The Day the Linen Closet Died

So. Many. Boxes. Just dropped off in my living room and I was expected not only to know how to use the items inside, but also to find a spot big enough to store them in an organized fashion so all the many [many!] hands working in my home would know where to find the supplies they needed.

That’s how this thing works. You take a baby home on a ventilator and the housewarming gift you receive is the presence of a DME (Durable Medical Equipment) company and all of their “goodies” being offloaded to you. A welcome offering. A tease of what the next decade or more (if you’re lucky) will bring. Loads of supply shipments – chux pads, ventilator circuits, suction catheters, pulse oximeter probes.

And so begins the “overtaking of all the space” movement for families like mine. Our home is now a PICU Omnicell. The storage for beautiful guest towels and extra bedding is replaced with bins and tubs attacked by a label maker. Organization is key when there are staff members working in your home around the clock and they all have to access the closet – previously known as your beautiful linen closet – to do their job.

Labels read “Suction Canisters” “Gloves” “Oxygen Tubing” “Vent Filters” – This is your life now. Welcome to it.

I caught a glimpse of our linen closet last night. The door was open and the hall light was on. I just sat and stared at it for a long moment. I pondered out loud to Ryan, “I wonder what normal people have in their hall linen closets?”

We’ve lost our garage space, our hall closet space, our kitchen cabinets, our pantry. It’s all dedicated to storing and organizing all the equipment required to keep a human alive. We trip over bikes in our garage because we have no place for them, since the bike storage is taken over by catheters and sterile water. We keep an Instapot on top of our dryer because an entire kitchen cabinet is full to the max of meds, syringes and ports. We hide PT benches and equipment behind our couch so we appear “normal” when people come over.

It’s an odd feeling to contemplate what a normal house would look like, knowing that if you had a “normal house” it would be because your child wasn’t living in it with you.

In random moments like this – catching a glimpse of a linen closet in the light or seeing your neighbor’s tidy garage while you’re out on a walk – that you evaluate what your priorities are. Sure, I would love a Home & Gardens Home, but that wasn’t in the cards for me. Learning what you have to let go of helps you realize what you want to hold on to.

Our house isn’t perfect, but it’s full of sweet memories and little people and loads of {loud} fun. And honestly, I think I like that more than a house that looks like a Container Store show room.

A Paralyzing Gift

I’m not one of those people who always looks on the bright side of ev.er.y.thing. I try and make light as best I can, but I’m realizing that it’s ok to admit things suck sometimes. It’s ok to feel sad. It’s ok to just sit in yuck for a bit. My biggest pet peeve is when someone tries to “fix” everything for me when I’m having a rough moment. My favorite thing is when someone will just sit in the yuck with me for a minute; that’s really all I need.

However. There really are bright sides to situations that suck. There really are ways it could always be worse. And there is always something to be thankful for. For example…..

SUCKS: My son can’t feel the majority of his body – can’t walk, never will.

JACKPOT: My son can’t feel the pain that comes along with a 95 degree curve in his spine.

I get so wrapped up in the day to day of doctor appointments and medical conversations that often times I forget to stop and actually think what these diagnoses might feel like to a “typical” person. I remember one time, my middle son was maybe two or three years old at the time and was having a major allergy and respiratory issue. I took him to this pediatrician and he offered up a treatment plan and then he said, “If that doesn’t work, we may need to do some nebulized breathing treatments.” I was SHOCKED. How could my sweet, perfect little angel child need a nebulizer?! At this time, I was also doing nebulized treatments for Hayden 4-5 times a day. But that was just Hayden; it didn’t phase me. When the realization hit me of what it would be like for a typical child to have to sit still and wear a mask on his face multiple times a day, I was appalled at the idea.

The same is true here. Hayden has scoliosis and always has…. I’ll bet there was about 15 minutes of Hayden’s life that his body wasn’t out of whack somehow. And those would be the first 15 minutes – and even then, his legs never have stretched out straight, so when they measured his length as a newborn they had to bend the measuring tape to count a measly 16″ inches long. Hayden’s worn a thoracic lumbar sacral orthotic (TLSO) for about 10 years of his life. It usually corrects the curve decently. But about four months ago, his curve started to progress beyond what his TLSO and his seating could accommodate. In the span of four months, his spinal curve had progress from 62 degrees to 95 degrees.

When I first processed that information I ran it through the filter of myself….. here’s another risky surgery we have to debate about doing and then sign consent for. Here’s another long recovery process, more hospital stays, more nights away from home. But then I had this weird moment of clarity when I thought, “What would it look like for a ‘typical’ kid to have a 95 degree curve in their spine? Surely it can’t feel good.” And I realized the fact that he can’t feel the pain was a gift. How happy would Hayden be and how encouraging could he be to others if he was in a constant state of excruciating pain and on medication to treat his pain? At this moment, he can’t feel or move his body, but he’s literally the happiest person I know. I’m able to see the numbness, the absence of sensation as a blessing to him and to us.

It reminds me of Joseph from wayyyy back in an Old Testament story. Joseph had been through the ringer with some circumstances that he didn’t choose (same…) and just when he thought he had finally hit smooth sailing, he was framed and charged for a crime he didn’t commit and it landed him in jail. He sat in jail for two years, but the repercussions of that jail time and some dreams he interrupted for just the right people actually ended up helping an entire nation of people. (Plus, most of Genesis ends up being about Joseph and from about chapter 39 on through the end, you can see how God used Joseph and had actually gifted him multiple trials that were for a greater purpose than just Jospeh.)

So for today, I’m appreciative of the gift of Hayden’s numbness and a body that offers him respite from an amount of pain no child should have to bear. I’m choosing to trust that God’s plan for Hayden’s life, my life, and your life, friend, is for a greater purpose than just for ourselves.

Out of Body Experience

A quick story. An experience unusual for me.

The setting: my house.

The characters: Mom, Grayson, Ethan, Foster Daughter.

Missing: Ryan and Hayden (who were inpatient overnight at a sleep study in the hospital.)

Once upon a time……….

A rare, cool summer evening, that’s not only tolerable to be outdoors, but pleasurable was gifted to us this evening. Late summer nights are my favorite. When the sun isn’t ready for the day to end just yet and it keeps hanging around just a little bit longer. Popsicles and bicycles, sidewalk chalk and neighborhood pickup basketball games. These sights and sounds of summer I treasure.

I had taken up residence in my lawn chair out front, watching the boys riding bikes up and down our quiet street, while little Miss and I played with bubbles and sidewalk chalk. No one was fighting, which is an extremely rare treat. 😉 Each of us, just enjoying each other’s company, wishing the night wouldn’t end. We migrated to the back yard and the kids jumped on the trampoline and climbed on the jungle gym while I sat on the back porch and just watched and listened to their laughter. We stayed out past our normal bath time because it just felt right and why not? – it’s summer. This moment here is what summer nights were made for. Late night fun outside, just riding bikes and jumping on trampolines, playing pretend with the neighbors and your siblings. Not a worry in the world. Not in my world anyway. I was free – for just a moment.

I was free from worry about what time the cath timer will alarm. I was free from dragging the suction machine around. I was free from the beeping reminding me to check the emptying oxygen tank in order to raise up saturation levels. I was free from being called inside at a certain time (regardless of the season or the amount of beauty the night held) to begin night treatments. I was free to sit on the back porch and just enjoy my children being children. I got to watch them having fun and enjoy life, which in turn was an enjoyment for my own life. I was free to do these things.

But I wasn’t free of the guilt of enjoying the freedom. Part of my heart wasn’t with us, even just for a night. The piece missing was having a legitimately fun evening inpatient because that’s what he enjoys – meeting new nurses, playing TV games on the hospital network, scanning his meds and his hospital bracelet with the handheld device. He doesn’t enjoy riding bikes, jumping on the trampoline, eating popsicles. I shouldn’t have felt guilty; he was having a magnificent summer evening with friends. But I can never forget. I’ll never forget I live two lives. I’ll never forget I have two families and even when I switch back and forth from each of my mom roles, I’m never free of the other one.

Moral of the story: If you have the freedom to watch your kids being kids without a timer telling you when you have to go empty their bladder, administer their med, perform their respiratory treatments, replace their oxygen tank, turn on their ventilator – please enjoy that time. Look up from your phone, be present with them and be thankful for that time and freedom. And try to put the guilt to rest, even if it’s just for one beautiful, cool summer evening on the porch.

Like a Sore Thumb

It’s sports season again in our household – and you know what that means. Me and thousands of my closest friends will come out in droves to frequent the local public school gyms to watch our kids show of their skills they have honed in the hourly practice of the week. Honestly, it’s adorable to see little kids in matching uniforms trying their hardest to make a slam dunk – or just make a basket into the right team’s hoop.

Even though he hates it, we make Hayden come with us to at least a few sporting events per season to show support for his brothers. Heaven knows I have spent many years dragging his brothers to appointments they did not want to go to, so Hayden can do his brothers a solid and attend an event or two and show support. We are a family. That is what families do – they go to events they don’t care about and put on a smile and suck it up and deal… then their therapist thanks me later for the unending material. 😉

The part I hate the most, though, actually takes place well before I enter the building. It’s the PARKING LOT nightmare! Recently, there was a tournament going on for both of our younger boys and we had to split up the parenting duties. My husband had our two boys with him and I had Hayden with me. I had stayed back home to complete Hayden’s morning treatments and bowel management routine, missed the first games and then Hayden and I were planning to meet up with the rest of our family at the gym.

The two of us pulled into the parking lot in our handicap plated, beaten up, wheel chair deploying van looking for that “golden ticket” of a handicap spot with the lines painted on the right hand side of the parking spot for our ramp to deploy. I call this spot the “golden ticket” because without those lines in the correct spot, Momma has to back “the beast” in to a non-ideal spot to get the ramp to deploy with enough space, and no one wants to endure that fiasco of backing into a parking spot, let’s just all be honest.

This particular [insanely windy] day, there were NO handicap spots available at all! No “golden tickets,” no spots near the end of a row I could make do with, nothing, nada, zilch! So I had to park wayyyyyy back in the lot and deploy the ramp there and then push Hayden from back there. Obviously, the basketball game was over when we made it to the front door of the school. (Did you really expect this story to go any other way?? ha!)

But that experience got me thinking – wouldn’t it have been so much easier if the parking spot I needed was just like what everyone else was using? Just a plain Jane, run of the mill parking spot. No particulars necessary. No need to stand out like a sore thumb and have only a specific handful of spots that would work? But that’s not our lot… Hayden and I, we were destined to drive around and forced to be picky about where we landed. We have to have special license plates, even, granting us permission to park in the “special areas.” And I’ll tell you, for an introvert trying to fly [quietly] under the radar, parking lots just make me sweat. Profusely. (And I’ll save my anger issues for those citizens who take advantage of handicap parking spots for another post or, perhaps, for my tell all book….)

Here’s the deal, though. I was called to stand out. I was called to NOT match all the other cars in the parking lot. To not blend in so nicely. The parking lot was full of people just blending in and not sticking out. All the cars look the same, park the same, and fit between two beautiful and straight white lines. But not my car. You can spot my car from afar. Special license plates in a special area of every parking lot with crazy diagonal lines all over the place and signs posted that essentially read, “Look out world! Something different is headed your way!”

But you know what? If you’re following Jesus, He told you to stand out too. Me and you. We have got to be the salt and the light of this world. We cannot go through life just blending in with everyone else, flying under the radar. He did not call us to that. He did not tell us to do our best to blend in and find a place in this world that’s just perfectly easy and laid out, and then land there and never look back. What in our daily lives is making us look contrary from the entire world? Something about us needs to be screaming, “Look out world! Something different is headed your way!”

I am so thankful to be in a life and in a set of circumstances that FORCE me to stand out because it makes it so much easier. It almost feels like I was gifted the easier version of “Salt and Light 101.” If these difficult circumstances that I wake up to everyday make it easier for me to stand out in the world and to point others to Christ, then I welcome this scenario. And once I am out of my comfort zone, it is so much easier to look around and find even more ways to keep standing out in this world. I do not want to conform to the world. I want to look like the opposite of the world so that others might see me, struggling in the wind to unbuckle my son’s wheel chair from the van floor and rush into a basketball gym only to miss a game, and go, “What is the deal with this girl? Something is different here – Who is giving her this joy and resilience that not even a rough Saturday morning in the suburbs has the ability to dim her light?”

And I want that for you, friend. Because the joy isn’t in the perfect circumstances; the joy is in Jesus.

“You are the light of the world. A town built on a hill cannot be hidden.  Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. 1In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.” – Matthew 5:14-16

The Old Ball and Chain…

At weddings. At restaurants. At church. At family reunions. At birthday parties. Name an event. Name a place. It’s there. The ball and chain is there. It never stops and it never goes away. When you just fell asleep. When you just sat down to a hot meal. When you just got into a good conversation with a friend. When your kid wants to cuddle with you. The ball and chain wins every.single.time. It owns you. You do what it says and you do it quickly. 

Pulse oximeter: a medical device that indirectly monitors the oxygen saturation of a patient’s blood and changes in blood volume in the skin

Translation: ball and chain

My son has been on constant pulse ox monitoring for 11 years, three months, and 17 days. 96, 832 hours the pulse ox has been monitoring him. (Give or take a shower or two.) That’s 96,832 hours my ears have been listening to see if my son needs me. I’ve been on call for some 96,000 hours. For all of this time, Hayden has had a pulse ox on his toe revealing to us what he needs. If he sats too low, he needs more oxygen. If he sats too high, he needs less oxygen. If his heart rate is too high, he may have fever or have distress somewhere in his body. If his heart rate is too low, he may be sleeping too hard and needs to be stimulated. There has been an occasion or two where the pulse ox saturation number read as a dotted line during emergency events while I was actively bagging him, breathing for him to try to keep him alive until the ambulance arrived. But more often, the pulse ox is just there as an appendage reminding us that Hayden is still alive, still breathing, heart still beating. 

The pulse ox and I have a love/hate relationship. Essentially, it loves to do its job and do it well; I hate it and cannot stand the sound of it beeping. Yet every time, I get up. I go to it when it calls me. It beckons, and I come running. It is a necessary evil. Its annoying beeps remind me that my son is alive and breathing and that his heart is beating, which is a blessing. I know many, many mommas who would give anything to hear their child’s pulse ox alarming just one more time. And so, I will adjust my posture from one of annoyance, to that of gratefulness that my son and all of his equipment is still here with me, for today. To those mommas out there who no longer have your child’s equipment beckoning you, I honor you. I see you. I respect you. I love you. You and your child are teaching me. 

Is there something in your own life that you need to change your posture about? What is it that needs a perspective shift? You can choose that change. Right now, this minute. You get to decide your mindset about it. Is there something in your life that is a constant irritant, but if you could just take a step back you could label it as a blessing rather than a hindrance? Do it. Embrace it now. Don’t let another day pass before you learn to relish the ball and chain. 

That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

2 Corinthians 12:10