’re here, we meet more great nurses, doctors, respiratory therapists, etc.

Every time we’re here, I learn new tricks to help Sam and I adapt to living in a hospital.

Every time we’re here, Sam steals more hearts.

With an IV in, Sam can only use one hand. I get mesmerized by how he uses his one hand to play when he starts feeling better. The smarty pants even uses his mouth to push toys and objects in place.

This is the life of Sam. We didn’t choose it, but we have learned to adapt, be flexible, and make lemonade out of lemons. And this guy is SO worth it all.

The Extra Chromosome

Today is World Down Syndrome Day. With Sam’s complex medical needs, this has only been another day to us. 

Sam has an extra chromosome.

Sam can’t eat anything by mouth. One hundred percent of his nutrition is via a feeding tube. He breathes through his neck. His current list of diagnoses is longer than I thought could be possible.

If I could take away all the pain and suffering he has gone through, I would.

There aren’t any easy days with Sam, but the beauty of his captivating personality and infectious smile make every day worth it.

I know without a shadow of a doubt, the part I would keep is the extra chromosome.

If you were to take away Sam’s extremely high medical needs, he is the most happy-go-lucky little guy. He smiles with his entire body, from the top of his head to the tips of his toes, and lights up any room he enters.

There are no, “buts” on my love for Sam. I love him unconditionally. Period. End of sentence.

I would give anything to have a healthy little boy with an extra chromosome. Given the chance, I would not take that part away from him. 

He makes me better.

I believe people who have an extra chromosome give us the tiniest glimpse of God’s love for us. The love in my little boy’s heart makes my heart want to explode simply thinking about it.

Sam has an extra chromosome and I am grateful for it.

Today, like any other day, I celebrate Sam’s extra chromosome.

We’re home, but…

…there are more curve balls.

Overall, Sam is doing good. We are both happy to be home. There was a day when the hospital felt like home to Sam and almost for me, but that feels like a very long time ago. Thankfully we were only there for one night.

One thing I’ve learned living in this small world of a mentally complex child for the past four years is, when there’s more than one type of doctor in your child‘s room giving you news, it’s probably not going to be good.

And it wasn’t.

The hospitalist, a pulmonologist, Sam’s gastroenterologist, and his main surgeon were in the room. Let’s just say the hospitalist was not a young buck. She had clearly been practicing medicine for a very long time. When the conversation was over, and she said, “Wow, I’ve learned A LOT today!”, I didn’t know whether to laugh or cry. I laughed, of course.

Sam did not need a dilation. There was a much bigger problem found. Basically, Sam’s stomach is in his esophagus and the rest of his gastrointestinal organs are pushing up into his chest. Sam’s gastroenterologist was able to fix the problem temporarily using the scope.

He won’t be able to have his airway surgery in Cincinnati yet. We have A LOT to figure out between Sam’s doctors here and Cincinnati.

We are hoping the temporary fix will stay until we decide what the next best steps for Sam will be.

Don’t worry, as always, Sam will knock this curve ball out of the park! Making it to first base will just fine too.

Sam Strong!

Faith Over Fear!

There’s no place like home.

Sam is Back!

Sam was pretty much back to himself on Monday. When he gets sick, he falls hard,  very fast, but he comes back just as fast. Darn tracheitis.

One of Sam’s nurses who was new to us in March has never seen Sam sick. She was here the day he started to get sick. He fell hard, fast. We had a very rough day. She’s heard me forewarn her how fast it happens with him, but when she experienced it, she couldn’t believe the actuality of it. She said she went home and cried. Enough said.

He’s better. That’s all that matters.

We are all set! Surgery is already rescheduled for September!

I am bummed we will be gone during the first week of school. If we were living in normal times with school, it would be good timing, but we’re not.

Distance learning was not a super great experience in our house, but we made the best of it. It makes me a little nervous to have the “teacher” gone the first week of school, but it will be fine. According to my daughter, the teacher (aka, me) isn’t top notch anyway. 😂

The flights, hotel, and car rental are booked again and the oxygen is approved. Thankfully, all of the medical supplies that were already shipped to the hotel can just wait a little longer. The hotel general manager had no problem keeping the extra boxes for us. Whew. This traveling thing with Sam is no cake walk, but it does get easier every time.

One day at a time.

One foot in front of the other.

 

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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Sam Update

It’s been a while since I’ve shared the latest on Sam. No news is good news, right? Pretty much.

It may also have something to do with distance learning, which kicked my behind. I am very glad school is out for the summer in our house. There may have been more yelling matches and apologies needed than I am proud to admit.

Sam was also able to do distance learning, which was the highlight of our days to watch. His face would light up as soon as the camera started. He thinks it’s pretty great to watch himself, and loved seeing his teacher, paras, and classmates. Our hearts melted every time.

Sam’s teacher, therapists, and paras had an end of the year virtual graduation for each child individually. His teacher dropped off a package about a week prior and had asked us to wait to open it until the graduation. Everyone talked about all the things they loved about Sam, he opened his gift and it ended with a video of pictures of Sam throughout the school year. The tears were literally streaming down my face.

This kid who isn’t suppose to be here…absolutely thriving.

Besides a few bumps, Sam has been very healthy and continues to put smiles on everyone’s faces.

As you know, I like to pull the perks in crummy situations. Most of us could agree being stuck at home wasn’t what we would choose, but there was good that came of it for us.

When Sam has just one appointment, it’s usually at least a four hour ordeal if not more. We try our best to group some appointments together in one day for less trips overall.

While quarantined, we were able to schedule Sam’s appointments virtually, which has been a huge blessing for us. An hour versus four or more out of your day is much better if you ask me and Sam is a very busy guy when it comes to doctor appointments.

One virtual appointment did lead Sam to needing an ultrasound in the near future. Unfortunately, it’s looking likely there was a complication of the surgery he had last fall, which may lead him to another surgery. Praying against yet another surgery for this guy.

Sam’s ophthalmologist wanted to see him in the clinic before his normal six month check up. Since January, he’s been closing his right eye when he is focusing on something. We thought maybe his nearsightedness had gotten worse. We were wrong. I’m not gonna lie, the thought of Sam having glasses made me a little excited. You can’t tell me, he wouldn’t be adorable. Am I right?!

The reason Sam has been closing his right eye is because his lazy eye has gotten worse. For right now, he has to wear a patch alternating eyes for an hour a day. Sam’s nurse and I practically laughed when we walked out of the clinic. There no way he’s going to tolerate that! Wrong again!

He’s been a rock star at wearing his patch. Coincidentally, his buddy next door has to wear a patch too. This definitely helps! And they couldn’t be any cuter.

Sam and Declan
We are the patch buddies.

Sam was finally able to get a haircut! We are always amazed at how fast his hair grows. I’ve lost track of how many haircuts he’s had. We are thankful we have someone who comes to our house to cut his hair.

Right now, Sam’s focus are his GI issues, which have always been a work in progress for him. The latest thing we’ve tried has been working successfully for almost a week. We’re praying this stays that way. 

Cincinnati…

Obviously with Covid, we had to put the brakes on our trips, which is not such a bad thing. Yes, we want to get rid of Sam’s trach and it holds us back from things, but overall he has a good quality of life so pumping the brakes is okay. More importantly, Sam has been healthy the past few months and we are grateful for that.

We received a phone call about three weeks ago from Cincinnati, they will be calling in June or July to schedule Sam’s next surgery. My guess is our next big trip will be in the fall.

That’s all for now folks!

Thanks for staying Sam Strong even in the midst of all the chaos in our world.

 

 

 

Singing in the Storm

With all the craziness happening in the world, I thought it would be a good idea to bring out the perks because that is what I do when things get tough and let me tell you, we know tough times. Any parent who’s had to watch their child fight for their life knows tough times.

Thinking back, there are countless times I begged God to keep our son alive, promising Him, no matter the outcome I would still serve Him. I’ve witnessed my son go into cardiac arrest four times needing more than ten minutes of chest compressions on one occasion. In his short life he’s had several major surgeries and has been sedated well over fifty times. His life depends on a breathing tube and one hundred percent of his nutrition is through a feeding tube. We’ve gone from a two income family to one. And that’s only piece of the story.

While everyone seems to be panicking, I can honestly say, besides seeing empty shelves at the grocery store, and we’re hunkering down more than normal, our lives have not changed all that much. We are use to being “stuck” at home. When it comes to Sam, we don’t go into crowded areas very often and when we do, we are vigorously washing hands and using hand sanitizer. I go to bed at night praying God will protect Sam from any germs he came in contact with.

In our normal, everyday life, we don’t ignore what’s tough, but we don’t dwell on it either. We do our best and know there is so much we don’t have control over.

We know one tiny germ can be life threatening for Sam. Everyday we get with our sweet little boy is a blessing we know cannot be taken for granted.

Sam falls in the high risk category for COVID-19, just like he does the flu. Before everything was shutting down, he had been pulled from school because influenza had been going around. After so many confirmed cases of influenza, Sam’s doctors know the risks outweigh the benefits of school for him.

The Coronavirus has changed life for almost everyone in some way shape or form. If you have anyone in your life who is over the age of sixty-five, they fall into the high risk category for COVID-19.

That being said, for those of you who might be letting fear creep in, with what’s going on, here are some ways we keep normalcy in our lives.

  • Pull out the perks. Yeah, we were pretty bummed to find out Sam’s trach will not be coming out anytime soon, if ever, but that trach is what has given him life. Sometimes it’s hard to pull out the perks, but everyday, try to pull out at least one perk.
  • Be responsible and do your part by following the Center for Disease Control and Prevention (CDC), where you will find the most accurate information, but don’t let it consume you. If you watch the news a lot and your feeling anxious about what’s happening, take a break from it for a few days. You can follow what’s happening without watching the news by going to the CDC website. I’m not on social media, but from what I’ve heard, you might think about taking a break from that for a bit too.
  • Laugh even when it’s hard.
  • Take one day at a time. I’ve lost track of how many times our days have taken a completely different path than what we had planned since Sam. We make our plans, knowing they could be altered. Keeping this mindset has helped us be adaptable and flexible with whatever changes need to be made.
  • Call someone you know will lift your spirits. It’s important to note, I didn’t say text.
  • Let go of what and who you cannot control, which is pretty much everything, and for sure everyone, except for you and your actions. I’ve learned as soon as I start to worry about something, I try control the situation, which I generally regret doing, and it often seems to make things worse.
  • Sing in the storm. For those of you who have followed Sam’s story, you have probably learned my faith has played a vital role in keeping a smile on my face. Along with my faith, comes the music I listen to that sometimes bring on heavy tears that needed to fall and then a hope that gets restored. Sing in the storm, knowing the storm might bring wreckage, but the sun will eventually come out. Raise a Hallelujah

I pray God will give you His peace that passes all understanding as you navigate through the unknown. I pray you can focus on what’s good, and be mindful of, but not dwell on the bad. I pray you are doing your part to slow the spread without panicking and letting go of what and who you can’t control.

You’ve got this!

To those of you who believe, I leave you with a profound statement I heard about two years ago.

You can worry or trust God, but you can’t do both.

FAITH OVER FEAR!

COVID-19 AKA Coronavirus

About two weeks ago, I did my usual run to the pharmacy to pick up Sam’s meds. We had been running low on hand sanitizer, which is a staple in our house so I figured I would pick some up.

I ventured over to the aisle where I knew I would find the hand sanitizer. As I turned the corner, I noticed empty shelves. You guessed it. There was absolutely no hand sanitizer. That’s silly, I thought to myself, I guess I’ll get it at Walmart. The shelves were completely empty there too. For real?! This can’t be a result of people freaking out about the Coronavirus?! I’ll try Amazon. Nope. I’m not paying that kind of money for a six fluid ounce bottle!! 

This is a true story. It’s hard for me to understand. As you are probably aware, there are many other things flying off the shelves besides hand sanitizer. Being precautionary is one thing, but wiping out stores tells me fear and panic are involved.

We are now on our last bottle of hand sanitizer and I still haven’t been able to find any. I’m not going to bend over backwards to find it and I’m not going to pay a pretty penny for it. We have kind people in our life who know how important hand sanitizer is in our house and have bought some for us.

People are living in fear. Fear of what might or could or might not happen. Being precautionary is one thing, panic is another.

We have a medically fragile son. How many are feeling and reacting to the Coronavirus, we could feel and react the same way each and every day. This is the reality of anyone who has a medically complex child. Every single day, germs are very BIG deal in our house.

We choose not to live in fear.  We do our best, but that’s all we have. We take precautions, but don’t let the weight of what the germs “could” do to Sam consume our minds. We continue to wash our hands and say our prayers because Jesus and germs are everywhere. I try focus more on the Jesus side of things because I believe His plan is bigger. 

Worry is a thief of joy. The more you dwell on your worry, the more and more tangible it becomes. A worry can’t change anything. It is just that, a worry. It’s our mind dwelling on the maybe. I have two things in my life right now that are legit things I could worry about. If I sat and thought about, continually talked about, read about, and listen to all the terrible things that “could” happen, I would likely drive myself nuts. We have to choose to make technology a blessing and not a cursing because unfortunately if we aren’t careful, fear and panic can easily set in.

Try not to let the fear of the Coronavirus consume you. Keep living the life you are hopefully already doing by good hand washing and staying home if you are sick.

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