Month: February 2019

When I started this blog, I didn’t really know what I was doing. I don’t have experience in web editing and wasn’t sure how to register a domain name or what the heck web hosting was. I would search Pinterest for tips on ‘how to start a blog’ and piece together instructions that seemed to work. To be perfectly honest, so much is still a guessing game and I’m learning as I go. Which seems appropriate given the blog’s title.

While setting it up, I would trouble shoot things to get them to look and work how I wanted. But even taking all that into consideration, one of the hardest parts for me was writing an ‘About Me’ section. Sure, I could tell you all about my awesome husband and my wonderful kids, but I had a very hard time describing what I was, who I am, aside from wife and mother. Months later, I had the same feeling when I was asked to submit a bio to the local newspaper in my hometown before the Tipton Prayer Breakfast. After stating where I went to college and worked, who I was married to and how many kids we had, I felt stuck and asked myself, ‘now what?’

I think there are a few reasons it’s hard to answer the question, ‘who am I?’ Parenting any child requires so much from a person. It’s hard not to lose your identity a bit in caring for a tiny human. Add to that the requirements of special needs parenting—researching diagnoses, accessing therapies, learning how to advocate for your child’s specific needs—and defining yourself by the things you do for you kid becomes even more real. At least it did for me. And I’m willing to bet I’m not alone in that.

I remember the first time Gage did a round of intensive therapy. I was pleased with the format and his outcomes, but my favorite part was the incredible therapists we were introduced to, one who’s a special needs mom herself. One day as we discussed the intensive format, she described how it can be a hard adjustment for parents. It’s easy to get wrapped up in all we do for our kids, which can become such a big part of our identity. The idea of taking extended breaks between therapy sessions rather than ongoing weekly sessions indefinitely, and using that time off to just live and enjoy life can seem like foreign concept. As I listened to her words, I got choked up because they rang so true for me. It was the first time I really recognized just how much I did exactly what she described—defined who I was by what I did.

Another thing that plays into my struggle of figuring out who I am is the amount of change that’s happened in just a few short years. When Evan and I dated and were newlyweds, we were so spontaneous! We would come up with places we wanted to travel to and then just go. We planned our wedding in three weeks, for crying out loud! I loved the freedom to do whatever we wanted all the time. Becoming parents changed our lives in a big way. A big, gigantic, amazing way. But so. much. change! I hope saying that doesn’t give the impression that I long for the days of old or wish things were like they once were. I love, love, love being a mom and feel like a more authentic version of myself than I’ve ever been. But pre-kids, when my life revolved around me, I could easily tell you about my love for travel, plan which concert I’d be going to next, and invite you to happy hour to catch up. When I switched gears to focus on someone else for a change, it became so much harder to define who I was outside of Mom.

Even though I recognize this, I’m not sure where to go from here. I know that it’s a fallacy to define who you are by what you do. I know my worth is more than the roles I play. I also know that I’m still a work in progress. Maybe the things that make it hard for me to say who I am are shaping me into who I’m meant to be.  Maybe someday I’ll have a better grasp on that. Until then, I’ll try to focus on whose I am and delight in the fact that I’m known and loved by my creator.

“For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.”

1 Corinthians 13:12

Monday was a day off for us. Both boys were out of school and Evan was home from work. With my job being remote, I didn’t feel any pressure to check in because all my colleagues were out of the office that day as well. We had no appointments to go to and our time was completely ours. It was wonderful. We stayed in our PJs as long as possible and made puppets out of paper bags. I was able to play, really play, with my kids. I mean sitting on the floor, dragging out every toy they requested, play with them, without a time limit. Of course we slipped in a bit of therapy in the form of practicing choices with Gage’s talker. He told me whether to build the race track longer, or make the cars go, or (his favorite selection) crash them together!

The thing was, we could actually do it. It felt natural and easy to incorporate therapy into playtime because we weren’t rushing out the door to get to the next appointment. Without the pressure to be anywhere, we really enjoyed our time at home. While the boys napped (at the same time, mind you) Evan and I relaxed and watched a movie. It was glorious. Perhaps it felt extra-special because it was a Monday, not part of a typical weekend and not just any weekday, but the first and sometimes toughest one. To top it off, that night Evan grilled a delicious steak dinner for us, which I decided was our belated Valentine’s meal. I honestly don’t remember what we ate on the actual holiday, aside from a giant heart shaped cookie.

That evening, I told Evan it was my favorite kind of day. Though I have to question if days like that would mean so much were they not few and far between. It’s easy to say I’d love for every day to be like that, but if it was, would I appreciate it as much? It was a good reminder to me that I shouldn’t take things for granted, even things that may seem small like a weekday with no work, school, doctor’s appointments, therapy or anything else scheduled. Thinking about it now has me reflecting on things I appreciate in my life, and acknowledging that perhaps I value them more because they are somehow rare or special.

One of these things is simply being a parent. I am over the moon that Gage made me a mom. Having him and Caleb is one of the greatest joys of my life. Sure, there are struggles that come with it, but I truly treasure having them in my life to love, cuddle and be silly with, and to learn and grow from and be challenged by.

Their health and happiness is another huge blessing that I really try not to take for granted. Yes, we’ve had some unsure and scary times dealing with seizures, treatment options, etc, but we’ve also avoided long hospital stays, severe illnesses and major surgeries up to this point. Sadly, that’s not something all special needs parents are able to say. I’m reminded of the battles other sweet kiddos are fighting all the time through their mamas’ social media updates. All too often, it’s more than just battling a cold or flu, or nasty case of pneumonia. There are kids who in many ways are so much like Gage, some with the very same diagnosis, who are literally fighting for their lives. Each time one of those battles is lost, it breaks my heart. I may not know these precious kids or their parents personally, but still feel connected. The time I have with Gage and Caleb as happy, healthy boys is something I never, ever want to take for granted. I’m so grateful to be their mom.

Another thing I’m grateful for is the time I spent as a full time working mom. Going back to work after I had Gage was hard. Much harder than I anticipated. By the grace of God, I worked for understanding and flexible people, and for a period of time we made it work. But that didn’t make it easy. Still, I don’t look back on that time and wish that things were different. If I’d been a stay-at-home mom from day one, I’m not sure I would appreciate just how good I have it now. In the same way, being home can be hard too. If there are times I feel discouraged, I try to remind myself how much I wanted this when I didn’t have it.

Would I love being a stay-at-home mom as much if I didn’t know what it was like to be a working mom? If every day were a day off, could I appreciate it? If it hadn’t taken a mountain of paperwork and long, frustrating wait for Gage to get Medicaid, would I value it as much? I’d like to think the answer to those questions is yes, but who knows? What I do know is that it’s so easy and tempting to take what we have for granted. I know that what I have is so, so good, even if it’s hard sometimes. So, I’ll try my best to always appreciate what I’ve got. But I could definitely go for a few more Mondays off!

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”

James 1:17

Yesterday, Gage had a procedure with his neurologist—Botox injections to loosen up his muscles. It was our first attempt doing it without sedation. I was nervous about it and relied on friends, family and Facebook for prayers. And you all came through in a big way. I know that we were covered in prayer as Gage bravely sat through 14 different pokes! He was so tough, tensed up in my lap and only cried out once, near the end.

To rely on our support system for prayers during things like this is such a comfort to me. I truly feel like it makes a big difference in my own peace of mind. I’ve been thinking a lot lately about the power of prayer and what exactly that means. Are the outcomes of Gage’s procedure any different than they would have been if I hadn’t publicly asked for prayers beforehand? I don’t know. But what I do believe is by sharing our requests, not only am I comforted by an outpouring of support, those praying for us are able to see God’s faithfulness at work.

When I jotted down “power of prayer” as an idea for post, I had recently witnessed two friends receive incredible news on their adoption journeys. One of these friends, just one day prior, had confessed feeling heartbroken in the face of feeling stuck, and pleaded for prayers more than once in a Facebook post. She also acknowledged that God was expanding their peace in the midst of pain. I cried as I read her update, because in her own words, she had no good news to share and my heart ached for her. The very next day, things seemed to be on the fast track of bringing her daughter home, with step after step falling into place. I was overjoyed for their family, and just watching their story unfold the way it did was a wonderful reminder of how powerful prayer can be. But perhaps that power, the real benefit, lies not in altered outcomes, but in reminders and affirmation of God working things together for good.

Of course, there are times when things we pray for don’t turn out the way we hope. And no amount of waiting changes the outcome. While it’s much harder to proclaim how powerful prayer is in those moments, I still believe there is peace to be found, in the midst of pain. And that we can still tap into the power and peace of a God who loves us unconditionally, even when life is hard.  

Although I wanted to share my thoughts on prayer for a few weeks now, what inspired me to go for it are the words of my 11-year-old niece. For a school assignment, she was asked to select a write about her word of the year. She chose “praying.” When I read her resolution paper, I was moved by her words and oh-so-proud. I’m so glad she gave me permission to share her words with you. Those are what I’ll leave you with today.