Month: January 2018

Last week I had the privilege of speaking at an event in my hometown. A few months ago, I was invited to talk at the annual prayer breakfast in Tipton, MO. When I was first asked, even though I knew I’d be nervous, I figured things are always more interesting when you say yes, so I thought “what the heck?”

I felt so lucky to have a chance to talk about our family to a room full of familiar faces in my hometown. It was wonderful to see former teachers, family and friends and many others who I’d never met. I somehow managed to make it through without tears and then was overwhelmed the kindness and support of the crowd there. I got so many hugs! In the words of one of my best friends who traveled hours to be there that early morning with her baby, no less, “HUGGING IS THE BEST!”

It was a very humbling experience. I love the way God weaves things together, even the small details. The following are the words I shared at the prayer breakfast last week. I hope you can find some encouragement from them.

A little over a year ago, I sat thinking about the new year and what I wanted to accomplish. I pulled a notebook from my purse and jotted down my goals for 2017. Some were your typical new year’s resolutions, focused on health and fitness, others related to finances or new experiences and finally, very hesitantly, I wrote down, “Find a way to share more of our story.” I was scared to put it on paper. Even just holding myself accountable to that goal was somewhat daunting to me. I had been feeling the nudge for a while to speak out about our experience, but it still felt scary. I thought writing that down as a goal might encourage me to actually do it.

Sadly, 2017 came and went and I only successfully accomplished 1 out of 7 of my goals for the year. I didn’t run the race I planned to or save as much money as I hoped. But I think for me, the one goal I was able to cross off my list was the most important…sharing my story.

Some of you may be familiar with my story and others may not know anything about my experience. So a little sharing might be a good place to start. I grew up here in Tipton and moved to Springfield when I started college in 2003. I stayed there to start a job after graduating and Springfield has been my home since. I got married in 2013 to my husband Evan who’s from the area. We started our family fairly quickly and welcomed our first son, Gage, into the world in the summer of 2014 and our youngest, Caleb, a couple years later. I knew becoming a mom would be a life changer, but I could not have imagined how much of an impact it would have on me.

I had an easy, uncomplicated pregnancy with Gage. It wasn’t until after he arrived that we knew anything was wrong.  We had a short stay in the NICU, but came home with our tiny baby boy before confirming a diagnosis of congenital CMV…a common virus that’s not threatening to the general population, but can be devastating for an unborn baby when a pregnant woman gets a primary infection, which is what happened to me. I’d never heard of CMV before Gage’s diagnosis. There’s a huge spectrum of outcomes for children with it. For my son Gage, there were so many unknowns at first, and there still are today. Gage is now 3 and a half years old. He is unable to walk or talk like other kids his age. He does things his own way. He takes steps in a gait trainer. And he speaks volumes with a sweet smile and infectious laugh. What took me a long time to realize is that he will face extra challenges throughout his life. At first, I thought he would overcome everything given enough time. But as more time passed and more milestones were missed it became clear that is not how Gage’s story will unfold.

For me, the first step of sharing our story was getting over my own denial and opening up to other people about my fears and hopes. Luckily I have a wonderful support system that allowed me to do that, but I also became more comfortable sharing by seeing the way others do it and connecting with other special needs parents. Last spring, I began writing more of my thoughts and feelings down. As I wrote, it sometimes felt more like a diary entry than anything else, and at times I thought that was enough. But when I looked back at that last goal written on my list for 2017, I felt that same nudge to share in a bigger way. After plenty of hesitation, I put my words out there for others to see in the form of a blog. The support I’ve received since then has been overwhelming and the ways I’ve personally benefited are huge. That’s why I want to encourage all of you to find a way to share your story.

Several months ago, Gage and I were invited to do a photo shoot and share our story through a platform called 7 Billion Ones. The whole idea behind the movement is that every single person on the earth matters. When I met the photographer, Randy Bacon, he said to me, “everyone has a story to tell and you never know who needs to hear yours.” Those words have really stuck with me. In my experience of telling our story, there are some things I’ve learned that I want to share with all of you today.

Sharing = Support

For me, one of the best things about opening up and being honest is the support generated by it. There are so many instances when people express encouragement or prayers after something I’ve posted. Over and over I’m reminded that we are not meant to get through life alone. Those prayers are truly felt and oftentimes the specific Bible verses or words of encouragement words shared are exactly what I need to hear at that particular time. Whatever your story may be, I hope you don’t feel like you’re alone on your journey and pray that you too can find a solid support system, whatever that may look like for you.

Connect & Find Common Ground

Sharing our story has also led to more connections and more genuine friendships, and in my world, that’s invaluable. That may seem like an odd thing to say since so many of these connections are essentially virtual, but hear me out. I remember the very first time I shared my blog on Facebook, someone commented on my post that her daughter also has CMV. This was the first time I’d ever connected with another parent whose child had the same diagnosis as Gage. Strangely enough, this mom formerly worked with a fellow Tiptonite in another state. So I like to think I have my tiny little hometown to thank for this new connection. We’ve since exchanged numerous emails about our kiddos and she has connected me to even more CMV parents online and other resources. It may seem small, but believe me, the simple fact that someone else even knew what CMV was and could relate to similar struggles was a very big deal. It felt like an affirmation that starting a blog was the right move.

Aside from connecting with people I didn’t know before, I think sharing has brought me closer even to those who know me best. Friends who know all about our story are still able to get a different understanding of it through written words which, in all honesty, sometimes really are like my diary entries. It gives them a chance to know more about the things going on with me or Gage that maybe they wouldn’t have asked about otherwise, or I wouldn’t have voluntarily poured out to them. I’m also pleasantly surprised at the way people can use what we’re going through to relate to something in their own lives that might seem very different. I love the chances to learn more about those situations whenever friends open up and share with me. Living with a child with special needs, sometimes it’s easy to fall into the trap of feeling like we’ve got it harder than everyone else around us. I’m especially grateful for the reminders that we have more in common with other families than things that make us different. Our challenges might be unique, but the chance to share with and relate to others helps me keep my perspective in check.

Healing Power & Better Understanding

More than once now I’ve mentioned that sharing on my blog has at times felt like writing in a diary. I’m half joking, but what’s real is that this opportunity to share has been very therapeutic for me. The outpouring of support I’ve seen is a big part of that, but the other part is that by opening up, I gain a better understanding of myself. Watching my son struggle with the simplest tasks, which come so naturally and easily to most other kids, or being faced with tough choices about his care and treatment, can leave me wrestling with my own emotions. Having an outlet to share my feelings helps me sort through and articulate them. That makes it easier for me to talk about them face-to-face too.

Reflect, Count Your Blessings & Use Your Experience

Finally, sharing my story also comes along with forced reflection. I think that goes hand-in-hand with the cathartic benefits of sharing, but reflecting on my circumstances also forces me to count my blessings. I can look back and see the progress Gage has made as time goes on…he never ceases to amaze me! Regardless of the challenges we face, our lives are undeniably filled with so much joy! I think our family has learned to appreciate and celebrate the small things more than we might have otherwise. I still have so many unanswered questions, and know that on this side of heaven, I always will. But I do believe that because of our struggles, I’m a better version of myself–more compassionate and empathetic. Maybe a little more tired too. But I count my changed perspective as a blessing. I also realize it gives me the opportunity to

share in a way that wasn’t clear to me before.  Although I still feel unqualified and ill-equipped, perhaps I can use whatever platform I may have to bring a message of positivity and hope that’s rooted in God’s promises. As Christians, we’re not promised an easy life, quite the opposite, actually. But we can trust that Christ desires for us to live life more abundantly and that when our help and hope comes from above, we can find a way to experience joy, even in the midst of pain.

I want to leave you today with a reminder of that photographer’s words…”Everyone has a story to tell and you never know who needs to hear yours.” May you each find your own way to share, whatever that looks like for you. It might not be writing a blog or speaking to a group of people. Maybe it’s simply opening up to a close friend. Or maybe it’s crying out to Jesus to let him know you can’t do it alone and need His help. However you share your story, I hope it helps you as much as it has helped me. Thank you for letting me share with you today!

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” – John 16:33

 

 

These words were written a few weeks ago when my feelings were fresh. I waited to share until the good news I learned then was more of a sure thing.

For over 2 years now, we’ve been taking steps to pursue Medicaid coverage for Gage. At first, I didn’t even want to try for it. I think I was still in denial about how complex Gage’s needs would be for his whole life. I also knew we likely wouldn’t qualify for assistance, which proved to be true. Our next move was to pursue a Sarah Lopez waiver, which is designed for children with a disability whose families do not qualify financially. It’s been a frustrating process, and I truly thought the odds were against us. I’ve stayed hopeful that it would work out eventually, but was planning for a very long wait. The process has taught me a lot about grace, patience and gratitude. Even still, diving back in to all the details lately left me feeling stressed and defeated.

This morning, I got a call from our service coordinator letting me know Gage had been chosen to receive the waiver. There are still some hoops to jump through before anything becomes official, so I’m trying not to get my hopes up. But the feelings of happiness I have because of this can’t be contained. I want to celebrate this victory while it still feels like such amazing news. I saw the call coming in at a moment when I couldn’t talk, so I let it go to voicemail. I thought it was strange to be hearing from our service coordinator since we’d just met recently. But I absolutely refused to let my mind wander and speculate on why she might be calling. She left a message that I listened to before calling her back. She said “give me a call. I have some good news for you.” I still refused to let myself hope for the only news I wanted to hear from her. When I did return the call, she told me exactly that and I burst into laughter and tears simultaneously. I told her she made my whole year. I meant it. She explained there was still a process to go through and she’d be in touch with more details. I thanked her profusely. When I hung up the phone, I dropped my face into my hands and sobbed and sobbed. I was sitting in my car in the parking lot at Sam’s. I realized that other shoppers walking by could see me and might be concerned. I didn’t care. I felt so good to cry that hard over something so good. I couldn’t wait to tell Evan. I wanted to do it in person, so hurried straight home. I bust in the door and told him the news. We hugged and celebrated with the boys.

I realize this is not a magical fix to all of our woes. I know there will likely still be frustrations and road blocks as we navigate Gage’s medical care. And I’ve been debating whether or not to even share this news yet, or at all. It feels so personal and I’ve been very hesitant to speak openly about it. But, like I wrote a few weeks ago, I think the good things are worth celebrating, just like happy memories are worth writing down and sticking in a jar.

Regardless of the frustrations we’ve dealt with thus far, or the tough choices we may face down the road, the thing that remains—that is simply undeniable to me—is God’s faithfulness. I feel completely cared for and loved by the way He’s in the midst of the details of our lives.

“The Lord directs the steps of the godly. He delights in every detail of their lives.” Psalm 37:23

When I was pregnant with Gage, Evan came with me to a handful of doctor’s appointments. He was there for the first one, and for our 20 week ultrasound and again for some of the appointments near the end of my pregnancy. At one of those later appointments, my doctor started telling me when I should plan to come to the hospital once labor started. I recall him saying “if you have contractions that are uncomfortable to walk or talk through, that’s a good time to come.”

Evan heard this same advice and interpreted it a little differently than me. The night Gage was born, I had been timing my contractions on and off all day. That evening after dinner, Evan and I took a long walk through our neighborhood and when we got home, my contractions continued getting more intense and closer together. If I questioned whether or not we should go to the hospital, Evan would respond with, “Can you walk? Can you talk?” Since the answer was always yes, he assured me it was not time to go yet.

I love to give Evan a hard time about this. Maybe he was a little extreme with his interpretation of the doctor’s advice, especially considering Gage arrived just a little over 2 hours after I finally insisted we go to the hospital. I’ll tell a completely over exaggerated version of the story, with Evan yelling at me, “Can you walk? Can you talk? Yes?! Then, you’re fine!” and absolutely refusing to give me a ride to the hospital. Truth be told, neither one of us had a clue what to expect or do. Evan would have given me a ride the second I asked, I was just afraid of going to the hospital in the middle of the night for a false alarm. You can read more about Gage’s birth story here.

My over-the-top version of Evan might seem pretty ridiculous, but I’m ashamed to admit, at times, the real version of me is even more ridiculous. In brief moments of self-pity, I’ve compared my situation, my son’s abilities, to others. I know how silly it sounds, to see another child with a disability and my knee jerk reaction is “well at least your kid can…” fill in the blank. It could be any number of things. Like whatever ability I’m choosing to focus on in that instance magically makes that kid’s life easier than Gage’s. “Can he walk? Can she talk? Then they’re fine.” What a foolish sentiment. As if we can rank our struggles. Whether a child has a physical or intellectual disability, or something else or is typically developing, we all have challenges as parents. The problem with trying to figure out who’s got it worse is that nobody wins.

I’ve learned it’s a whole lot more productive to focus on all the reasons our life is good…not just good, but great. Not better than anyone else’s, just great entirely on its own, without comparisons to any standards. I love my kids more than I can put into words, and I’m so proud of them. Not because of what they can do, but because of who they are. The simple fact that I get to have them in my life to love fills me up with so much joy. As we continue on our journey, I hope my immediate response is not to compare our life to others, but to appreciate everyone’s unique situation.

God has given each of you a gift from his great variety of spiritual gifts. Use them well to serve one another. 1 Peter 4:10

With the new year in full swing, we are slowly easing back in to our routines. Gage went back to school on Monday, my work hours have started back up and Evan returns to work for meetings today. As the weeks continue, we’ll have other appointments for Gage added back in to our schedule. Routines can look a little different in a special needs family. Here’s a glimpse at what 2018 holds for us.

Later this month, Gage will return to Missouri State’s Clinic for feeding therapy twice a week. He’s already met and worked with the student who will be helping him this semester, so hopefully we can pick right up where we left off and continue making progress with tolerating different textures and one day drinking from a straw. Those therapy sessions will be longer this semester as we also start exploring different communication devices and working with those. I anticipate it being a long process to find the best fit for Gage, but he’s definitely surprised me before, so we’ll have to wait and see.

For the month of February, Gage will go to intensive occupational therapy 5 days a week for 3 hours a day. We did 3 weeks of intensive PT in the fall and have really seen some wonderful results from it. The biggest thing I’ve noticed is his stability when sitting independently. Now that the OT counterpart is getting started at Mercy, I’m excited to see how it can help Gage. It seems like good timing, as what they work on there might impact how successful he is with a communication device.

In March, we’re so fortunate that Gage and Evan’s spring breaks are the same week! I wish we were planning an escape to a tropical destination where we’d enjoy a week without a worry or care. While I’ll never give up on my favorite hobby of planning fantasy vacations, that’s not looking too promising. Instead, we’ll start the week by travelling to St. Louis Children’s Hospital to consult with a neurosurgeon, Dr. Park, about a procedure called Selective Dorsal Rhizotomy, or SDR, which involves cutting nerve fibers in the spinal cord. It’s used to treat spastic cerebral palsy (stiff, tight muscles) which is Gage’s type of CP. However, I’m not sure if he’ll be a good candidate since he is affected all over and not just in his lower extremities, which from what I’ve read is when it’s most effective.

The more I learn about different treatment options, the more I realize just how many there are! We’re reaching a point where Gage could possibly benefit from pursuing some treatments that when we originally discussed them with his doctors seemed so far down the road we didn’t have to think about them at the time. It was easier to hear that we needed to wait until he was bigger or older to consider it, and keep it in the back of my mind as a way to have hope for the future, but not really focus on the details. Now those details are staring us in the face and it’s scary. I have a confession. There’s a part of me that doesn’t want Gage to be a good candidate for SDR and that way Evan and I aren’t the ones faced with the decision about what to do. The choice is made for us and it’s easier that way. But I also feel like as his parents, we need to do all we can to help Gage have a shot at the best possible outcomes. That may or may not mean pursuing surgical treatment, but at least we should learn as much as possible and make the most informed decisions we can. So we’re in the information gathering stage. I’m really trying to focus on taking it one step at a time and not being overwhelmed by fear.

As we kick off this year and get back to our routines, no matter how out of the ordinary they may be, I’ll choose to anticipate great things to come in 2018. We might even try to squeeze in a short spring break trip after the doctor’s appointment to give us something to be excited about. Instead of dreading the things on our schedule, I want to look forward to the possibilities. God has been ever faithful through our journey and I know He will continue to be. As always, I’m so thankful for the love, prayers and support of our village. Thanks for being there for us in so many ways.

A new year is here and I’m welcoming it with open arms. 2017 was a wonderful year and I look back on so many memories from the past 12 months very fondly. As 2017 kicked off, we started a new tradition in our family – a Joy Jar. I can’t take any credit for the idea. I think I saw it on Pinterest, maybe? But the concept it pretty simple. Each time something joyful happens, you write it down and add it to the jar. At the end of the year, you can read through all those memories and reflect on all the joyful moments from your year.

Yesterday as I sat and read through each memory, with a smile plastered on my face, a few things occurred to me. First of all, nearly all of our joyful moments are thanks to our circle of friends. Almost all of those folded notes mentioned a visit, getaway or get together with friends and family. Secondly, our lives don’t need to be filled with fancy or elaborate things to be full of joy. Many of the noteworthy memories were as simple as a child sleeping through the night in their own bed, pleasant weather, or a thoughtful card that came in the mail. Finally, I noticed that I was much better at adding to the Joy Jar when it was new. I think over half of the notes were dated in January. As the months went on, I got worse and worse about remembering to write things down.

As a new year kicks off, naturally we reflect on the past and start to think ahead about what’s to come. I’ve given some thought to my goals for 2018, but regardless of the specifics, there’s an important lesson to be learned from the Joy Jar. Goals work best if you don’t just focus on them for a short time. Hopefully this year, my enthusiasm won’t fade so quickly.

After reading through my joys I thought to myself, “well that was nice, but maybe one year was enough.” I wasn’t convinced it was a tradition worth continuing. Then, I got some incredible news that changed my mind (more on that to come). I felt so overjoyed, I wanted to document it as a reminder of how happy I felt in that moment. And the year is just getting started! I’m sure there will be plenty of joys to fill up another jar in 2018 and I plan to celebrate those things. Sometimes, feelings of overwhelming sadness don’t always feel like a choice. I can get stuck in a downward spiral of negativity or worry from time to time. So if I have good things to celebrate, and can feel overjoyed by simple things in everyday life, I want to dwell on that instead. May we all have a joy filled New Year! Happy 2018, friends!