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.

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

The Sore Truth

There are so many things that are unfair in this life. This evening we discovered what (at this point) we’re assuming is a pressure sore on Hayden’s back. He’s never had any pressure sores any where so this is a brand new experience for us. Something that’s not a new experience, though, is my brain going straight to the worst case scenario. It’s unfair that my brain has a learned habit of immediately running through “what if” scenarios. My son is nine. How is this fair?

In this particular situation, I have no idea how this process will go, as this is our first true pressure sore. Which that alone, I should consider a blessing because so many in our “circle” constantly deal with skin breakdown issues. Hayden doesn’t mind the sore at all. He can’t feel his back. Which there again, I can see through the lens of being a blessing. The same way it’s a blessing he can’t feel his feet and is able to get lab draws and IVs placed there and it is pain free to him. I guess it’s all in how you look at the world. At this moment, he’s clueless about his back. I had to show him the photos I kept taking to even explain what it was I was talking about. He was too busy running a feisty FaceBook Live event to even be bothered by slowing down to worry with his back.

And that right there is what is so frustrating. His mind and his spirit are just fine and fired up, but his poor body just struggles in so, so many areas. Nutrition. Bowel/bladder. Scoliosis. Dislocated hips. Paralyzed. Apnea. Etc. All of these physical ailments that aren’t WHO he is, they’re just things our bodies need to function. WHO he is is a happy, hilarious, joyful, loving, quirky nine year old. And most days, I am so wrapped up in his personality and his laughter that I can take for granted and overlook all of those other areas that we deal with. Most people see him and their initial reaction is to ask if he’ll ever walk. Walking is the least of my worries for him. But I get it. I was there, too, when I first found out about his spina bifida. The thought of my child not walking just destroyed me. But now, that’s not even on my radar. Because, as I mentioned earlier, the focus changed and now my radar is filled with pulse oximeters, stethoscopes, ventilators, and beginning tonight, marking the size of pressure sores and hoping to God they don’t become infected or break down even more.

Some days it truly feels like we’re just holding Humpty Dumpty together with a roll of duct tape and a prayer. But isn’t that the same for all of us? We’re all broken, hot messes. Except most of us aren’t broken on the outside. The gift of Hayden is, though his brokenness is in his body, his spirit is whole and he’s taught me infinite lessons of love. No matter how this thing shakes out this side of heaven, I know that one day, his redeemed body is going to be nearly as beautiful as the One who heals it.

Home Is Where Our School Is

You know that nudge? You know, that really, really quiet inner voice in your spirit that ever so gently nudges you along? You have to get real still and real quiet to hear it. Lots of times life keeps us all so busy and occupied that we forget to get real still and real quiet to do much listening. Personally for me, there were many months of 2016 that I spent with my “listening ears” turned OFF instead of ON.

For those who know me, you know I am as stubborn and strong willed as they come. Yielding that kind of spirit to the Lord is something He and I work on daily. I felt God had been putting homeschooling on my heart for the better part of a year. It was something I often thought and wondered about. My gut told me it would be a wonderful fit for Hayden. My strong willed spirit said we had a plan in place, hours of ARD meetings behind us, a plan we had made and by all means we were going to stick to. I could’ve written a list of cons vs. pros and come up with a 100:1 reasons why public school was where Hayden was going to remain. But, somewhere, deep in the back of our minds, Ryan and I always knew there would eventually come a day when Hayden would “age out” per se, of public school.

In 2016, I entered a difficult time in my life. I was feeling down, discouraged, lost, abandoned. I think everyone endures different seasons in life. But this one was the roughest I had ever been exposed to. Now, I have never been one to have panic or anxiety attacks. Even with everything we have going on in our “normal” life, and people always telling me about the stress I’m under *eye roll emoji* ;), I never really felt stressed out – just “my normal.” Until 2016. That’s when I began waking up in the middle of the night from a dead sleep to be tortured by my own body. This got my attention.

I knew I needed to address some things going on in my life and get to the bottom of the cause. I met with a new doctor to review things from a medical standpoint, but I also began meeting with a wonderful Christian counselor who I have now grown to adore. It was during my work with her that I had a realization that possibly I was so strong willed and hard headed that the reason I felt so oppressed was of my own doing. It’s like if you were holding onto a rope so, so tightly that your hand has no more blood flow and the rope you will not let go off is actually what’s dragging you down deeper. The minute you let go and let God take over and trust Him, He pulls you out and the weight that was dragging you down can be replaced by freedom. There were so many things in my life that I was trying to control and worry over that the rope had me and it was dragging me down with fierce power lower and lower. As He promised, God never left me; He was just waiting on my old hard head to let go of the rope so He could carry me. I’m now reminding myself often that I don’t have to be in bondage to any thing, any worry, any person. I am free. And who the Son sets free, oh is free indeed!

This whole thing circles back around to homeschool because there was a day my counselor and I were discussing all the things that stress me out. We rated each individual item on a 1-10 scale and they were all mostly 12s. 😉 And as an exercise she asked me, “Picture yourself homeschooling Hayden. What’s the stress level doing that?” I didn’t skip a beat. It was a 0, no question. Five days later I withdrew him from public school. And would you believe, that right this minute, I can’t even tell you what all the 12s were on that list that day. The minute I heeded the call the homeschool Hayden, I had this incredible, overwhelming sense of peace and calm.

And you know what, I think Hayden did too. We began homeschooling in October, and I would say within just a couple of weeks, he was a completely different child. And I was a different person, too. The weight lifted off, joy was restored. Now, please don’t misunderstand me and hear that I’m never stressed and always organized! Ha! It’s still a hot mess over here and some days are just a wash and we try again the next day. I just think when you’re doing the thing He called you to do, the peace you find in that is so wonderful and reassuring that it makes those everyday stresses more bearable.

We loved his public school team and his teachers, therapists, principals, and they all bestowed their blessings upon us and wished us well. We still keep in touch with them and visit campus on occasion. Grayson still attends that school as a Kindergartner.

Hayden and I both adore homeschool. I treasure my time with him. His health has improved as he is more well rested and gets to sleep past 5:40am each day. He has energy in the evenings and has more play dates as a non-student than he did when he was attending school. The things Hayden endures daily to maintain a baseline of good health is vast and he was doing sets of treatments, catheterizing, g tube feedings all at school plus trying his hardest to get work completed like his other 4th grade peers. Now that we’re at home, he just thrives. I don’t even know how to put it into words. His sense of humor is back. He’s got energy. He has so much interest in learning about topics that he thinks of himself and he asks critical thinking questions – none of which ever happened when he was in public school. And it’s not because it wasn’t there, he was so exhausted and quite honestly, I think he felt an enormous amount of stress from the work load and trying to please everyone and do his best. Bless his soul.

None of us know how much time on this earth we’ll get to enjoy with our loved ones. For our family, this thought is always on the forefront of our minds. We want Hayden to have the best quality of life for as long as possible. And I would say Hayden’s quality of life has improved ten fold since October. Heck, so has his confidence level! I love the honesty, the humor, the love this sweet child offers the world. We may not be taking the STAAR test in this house, but that’s not what life is about anyway. It’s about living your best life, loving people and showing God’s love to others and if those are the only lessons Hayden takes away from his entire homeschool experience, then I have done my job as his mother.

*Insert Shameless Plug Here*

Over the last year, I have enjoyed blogging here and there about key events in our family’s journey. When a post comes to life, it is strictly because the Spirit has moved in me and I literally HAVE to write it down. My prayer is that there is a reason for that prompting and that someone has been touched by our story and our openness to share.

I do want to use this post as a “housekeeping” of sorts to report that my custom domain name (haydenrocks.net) is no longer functioning. However, the blog is alive and well. Just at a new address! You should still be able to access my older content at haydenrocks.wordpress.com as well as new blog posts that will be coming your way!

I also wanted to share with the cyber world that Hayden is currently selling T shirts as a fundraiser for his Walk N Roll for Spina Bifida team. I am so proud of the shirts we’ve created this year and I want to shout from the rooftops that YOU should buy one!! The campaign is currently open for SIX MORE DAYS at booster.com/walk-n-roll-2016.

Who wouldn’t want such a cute shirt that uses hundreds of words to describe Hayden perfectly!? 🙂

T shirts are available in a ladies cut, unisex cut and in youth sizes.

Please feel free to share this Booster campaign (and this blog) with your friends! We are in the home stretch of our fundraising efforts and we really want to reach our goal!

Thank you for supporting the North Texas Spina Bifida Association – and Hayden!